Olmstead: Reclaiming Institutionalized Lives
Publication date: August 19, 2003
The views contained in this report do not necessarily represent those of the Administration as this and all NCD reports are not subject to the A-19 Executive Branch review process.
An independent federal agency working with the President and Congress to increase the inclusion, independence, and empowerment of all Americans with disabilities.
Letter of Transmittal
September 29, 2003
The White House
Washington, DC 20500
Dear Mr. President:
The National Council on Disability is pleased to submit to you this report titled, Olmstead: Reclaiming Institutionalized Lives. Under its Congressional mandate, the National Council on Disability is charged with the responsibility to gather information on the implementation, effectiveness, and impact of federal laws, policies, programs, and initiatives that affect 54 million Americans with disabilities. This report measures progress to date in the implementation of the landmark U.S. Supreme Court decision in Olmstead v. L.C. and related Federal and State Government initiatives.
In February 2001 you announced the New Freedom Initiative (NFI), a comprehensive plan that represents an important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives, and participate fully in community life. In your NFI, you committed your Administration to pursuing the swift implementation of the Olmstead decision and supporting the most integrated community-based settings for individuals with disabilities.
Overall, varying degrees of progress have occurred in the implementation of the Olmstead decision. However, given the many areas where progress has not yet been achieved and in recognition of the relatively brief time since the decision was rendered and governmental initiatives were undertaken, further efforts clearly are necessary to increase public awareness of Olmstead, provide education and clarification regarding the applications and implications of the decision to relevant entities, and provide resources necessary to both encourage and ensure effective adherence to both the spirit and intent of Olmstead.
In support of the NFI and to progress in the implementation of the Olmstead decision, I pledge our support to your Administration’s commitment to ensuring that equality of opportunity, full participation, independent living, and economic self-sufficiency become realities in the lives of Americans with disabilities. Under your leadership, I remain confident that we can continue to build an America where all citizens live independent lives in the community of their choice.
(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)
National Council on Disability Members and Staff
Lex Frieden, Chairperson
Patricia Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson
Robert R. Davila, Ph.D.
Joel I. Kahn
Young Woo Kang, Ph.D.
Carol Hughes Novak
Anne M. Rader
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Julie Carroll, Attorney Advisor
Joan M. Durocher, Attorney Advisor
Martin Gould, Ed.D., Senior Research Specialist
Geraldine Drake Hawkins, Ph.D., Program Specialist
Pamela O’Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Free our people, free our people
free our people.\
- Supporters of MiCASSA
This report is issued in recognition of the victims of unnecessary institutionalization; our nation must not rest until it has delivered on the promise of freedom for all. The National Council on Disability expresses its appreciation to Judith Gran, Esq., with the Public Interest Law Center of Philadelphia, for drafting this report with the assistance of Max Lapertosa, Esq., and Ruthie Beckwith.
- Barriers to Community Integration in The United States
Delivering on The Promise
The States’ Response
Lessons Learned: Good Practice in Community Services and What Works
CHAPTER I: BARRIERS TO COMMUNITY INTEGRATION IN THE UNITED STATES
- What Is “The Most Integrated Setting”? Views of Persons with Disabilities\
- The Extent of Unnecessary Institutionalization in the United States\
- Barriers to Community Integration\
- Resources and Services Models That Facilitate Community Integration
CHAPTER II: THE OLMSTEAD DECISION
CHAPTER III: CASE LAW APPLYING AND INTERPRETING OLMSTEAD AND OTHER POST-OLMSTEAD CASE LAW CONCERNING RIGHTS TO COMMUNITY SERVICES
- The Meaning of “Meeting the Essential Eligibility Requirements for Community Placement”\
- The Meaning of “Transfer Is Not Opposed by the Affected Individual” 77\
- The Meaning of “The Placement Can Reasonably Be Accommodated”\
- Applying Olmstead to Persons “At Risk” of Institutionalization\
- Pending Cases\
CHAPTER IV: RESPONSES TO OLMSTEAD V. L.C. AT THE FEDERAL LEVEL
- Introduction: the Role of Disability Rights Advocates in Defining the Requirements for Effective OlmsteadImplementation\
- The Federal Response: the HHS Olmstead Policy Letters\
- Other HHS Initiatives\
- The Work Incentives Improvement Act\
- The Executive Order\
- Actions and Proposed Actions by Federal Agencies, as Reported in Delivering on the Promis
CHAPTER V: OVERVIEW: THE STATES’ RESPONSES TO OLMSTEAD V. L.C.
- 1. Alabama
8. District of Columbia
24. New Jersey
25. New Mexico
26. North Carolina
27. North Dakota
32. Rhode Island
33. South Carolina
34. South Dakota
39. West Virginia
CHAPTER VI: IN-DEPTH ANALYSIS OF OLMSTEAD IMPLEMENTATION IN TEN STATES
- 1. Introduction
10. New York
11. New Hampshire
CHAPTER VII: LESSONS LEARNED: GOOD PRACTICE IN COMMUNITY SERVICES AND WHAT WORKS
- Good Practice in Olmstead Planning\
- Overcoming Incentives to Unnecessary Institutionalization\
- Identification and Transition of People with Disabilities from Institutions\
- Use of Trusts and Fine Funds to Finance Transition Costs and Start-up of Community Services\
- Housing Strategies\
- Single-Point-of-Entry Systems\
- Beyond Institutional Closure: Increasing Community Integration\
CHAPTER VIII: CONCLUSIONS AND RECOMMENDATIONS
- Recommendations: How the Federal Government Can Facilitate Implementation of Olmstead V. L.C.
APPENDIX: MISSION OF THE NATIONAL COUNCIL ON DISABILITY
- Overview And Purpose
Consumers Served and Current Activities
The extent of unnecessary institutionalization of people with disabilities in the United States is daunting. Research and experience have shown that the great majority of people who live in large congregate settings could be supported safely and effectively and enjoy a higher quality of life in a typical home in the community. Longitudinal studies of community placement document their more favorable outcomes and furthermore establish that persons with significant disabilities benefit the most from community placement. Similarly, comparing residents of nursing facilities with elders, children with complex health needs, and adults with physical disabilities living at home shows that nursing facility residents are not more severely disabled than those who receive support in their own homes. Yet, 106,000 persons with developmental disabilities lived in public and private institutions and more than 1,300,000 elders and persons with disabilities lived in nursing facilities in the year 2000. In addition, data on the outcomes of consumer-directed mental health services and intensive case management models show that most of the 58,000 persons currently confined in psychiatric institutions could be supported in their own homes in the community. The persons who fill the more than 800,000 licensed board and care beds in the United States could also live in the community.
In this report, the National Council on Disability (NCD) assesses the nation’s response to the United States Supreme Court’s decision in Olmstead v. L.C., 527 U.S. 581 (1999) that the unjustified institutionalization of people with disabilities is a form of discrimination. NCD’s research reports on the extent of unnecessary institutionalization in the United States, the continuing barriers to community placement, and resources and service models that facilitate community integration. NCD examines the Federal Government’s implementation efforts and the strategies states and key stakeholders are using to (1) develop consensus on a coordinated action plan, (2) identify and commit the necessary resources for community-based service options, and (3) sustain collaborative action toward creating real choice for people with disabilities living in institutions.
THE OLMSTEAD DECISION
In 1999, by a clear majority, the United States Supreme Court held in Olmstead v. L.C., 527 U.S. 581, that under the Americans with Disabilities Act (ADA), undue institutionalization qualifies as discrimination by reason of disability and that a person with a mental disability is “qualified” for community living when the state’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
Although the justices agreed that the state is not required to provide immediate relief in the form of community placement where such relief would represent a “fundamental alteration” of the state’s programs, the majority did not agree on what constitutes a “fundamental alteration.” Only four justices agreed on the interpretation of the fundamental alteration defense set forth in Justice Ginsburg’s opinion: that the defense should be construed to “allow the State to show that, in the allocation of available resources, immediate relief for the plaintiffs would be inequitable, given the responsibility the State has undertaken for the care and treatment of a large and diverse population of persons with mental disabilities” (527 U.S. at 604, emphasis added). Justice Ginsburg added that demonstrating that it has “a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings” is one method a state may use to show that it already has reasonably modified its programs and that no further alteration is necessary. This statement became the basis for the Olmstead planning initiatives.
BARRIERS TO COMMUNITY INTEGRATION IN THE UNITED STATES
Representatives of all disability groups agreed that lack of affordable and accessible housing is the single biggest barrier to community integration in the United States. Persons with disabilities whose incomes depend on government benefits need housing subsidies or shared housing to live in the community. Unfortunately, because of systemic barriers, people with disabilities tend not to receive their fair share of the approximately $7 billion in federal housing subsidy programs, and the various Section 8 housing subsidy programs targeted to persons with disabilities are funded at a relatively modest amount ($271 million in 2001) in comparison. An additional barrier is the lack of meaningful collaboration between human services agencies and housing agencies. High unemployment rates for persons with significant disabilities (typically 60 to 90 percent) maintain dependence on public benefits.
Low wages and benefits severely limit the availability of personal assistants and other direct support professionals. In turn, low wages are the result of low reimbursement rates for community services. Lack of quality health care and dependable transportation are also significant barriers.
The institutional bias of the Title XIX (Medicaid) program, in which home- and community-based waiver-funded services and personal care are optional whereas nursing facility services are required and financial eligibility rules for institutional residents are more generous than those for people living in their own homes, greatly compounds the problem. Title XIX waivers have significantly expanded available funding for home- and community-based services but have not leveled the playing field; because state governments do not recognize home- and community-based waiver services as entitlements, waiting lists for waiver services are long in most states. The unavailability of Title XIX reimbursement for services to adults below the age of 65 in Institutions for Mental Diseases (IMDs) poses a significant barrier to the use of home- and community-based waivers to fund community mental health services.
DELIVERING ON THE PROMISE
On June 18, 2001, President George W. Bush, pursuant to his New Freedom Initiative, issued Executive Order No. 13217, committing the Administration to implement the integration mandate of the ADA as interpreted in Olmstead. The Executive Order required federal agencies to promote community living for persons with disabilities by providing coordinated technical assistance to states; identifying specific barriers in federal law, regulation, policy, and practice that impede community participation; and enforcing the rights of persons with disabilities. Pursuant to the Executive Order, federal agencies evaluated their own programs to identify barriers and issued their final reports on March 25, 2002.
Altogether, the reports acknowledged the many barriers to community integration of persons with disabilities, including the institutional bias of the Medicaid program, unaffordable and inaccessible housing, a critical shortage of personal assistance and direct support professionals, and the unavailability of supported employment. However, most of the proposed agency actions consisted of technical assistance, training, research, demonstration, policy review, public awareness campaigns, outreach, enforcement of existing regulations, information dissemination, convening of advisory committees, and interagency coordination and collaboration. Systemic solutions, measurable goals, timelines, deliverables, and outcomes were lacking.
In early 2003, President Bush’s Administration announced a five-year program, the “Money Follows the Individual” Rebalancing Demonstration, to begin in FY 2004 to enable people with disabilities to move from institutions to the community. The program would provide 100 percent federal funding for home- and community-based waiver services for a person leaving an institution for one year, after which the state would agree to continue to provide services for the person at the regular Medicaid matching rate.
THE STATES’ RESPONSE
After Olmstead was decided, the Department of Health and Human Services (HHS) provided guidance to the states concerning the development of “comprehensive, effectively working plans” in increasing community placements. In addition, Olmstead stakeholders concluded that state implementation plans could have value both as an organizing tool for achieving deinstitutionalization and as a method to persuade states to commit to numerical targets, timelines, and allocation of resources. Although the experiences of states and stakeholders in implementing Olmstead varied widely, NCD’s evaluative study documents some key overarching findings:
- Plans do not consistently provide for opportunities for life in the most integrated setting as people with disabilities define “the most integrated setting.”
- The majority of states have not planned to identify or provide community placement to all institutionalized persons who do not oppose community placement.
- Few plans identify systemic barriers to community placement or state action steps to remove them and few plans contain timelines and targets for community placement.
- State budgets often do not reflect Olmstead planning goals.
LESSONS LEARNED: GOOD PRACTICE IN COMMUNITY SERVICES AND WHAT WORKS
The following are some of the many examples suggested by this report of promising practices in the design, delivery, and financing of community services.
- Good practice in Olmstead planning. Indiana’s recent plan assigns each recommendation to one of three categories: (1) those that should be implemented quickly and with little or no fiscal impact or regulatory requirements; (2) those that should be implemented quickly but have a fiscal impact or require regulatory changes; and (3) those that are more complex, costly, or difficult and will require more time to develop and implement. Indiana’s plan should serve as a model for other states. Nevada’s Olmstead plan is commendable for its candid analysis of the state’s compliance with Olmstead.
- Overcoming incentives to unnecessary institutionalization. Methods include Maine’s use of pre-admission screening by an independent agency prior to nursing facility placement, Minnesota’s legislation encouraging nursing facility operators to take beds out of service, and Washington’s system for tracking reduction targets for nursing facility placements.
- Identification and transition of people with disabilities from institutions. Disability rights advocates are doing the work of identifying people in nursing facilities who could move to more integrated settings in Colorado and Kansas.
- Use of trusts and fine funds to finance transition costs and start-up of community services. A creative and underappreciated set of strategies for financing transition costs, providing “bridge funding,” and funding new community services involves the creation of trusts and fine funds dedicated to the needs of people with disabilities. North Carolina, Oregon, and Washington have used the proceeds from the sale of state facilities to establish trusts to generate funds for people with disabilities.
- Housing strategies. Commendably, and in large part because of the influence of the technical assistance provided by HHS’s Office of Civil Rights (OCR), the more recently developed plans tend to reflect the input of housing agencies. Provisions for requiring universal design in new units that state housing agencies fund or finance; ensuring that all existing publicly financed housing has completed Section 504/ADA self-evaluations; conducting utilization reviews to ensure that targeted Section 8 programs are fully used; and including home modifications and home repair in the services provided under home- and community-based waivers and independent living programs are examples of housing-related recommendations in state Olmstead plans.
- Single point of entry systems. Single point of entry structures have the potential to reduce unnecessary institutionalization by providing easier access to a wider array of community services. Single point of entry systems that separate assessment and service brokerage from service provision are also responsive to findings of the Centers for Medicare and Medicaid Services (CMS) in a number of states that Medicaid beneficiaries’ right to choose among qualified providers was violated.
- Beyond institutional closure: Increasing community integration. Developmental disabilities services in Vermont and New Hampshire show that “the most integrated setting” is more than placement in a residence outside an institution; rather, it is a continuous process of increasing community inclusion. These states’ service systems have progressed far beyond institutional closure and are eliminating group homes in favor of living in a companion home or a home of one’s own and working at a real job with support.
- Self-determination. Self-determination and consumer-directed service models have been so broadly tested and practiced that they have emerged as fundamental principles in human services.
Based on its research, NCD recommendations for the Federal Government include the following:
- HHS and CMS should provide more explicit guidance on implementation of Olmstead v. L.C.
- CMS should determine whether the states are adequately identifying residents of Medicaid-funded and -certified facilities that can handle and benefit from community living.
- HHS should refocus its Real Choice Systems Change grant program as a true system-change project by shifting from funding demonstration projects to funding change that affects entire service systems.
- HHS should require the states to identify all institutionalized persons in the state and their need for community services.
- CMS should use its waiver approval authority to require the states to minimize “institutional bias” in the choice between institutional and home- and community-based waiver services.
- HHS should provide federal financial assistance to states to provide small grants to people with disabilities for transition costs from institutions to community.
The Olmstead decision has become a powerful impetus for a national effort to increase community-based alternatives and eliminate unjustified institutional placements. Ultimately, only comprehensive amendments to Title XIX of the Social Security Act (SSA), similar to the amendments proposed in MiCASSA (the Medicaid Community-based Attendant Services and Supports Act), will overcome the institutional bias within the Medicaid program. In the meantime, however, there are many measures short of a thorough revision of Title XIX that federal agencies can and should undertake. We must continue to empower Olmstead stakeholders in their state “systems change activities,” that is, in their efforts to redesign the state service systems to enhance choice, independence, self-determination, and community integration. Our nation will be much more prosperous when it makes real the right of people with disabilities to live in the most integrated setting.
Barriers to Community Integration in the United States
1. WHAT IS “THE MOST INTEGRATED SETTING”? VIEWS OF PERSONS WITH DISABILITIES
People with disabilities have the same rights as other citizens to freedom, equality, equal protection under the law, and control over their own lives. These rights must be honored if people who have disabilities are to be fully included as valued citizens in the relationships and opportunities of community life.1
In our interviews with informants with disabilities and their advocates, we asked what the person considered “the most integrated setting” for persons with disabilities. Almost without exception, the interviewees responded by naming the qualities that make home living meaningful and satisfying to the individual. Only two respondents named a type of program, such as a supported living arrangement or a two-person home. Response patterns were similar across all categories of disability.
The most common response was that the most integrated setting is “a place where the person exercises choice and control,” including choice of service providers: “What people themselves want! … Self-determination is essential. People decide for themselves what they want and need.”2 A variation on this response was, “Whatever the person considers most integrated.” The second most common response was, “A home of one’s own shared with persons whom one has chosen to live with,” or where one lives alone. The third most common response emphasized that home living for persons with disabilities should be like home living for other community members. Integration is “living in the community with everyone else like everyone else.”3 Several respondents defined community integration as the result of participation in community activities or of the assumption by persons with disabilities of leadership roles in the community. And finally, one respondent defined community integration as affording opportunities for privacy, unlike an institution.
Similarly, when interviewees were asked what people with disabilities need to live in the most integrated setting, they responded, almost universally, not by listing formal services but by identifying ordinary human needs. Again, response patterns were similar across all disability groups. The most common response was that support depends on the person, must be defined by and tailored to the individual, and may change over time. The second most common response was that people need friendships, emotional support, and networks of friends, family, and mentors. Education, participation in community activities, and transportation were mentioned by a number of respondents. The only services that were listed were personal assistance, communication (for a person with autism), and case management (by one person); however, this latter response was offset by two respondents who stated emphatically that caseworkers and case managers were not helpful to persons with disabilities.
Every person we interviewed who was affiliated with a disability organization stated that the organization had a position on the right to live in the community. Organizational positions on community living varied little from one disability group to another. Some stated that the right to live in the community is “absolute,” and others that closure of institutions is their organization’s highest priority. The following were other common positions:
- Everyone has the right to live in the community with support.
- People should live independently, not in a nursing home.
- We support the right to choose.
- We support self-determination.
- We support inclusive communities.
2. THE EXTENT OF UNNECESSARY INSTITUTIONALIZATION IN THE UNITED STATES
Measured by our respondents’ views of the most integrated setting, the number of people with disabilities who currently are denied the opportunity to live in the most integrated setting is large indeed. That number includes many people who live in group homes and other small congregate settings as well as those who live in large congregate facilities. However, applying a more modest definition of “the most integrated setting” as a living arrangement other than an institution, the number of unnecessarily institutionalized persons in the United States is daunting.
(a) RESIDENTS OF DEVELOPMENTAL DISABILITIES INSTITUTIONS
In 2000, approximately 106,000 persons lived in state-operated and private Intermediate Care Facilities for persons with Mental Retardation (ICFs/MR) with seven or more beds. In addition, nearly 35,000 people with developmental disabilities lived in nursing facilities.4 For how many of these persons is a large ICF/MR or a nursing facility the most integrated setting? Although formal assessment data are lacking, it is possible to conclude from the studies of other institutional residents who have moved to the community that nearly all could receive the support they need in a small home in the community. During the past 20 years, a large body of research has documented the outcomes for people with developmental disabilities moving from institutions to the community. These studies “strongly suggest that people with all levels of developmental disability would enjoy better lives in community-based settings.”5
The first systematic analysis of the impact of deinstitutionalization, the Pennhurst Longitudinal Study, tracked more than 1,100 persons who moved from Pennhurst Center, a developmental disabilities institution in Pennsylvania, under the court’s orders and consent decree in Halderman v. Pennhurst beginning in 1979. Pennhurst closed in 1987, and virtually every resident moved to the community. Most moved to three-person homes in typical neighborhoods. The study found that as people moved from Pennhurst, they experienced significant gains in skills, personal happiness, family satisfaction, opportunities to participate in community activities, and other indicators of quality of life. In the community, the former Pennhurst residents were “better off in every way that we know how to measure.” Moreover, the gains continued even after people had lived in the community for some time.6
These findings have been replicated in many other states, in cases in which institutional closure occurred under court order and in voluntary deinstitutionalization efforts.7 Further, the studies have shown that institutional residents with the most severe disabilities-those with profound retardation-experience the most dramatic gains in quality of life after they move to the community.8 More recently, studies of former institutional residents who are supported in newer models of services, such as supported living and self-determination, have shown that those persons make even greater gains in skills and experience a dramatically improved quality of life.9
(b) RESIDENTS OF NURSING FACILITIES
Nationwide, 1,302,315 persons lived in nursing facilities in 1999, a slight decrease since 1993, when 1,305,212 persons lived in such facilities.10 Expressed as a percentage of U.S. residents ages 65 and older, this figure is the equivalent of 3.7 percent of the elder population.11 Because occupancy rates in nursing facilities are significantly less than 100 percent (the average occupancy rate was 86 percent in 1997), the number of nursing facility beds is considerably larger than the number of residents. The total number of nursing facility beds in the nation increased from 1.31 million in 1978 to 1.81 million in 1997, and the number of nursing facilities in the nation increased during that period from 14,264 to 17,628.12
The Medical Assistance program supports about 1 million of the 1.3 million nursing facility residents. In 2000, approximately 10.9 percent of those persons were under age 65. The cost of nursing facility services accounted for more than 20 percent of all Medicaid expenditures during most of the 1990s and around 60 percent of all long-term expenditures.13
Nursing facility placement varies significantly from one state to another. For example, in Arizona, the nursing facility population is the equivalent of 1.1 percent of the population age 65 or older, whereas in Mississippi, the comparable percentage is 4.1 percent. In some states, such as Arizona, Maryland, and New Jersey, the nursing facility population has decreased significantly since 1993. In many others, for example, Illinois, Florida, and Indiana, the nursing facility population has increased.
The Nursing Home Reform Act14 requires states to screen persons who are being considered for nursing facility placement to ensure that they need the level of nursing care available in such a facility. The purpose of the Act is to divert persons who do not need nursing home care into community-based services. However, the Act does not prevent unnecessary nursing home placement for persons who do need skilled nursing services but could receive those services in the community if services were available.
The great majority of persons age 65 or older, including those with disabilities, do not live in nursing facilities. In fact, more than 90 percent of disabled older people living in the community get most of their everyday care from family caregivers.15Nevertheless, Medicaid expenditures for elders are highly skewed toward nursing facility services. In 1995, Medicaid expenditures on long-term care for elderly beneficiaries represented 84.1 percent of the total and home care only 10.3 percent.16 Compared with nursing facility residents’ need for community services and the availability of home- and community-based waiver funding for persons with developmental disabilities, the number of elders, adults, and children with physical disabilities and complex health care needs who receive home- and community-based services under the waiver (and who otherwise might have to live in a nursing facility) is relatively modest. According to statistics released by the National Institute on Disability and Rehabilitation Research (NIDRR) in October 2001, 43 home- and community-based waivers for elders with disabilities served a total of 235,215 persons; 27 home- and community-based waivers for persons with physical disabilities served a total of 25,704 persons; 20 home- and community-based waivers for children served a total of 3,072 persons; and 12 home- and community-based waivers for persons with acquired brain injury served a total of 1,373 persons.17
How many nursing facility residents could live in the community if services and support were available? Many elders with disabilities, children with complex health care needs, and adults with physical disabilities who live in their own homes and receive support from personal assistants, family, or friends have disabilities just as severe as those of nursing home residents. Data about the disabilities of more than 200,000 persons served by California’s In-Home Supportive Services (IHSS) program show that the persons who use consumer-directed funds to pay family members or friends to provide personal assistance tend to have significantly more severe disabilities than other persons served by the program.18Community-based models of service for persons with complex health needs, for example, persons with end-stage renal disease, have shown that these persons can receive skilled nursing services in their own homes or in a home-like setting.19
(c) RESIDENTS OF PSYCHIATRIC INSTITUTIONS
The Substance Abuse and Mental Health Services Administration (SAMHSA) of HHS estimates that, in 2001, about 58,000 persons with serious mental illness remained institutionalized in state psychiatric hospitals “in large part” because of “persistent clinical, service system, and financial barriers.”20 Little dispute exists that “[m]any thousands more live in nursing homes and others are inappropriately institutionalized in jails.”21 A 1999 U.S. Department of Justice study reported that 284,000 persons incarcerated in local, state, and federal prisons had a mental illness.22
Downsizing and closure of state mental health institutions accelerated during the 1990s. Although from 1970 to 1990 the total number of state and country psychiatric beds declined by half, only 14 hospitals were closed. During the 1990s, however, 44 state psychiatric hospitals were closed, and three additional closures were planned.23
Data on use of mental health services by race and ethnicity reveal that African-Americans are significantly more likely than whites to be institutionalized in psychiatric hospitals and to be subject to repeat admissions after discharge. At the same time, African-Americans are significantly underrepresented in outpatient treatment programs, and studies show that they are less likely than whites to receive appropriate treatment and newer medications with fewer side effects.24
How many people with psychiatric disabilities are inappropriately institutionalized? Although people with serious mental illnesses may need short-term hospitalization at times, from the experience of state hospital closures25 and the outcomes of consumer-directed services and certain intensive case management models, most people with mental illnesses who might otherwise be confined in state psychiatric hospitals26 clearly can be supported in their own homes in the community.
(d) OTHER INSTITUTIONS, INCLUDING BOARD AND CARE FACILITIES, SHELTER FACILITIES
In 1990, the states reported a total of 514,749 licensed board and care beds serving adults and elders in 35,171 board and care homes. By 1997, these figures had increased to 827,584 beds in 49,913 board and care facilities, but the increase is considered to be due in part to more complete reporting from the states. The average number of board and care beds per facility was 16.6 in 1997.27 Because residents of board and care homes by definition require a lower “level of care” than nursing facility residents (that is, they do not qualify for nursing facility services on the basis of the intensity of services they require), they are by definition less disabled than residents of nursing facilities. If most nursing facility residents could live in their own homes and communities with support, then, a fortiori, most residents of board and care facilities could live in the community.
3. BARRIERS TO COMMUNITY INTEGRATION
Beyond question, the hundreds of thousands of unnecessarily institutionalized persons with disabilities are kept in isolated living situations by systemic barriers that include the very human service systems that are charged with providing appropriate services to persons with disabilities. As the self-advocates who gathered at the 2000 Conference on Self-Determination stated in the declaration that emerged from the conference:
Citizens who have disabilities experience oppression in many aspects of their lives. The causes of oppression include poverty, other people’s attitudes, and the systems of publicly and privately funded support services, comprising -
laws, policies and regulations;
state and private sector funding bodies;
agencies which provide services.
These systems operate in ways that deny control to those they are intended to serve. Without accountability to those who require their assistance, these systems decide how, where and with whom people shall live and spend their days. While this situation persists, people of many nations will not be able to exercise their rights or fully participate in their communities.28
The persons with disabilities whom we interviewed were asked to identify the barriers to community integration for persons with disabilities, weighted by the importance individual respondents gave to the barrier when they listed more than one, and their responses show that lack of affordable and accessible housing was perceived as the biggest barrier. This was so for persons with physical, developmental, and psychiatric disabilities. Respondents identified the following barriers, listed in rank order:
Affordable and accessible housing (38)
Quality support staff (35)
Parent/guardian opposition (30)
Lack of affordable and accessible transportation (28)
Lack of adequate medical or dental care (26)
Neighborhood opposition (23)
Lack of jobs and job training (14)
Lack of residential services (11)
Lack of day services (8)
Other responses included lack of social networks and friends, the need to learn skills, and political issues, such as state employees’ need to keep their jobs and absence of crisis intervention.
No respondent with physical or psychiatric disabilities mentioned lack of day programs as a barrier, and respondents with developmental disabilities ranked it low. Housing, quality (or well-paid) support staff, and lack of access to medical and dental services were ranked high as barriers by persons in all disability groups. Parent/guardian opposition and neighborhood opposition were ranked high by persons with developmental disabilities but not by persons with physical or psychiatric disabilities. Persons with psychiatric disabilities perceived access to medical care as an important barrier.29
The experience reported by the people with disabilities whom we interviewed is amply validated by the literature on obstacles to community integration.
(a) LACK OF AFFORDABLE OR PHYSICALLY ACCESSIBLE HOUSING
It is little wonder that persons with disabilities and disability rights advocates identify lack of affordable or physically accessible housing as the single biggest barrier to community integration. Persons with disabilities are disproportionately poor, especially the persons who are most likely to be affected by the Olmstead decision, who rely on Supplemental Security Income (SSI) and other government benefits.
For low-income people with disabilities, affordable housing means subsidized housing that is either developed or rented through government housing programs. Because most funding for these programs comes directly or indirectly from the U.S. Department of Housing and Urban Development (HUD), there are potentially significant implications for federal housing policies and programs in the Olmstead decision. Thus far, however, the affordable housing issues raised by theOlmstead decision have received scant attention.30
Nationally, SSI benefits are equal to only 18.5 percent of the one-person median household income. The result is no housing market anywhere in the country in which SSI beneficiaries-who numbered more than three and a half million adults with disabilities in 2000-can afford decent housing with their monthly income of about $512 without government subsidies.31 Thus, access by people with disabilities to a fair share of the approximately $7 billion in federal housing subsidy programs is vital to their ability to afford decent and accessible housing in their own communities and neighborhoods.
The unmet housing needs of persons with disabilities, however, cannot be attributed to poverty alone. HUD data show that people with disabilities between the ages of 18 and 62 make up more than 25 percent of the 4.9 million households with the “worst case” housing needs, yet these persons represent only about 13 percent of the households that currently receive federal housing assistance. From 1997 to 1999, the number of households with “worst case” housing needs declined by 8 percent, probably as a result of economic prosperity, and the decline occurred in every group eligible for federal housing assistance except persons with disabilities. Indeed, housing needs among persons with disabilities may have increased during this period.32
A report published by the Technical Assistance Collaborative, Inc., (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force identified the following barriers to expanding housing opportunities for persons with disabilities:
- State and local officials do not give a high priority to the housing needs of persons with disabilities.
- Most Public Housing Authorities (PHAs) do not give a high priority to the housing needs of persons with disabilities.
- Most disability organizations have not established relationships or partnerships with affordable housing providers and funding sources.
- The disability community’s knowledge of the key federal housing programs and policies that can assist persons with disabilities is very limited.
- The disability community has limited knowledge of Fannie Mae housing programs targeted to persons with disabilities.
- Many disability organizations do not understand how participation in HUD’s consolidated plan process can help expand homeownership and rental housing for persons with disabilities.
- Most homeownership coalitions serving persons with disabilities have achieved only modest results, as measured by the number of persons who have become homeowners.
- With more housing knowledge, capacity, and technical assistance, disability organizations can help expand access to affordable housing.33
The effect of these barriers is that people with disabilities are disproportionately cut off from access to the billions of dollars in federal housing assistance for persons with low incomes.
Federal housing assistance is provided in accordance with three housing plans required by HUD that are prepared at the state and local level subject to HUD approval: (1) the Consolidated Plan, or ConPlan; (2) the Public Housing Agency Plan, or PHA plan; and (3) the Continuum of Care Plan for homeless assistance. Although these plans are developed separately, the activities to be funded through the PHA plan and the Continuum of Care Plan must be consistent with the housing needs and strategies identified in the ConPlan.
The ConPlan is a comprehensive, long-range plan for development of affordable housing for low- and moderate-income households in states and local communities that receive funds from HUD. The plan must describe housing needs, market conditions, and housing strategies and set forth an action plan for the use of federal housing funds. It also must specify how the state or locality will spend the money provided through the four principal federal housing subsidy programs: the Community Development Block Grant (CDBG), the Home Investment Partnership Program (HOME), the Emergency Shelter Grant program, and the Housing Opportunities for Persons with AIDS program. The plan must quantify the need for supportive housing for persons with disabilities and other support needs. However, because meaningful participation by the disability community is poor and the disability community is not adequately represented during the development of these plans, people with disabilities are not receiving their “fair share” of the federal housing resources that these plans control. Further, because state and local officials have considerable discretion in developing a ConPlan, HUD will not necessarily reject a plan simply because it does not address the housing needs of people with disabilities.34 And finally, even if the ConPlan accurately identifies local housing needs, including those of persons with disabilities, states are not required actually to spend the money to address those needs. HUD can withhold block grant funds if a ConPlan is not based on a thorough review of local housing needs, but then only to require revision of the plan.35
Advocates report that “most ConPlans do not accurately describe the housing needs of people who may be living in state institutions or facilities or who are at risk of institutionalization,” that “housing strategies adopted in most ConPlans do not typically target federal housing funding to people with disabilities who are waiting to leave institutional settings,” and that little meaningful consultation has occurred between health and human services agencies and housing officials about the housing policy issues raised by Olmstead or the housing resources that could be made available to create more community-based housing for persons who are unnecessarily institutionalized.36
The “meaningless compliance” inherent in the ConPlan process was identified as one of HUD’s management problems in the President’s Management Agenda developed by the Office of Management and the Budget (OMB) for FY 2002. OMB directed HUD to work with local stakeholders to streamline the ConPlan, making it more results-oriented and useful to communities. In 2002, HUD convened a ConPlan Improvement Initiative, a series of work groups with stakeholder representation, including that of people with disabilities, to examine how the ConPlan can better be linked to other federally mandated plans for transportation or human services, how goals should be determined, and how results will be measured.37 As of March 2003, the process is far from complete.
The ADA community-integration mandate-and the extreme poverty of people receiving SSI benefits-should compel government housing officials to target an equitable share of ConPlan funding to people with disabilities.38 This should include a fair share of the funds available through the HOME program, which can be used to fund the acquisition, rehabilitation, or new construction of housing for people with disabilities and could be used to fund two-year rental assistance subsidies for persons leaving institutions. The manner in which HOME funds are used is decided through the ConPlan process.39
The Section 8 program (renamed the Housing Choice Voucher Program in 1998 but still known by its more familiar name) that provides rental vouchers for people with the lowest incomes, including SSI beneficiaries, and currently assists more than 1.4 million households nationwide is controlled by PHAs. These agencies have authority to decide how public housing and Section 8 vouchers should be used in their communities pursuant to a PHA plan that is submitted to HUD for approval.40 Section 8 includes programs targeted to people with disabilities. In addition, people with disabilities are eligible for the general voucher program, known as the “fair share” program. In 2001, Congress appropriated funding for 79,000 new “fair share” vouchers. Beginning in 2000, HUD’s “fair share” application process assigns 15 points to any housing authority (thus giving it an advantage in the competitive application process) that agrees that 15 percent or more of the vouchers requested will be used for people with disabilities. In addition, another 5 points will be assigned if the PHA provides at least 3 percent of the requested Section 8 vouchers to persons who are receiving services under a home- and community-based service waiver.41 According to an analysis by TAC, only 224 of the 499 PHAs that received Section 8 vouchers in 2000 agreed to the set-asides for persons with disabilities; in 2001, the number increased to 422 of 475 PHAs.42 However, the data collected by TAC show that only 171 of the 475 housing authorities set aside 3 percent of their vouchers for home- and community-based waiver beneficiaries.43
On October 12, 2000, HUD issued a final regulation enabling Section 8 vouchers to be used for mortgage payments; however, local PHAs are not required to participate in this program. Further, the PHA can choose to make Section 8 homeownership assistance available to any qualified application or it can limit which families will participate. The inclusion of persons with disabilities in the program will depend significantly on advocacy at the local level.44
The Section 8 program also includes vouchers targeted specifically to people with disabilities. Before 1992, HUD’s Section 202 program required owners of certain HUD-subsidized housing developments to house elderly persons and nonelderly people with disabilities on an equal basis. In 1992, a change in federal law allowed owners to designate these units as “elderly only,” and many did. This significantly restricted access by nonelderly people with disabilities to the housing units. Beginning in 1997, Congress has appropriated funding for Section 8 vouchers designated for persons with disabilities to compensate for the loss of housing in projects now designated “elderly only” projects. These vouchers are available to PHAs that document the loss of housing for people with disabilities in their jurisdictions.45 However, in spite of the fact that the new funding would make up only a fraction of the housing units that have become unavailable to people with disabilities since the “elderly only” provision went into effect, HUD data show that, at most, 10 percent of the PHAs that administer the Section 8 program applied to HUD each year since 1997 to make these vouchers available to people with disabilities. The percentages of PHAs that applied were 9 percent in 1997, 10 percent in 1998, and 8 percent in 1999.46Funding for another 10,000 vouchers has been appropriated since 1997 for the Section 8 Mainstream Program for People with Disabilities.
In 2000, Section 8 programs targeted to people with disabilities provided a total of 8,761 vouchers for people with disabilities (both elderly and nonelderly). Other HUD programs targeted to people with disabilities are the Section 811 Supportive Housing Program, the Section 202 Assisted Living Program (designed to serve frail elderly persons and elderly persons with disabilities), and the Services Coordinators program, which provides funding to owners of private housing developments to hire service coordinators to help persons with disabilities and elders obtain independent living services. Collectively, these programs were funded in 2000 at a total of $271.4 million. In comparison, HUD’s largest affordable housing programs-the CDBG, funded at $4.8 billion in 2000, and HOME, funded at 1.6 billion-are potentially available to persons with disabilities but, as discussed above, are not designed to ensure that people with disabilities will, in fact, obtain a fair share of these benefits.47 A 1999 survey of disability organizations found that very few of these organizations’ constituencies had been able to access “generic” affordable housing programs, such as HOME and the CDBG.48
TAC and the CCD Housing Task Force have concluded that “[t]he stigma experienced by people with disabilities persists in many communities, and makes accessible or developing affordable housing difficult. Often, PHAs, housing developers and city officials would rather avoid serving people with disabilities than face the possible controversy.”49 This conclusion is echoed by a SAMHSA report that “in spite of the passage of the Fair Housing Amendments Act (FHAA) of 1988 [extending protection from discrimination in housing to people with disabilities], discrimination against people with mental illnesses is perhaps most prevalent when it comes to housing.”50 A further barrier to housing for persons with mental health disabilities is the perception that those persons need supervision and ‘round-the-clock support from on-site staff. In fact, “the overwhelming majority of people with mental illnesses can live in their own homes.”51
(b) LACK OF JOBS, JOB TRAINING, AND SUPPORTED EMPLOYMENT
Unemployment rates for persons with significant disabilities are high and have not appreciably diminished since 1990, when the ADA was enacted. The Surgeon General reports that the unemployment rate for persons with significant psychiatric disabilities is around 90 percent.52
Related to the lack of meaningful employment experienced by far too many people with disabilities is the failure of the federal Vocational Rehabilitation (VR) program to adequately serve people with mental disabilities. That program, which provides approximately $2.5 billion to the states annually to provide job training for persons with disabilities who seek to enter or reenter the workforce,53 is ineffective at helping persons who are or have been institutionalized obtain and sustain mainstream employment. Recent studies have documented the dismal record of state VR agencies in achieving meaningful employment outcomes for persons with disabilities.54
Reasons for the ineffectiveness of VR services for people with mental disabilities include the time-limited nature of those services; the use of “weighted closure” systems that reward counselors for closing cases and create disincentives for serving persons with significant disabilities; the emphasis on disability-determination activities over direct service; the lack of specialized expertise in mental disabilities; failure to coordinate with mental health/mental retardation and other disability service programs; and unrealistic funding and durational service limitations that can make it difficult for employment vendors to provide meaningful services to persons with significant disabilities.55 Advocates echo the conclusion of formal studies that federal regulations governing the VR program “do not match with the individualized employment goals of the program.”56 Employment experts have recommended that more of the funds currently spent on VR services be “reprogrammed” and redirected into programs based on models of supported employment, psychosocial rehabilitation, independent living services, and other support services that could enable persons with significant disabilities to succeed in employment.57
(c) DISINCENTIVES TO WORK IN PUBLIC BENEFITS PROGRAMS
Although very many persons with disabilities who receive SSI and Social Security Disability Insurance (SSDI) benefits want to work and would be able to work with appropriate support, relatively few are able to do so because of the disincentives to work created by the eligibility rules for these programs. According to a 1998 study by the General Accounting Office (GAO), only one in 500 SSDI beneficiaries in that year left the rolls by returning to work.58 These data suggest that it is unrealistic to expect significant numbers of people with disabilities to be able to replace public benefits with income from competitive employment and that the great majority of people with disabilities could benefit from income maintenance programs that make it possible to continue to receive public benefits while receiving additional income from employment.
The Social Security Administration reports that the fear of losing health care benefits is the largest barrier preventing people with disabilities from returning to work. Further, the work incentive programs within SSI, SSDI, Medicare, and Medicaid are poorly understood and underused. Increases in income from work may also cause increases in rent under Section 8 housing programs, loss of food stamps, or decreases in public assistance benefits.59
For persons who need personal assistance for work or daily living, the absence of sliding fee scales for personal assistance services is another major disincentive to work because income limits are too low to allow persons with disabilities to be able to pay to replace the services paid for by public benefits. Replacing the current “on/off switch” for eligibility with a sliding fee scale that can accommodate those who can pay privately, those who can pay part of the cost of their services, and those who cannot pay at all is critical.60
(d) SHORTAGE OF PERSONAL CARE ASSISTANCE
Until 1980, primarily registered nurses-employed by visiting nurses’ associations and public health agencies-and family and friends provided support services to people with disabilities in their homes. In the 1980s, changes in Medicare certification and reimbursement policies, the Title XIX home- and community-based waiver amendments of OBRA 1981, and the redefinition of the “homebound” eligibility requirement of Medicare in 1987 led to enormous growth in the number of persons working as personal care assistants.61 Title XIX funds pay for services by home health aides, defined as “services related to a patient’s physical requirements,” similar to the services that would be performed by a nurse’s aide in a hospital or nursing facility.62 Home health aides perform such services as homemaking, bathing, feeding, shopping, and assisting consumers with other activities of daily living.
The availability of personal care assistance is vital to enabling persons with disabilities to avoid institutionalization. Personal care assistants enable people with disabilities to accomplish a wide range of daily living tasks that they would perform themselves if they did not have a disability, including eating, dressing, bathing, grooming, transferring, and health-related tasks, such as medication administration. Personal care assistant jobs are typically entry-level with few benefits and often without reimbursement for travel to clients’ homes, and they pay an hourly wage that is typically about two or three dollars above the minimum wage.63
Because of worker shortages, people with disabilities for whom the state has authorized personal assistance services often do not receive all the hours of service they are entitled to and sometimes fail to receive those services at all. A survey of home care waiver recipients in Minnesota, for example, found that none of the consumers was receiving all the services for which the consumer was authorized.64
(e) LOW WAGES OF SUPPORT STAFF
In 1998, the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry reported that two million health care paraprofessionals worked in the home care sector, of whom 600,000 were earning wages below the poverty line.65 A survey of state legislative priorities by the National Conference of State Legislatures identified workforce issues, including shortages of personnel, as one of the four highest priorities.66
Low wages for direct support staff are the result of low reimbursement rates for personal assistance services by state Medicaid and human services agencies. Low reimbursement rates not only fail to attract adequate numbers of support staff but also affect the competence of the staff who do fill those positions and ensure that those jobs remain entry-level, low-skill, high-turnover jobs.67
Wages and benefits in community services are uncompetitive with jobs requiring comparable education, training, experience, and skill. They are uncompetitive even with jobs requiring significantly lower education, training, experience, and skill, such as fast food jobs. In many states, wages and benefits for direct care and professional staff in community services are radically lower than those in institutions. For example, in California a 1993 study found that the differential in average direct care staff wages and benefits between institutions and community-based services was 124 percent.68 A legislative committee in the same state found that “as a result of low rates, vendors are having extreme difficulty in maintaining existing employees, and in hiring and training new employees.” The subcommittee also found that “staff turnover results in a lower quality of service and can jeopardize the health and safety of the consumers receiving services” because “specialized knowledge about consumers and their needs comes from long-term relationships with direct care staff.” Further, the subcommittee found, “without these services many consumers now living in the community would be forced into more restrictive environments.”69
(f) SERVICE MODELS AND FINANCING SYSTEMS THAT LIMIT SELF-DETERMINATION AND CHOICE
When asked to identify state or federal policies that hinder the ability of persons with disabilities to move into or live in the community, the persons with disabilities whom we interviewed identified the following:
- The institutional bias of Medicaid
- The status of nursing facilities as a required service
- The status of personal care as an optional service
- Funding that encourages congregating people together
- Funding that encourages investment in “bricks and mortar”
- The mind-set that people have to live in a “program”
- The lack of adequate wages for direct service staff
- That waivers have to be renewed, and institutional services don’t
- More dollars going to the institution
- Policies that do not allow paying family members at home, but pay for services in a nursing facility
- Lack of proper use of VR to support persons with severe disabilities.
Many respondents simply identified “funding” as a barrier or cited the imbalance in funding between institutions and community services.
The programmatic and funding obstacles identified by people with disabilities are well supported in the literature. The Medical Assistance program, Title XIX of the Social Security Act,70 is the principal source of funding for long-term care services in the United States. Title XIX is a federal program operated by the states to provide medical and rehabilitation services. In 1998, Title XIX financed about 40 percent of the nation’s total long-term care spending of $150 billion.71
Nursing facility services are a required Title XIX service; all states that accept Medicaid funding are required to provide those services to all eligible persons who request them. Although service in an ICF/MR is an optional state plan service, all the states have elected to provide that service and therefore are obligated to provide it to all eligible persons who request it. Unlike personal care, home health, and home- and community-based waiver services, which the states have great flexibility in designing, the nursing facility and ICF/MR programs require the states to provide 24-hour care according to a detailed set of regulations. Further, the financial eligibility rules for institutional services are far more generous than the requirements for community services-a person can qualify for Medicaid in a nursing home with income up to 300 percent of the federal poverty level. Unless an exception is granted under a waiver, this rule does not apply to people who live in the community. Similarly, spousal deeming of income rules protects the income and assets of the spouse of a nursing facility resident but not the income and assets of the spouse of a person who receives Medicaid services at home. For children placed in institutions, the state may not count the parents’ income in determining the child’s eligibility, but this is not the case for families who care for their children at home.72
In the 35 states that have exercised the option to cover those who are “medically needy,” that is, to allow persons with high medical expenses to “spend down” periodically to financial eligibility levels, the eligibility requirements for community services are in theory not as onerous. In practice, however, the spend-down limits are often so low that people receiving Medicaid services in the community have insufficient income to cover basic living expenses. In 21 states, the medically needy income level is below the level for SSI benefits (currently about $512 a month for an individual), and seven of those states have levels that are less than 50 percent of the SSI rate. A new federal rule promulgated last year gives spend-down states the option to allow individuals to meet the spend-down level while retaining more of their income for basic necessities, but few states have chosen this option.73
As a result of the institutional bias of Title XIX, about three-fourths of Medicaid spending on long-term care is allocated to institutional services. For example, in fiscal year 1998, 58 percent of Medicaid long-term care expenditures were spent on nursing facility services, 17 percent on ICF/MR services, 15 percent on home- and community-based waivers, 6 percent on the personal care option, and 3 percent on home health care. Statistics for 2000 compiled by Americans Disabled for Accessible Public Transit (ADAPT) from data supplied by the MEDSTAT Group, Health Care Finance Administration (HCFA) 64 data, Office of State Agency Financial Management, show only two changes in these percentages in 2000, a decrease from 17 to 15 percent for ICF/MR spending, and an increase from 15 to 18 percent for spending on home- and community-based waivers. Although Title XIX spending on home- and community-based services increased more than spending on institutional services between 1994 and 1999, from about $8 billion to $16 billion, spending on institutional services increased as well, from about $37 billion to about $46 billion. Medicaid spending on nursing facilities increased from $23.2 billion in 1990 to $40.1 billion in 2001. Although the percentage of Medicaid funds spent on institutional services varies from state to state, all states except Oregon spent more on institutional services in 1999 than on home- and community-based services.74
Some advocates indicated that the current delivery system only intensifies unmet needs in the current system-the needs of people with disabilities for long-term care at home and in the community. A representative of the service provider organization American Network of Community Options and Resources (ANCOR) echoed the view that persons with disabilities are dependent on “a 40 year old, outdated, federal long-term support program and financing mechanism, that is … predicated on a … statutory institutional bias, making home and community based services an option.” This results in “inconsistent and disparate community services, not only between states but within the states.”75
Similarly, the National Association of State Mental Health Program Directors stated in a letter to the Secretary of Health and Human Services that “certain federal policies actually obstruct the efforts of states, providers, and consumers to enable individuals with mental illnesses to receive effective treatment and participate fully in community living. People with mental illnesses continue to face discrimination and other barriers in federal programs.”76
(1) Title XIX Waivers and Optional Services: The Personal Care Option, Rehabilitation Option, Targeted Case Management Option, Home- and Community-Based Waivers, and Demonstration Waivers.
These provisions of Title XIX offer states the option to fund home- and community-based services with Medicaid dollars. Especially in the case of the home- and community-based waiver, they afford enough flexibility to fund relatively innovative service models, such as self-determination and consumer-directed personal assistance. However, unlike services in a nursing facility that are required of any state that participates in Title XIX, these services do not have to be provided unless the state elects to do so. Thus, their availability varies from one state to another, and the types of services they are used to fund also varies, sometimes dramatically.
The personal care option can be used to support a person with disabilities in any setting, including the person’s own home. However, because Title XIX dollars cannot be used to pay family members for providing personal care or other services, states must receive a research and demonstration waiver to support programs that allow payments to spouses and family members.77
The rehabilitation option can be used to fund various types of rehabilitative services for people with mental illnesses. According to 1998 data collected by the Bazelon Center for Mental Health Law, all but 10 states had elected to cover psychiatric rehabilitation services under this option. However, states that do provide the rehabilitation option often use a restricted definition of those activities.78
The targeted case management option is one of the most flexible options available under Title XIX. It can be targeted to a specific population, such as persons who are “chronically mentally ill,” and does not have to be offered statewide. However, 24 states do not target intensive case management services to adults with mental illness.79
Although the Title XIX home- and community-based services waiver, created by an amendment to the Social Security Act in 1981,80 allows states great flexibility in supporting people with disabilities in the community, it has not leveled the playing field between institutional and community services, let alone eradicated the institutional bias within Title XIX. Because state governments do not recognize home- and community-based waiver services as an entitlement, unlike nursing facility and ICF/MR services, waiting lists for waiver services are long in many states.81
Further, the waiver is used much more extensively for some groups of people with disabilities than for others. According to statistics released by NIDRR in October 2001, 75 home- and community-based waivers existed for persons with mental retardation or developmental disabilities, serving a total of 216,570 persons in 1997.82 However, only two states had obtained home- and community-based waivers for persons with mental illnesses in 1997, serving a total of 626 persons.83By 2001, only two more mental health waivers had been granted.84 The waiver is little used to provide home- and community-based services to persons with serious mental illness. Only Colorado has a home- and community-based waiver focusing specifically on persons with serious mental illness. Colorado’s mental health waiver serves adults who would otherwise be in a nursing facility, and most are over age 60.85 As of 1999, only three states had obtained home- and community-based waivers for children with mental health needs and two more had applied.86
Under a rule dating from the origins of the Medicaid program, Title XIX reimbursement is not available for services in psychiatric institutions or IMDs for persons between the ages of 22 and 64. The IMD exclusion poses a barrier to the development of community mental health services under home- and community-based services waivers authorized by Section 1915(c) of the Social Security Act, 42 U.S.C. § 1396n(c), because the exclusion effectively bars the granting of waivers to serve persons who, absent the waiver, would require services in an IMD, unless those persons are also eligible for services in a nursing facility. To obtain a 1915(c) waiver, states must demonstrate that the Title XIX expenditures on waiver services will offset the Title XIX dollars that otherwise would be spent on institutional services. Thus, because no Title XIX funds are available for services for adults under 64 in mental hospitals, the option is extremely difficult to use to enable adults with mental illness to move from hospitals or specialized nursing homes that are considered IMDs.87 The statute has also been interpreted to prevent states from using Title XIX expenditures in Residential Treatment Facilities (RTFs) as a cost offset for home- and community-based waivers to serve children in community settings.88 However, because group homes for 16 or fewer persons are not considered IMDs under Title XIX, states may bill Medicaid under 42 U.S.C. § 1396a(i) for group home staff and other mental health services provided to group home residents.89 States may also fund mental health and substance abuse services under the Section 1915(b) waiver, which allows states to waive Medicaid’s freedom of choice provisions and require Medicaid beneficiaries to receive services through a managed care plan. Most states use Section 1915(b) only to fund acute mental health and substance abuse services; a few, such as Colorado, have used it to fund long-term services for persons with significant or persistent mental illness.90
Although the IMD exclusion prevents federal funds from being used for home- and community-based waiver services to adults with mental illnesses, repealing the exclusion would merely create another incentive for institutionalization. Opponents of repealing the exclusion point out that little evidence exists that states would request home- and community-based waivers for IMD residents if the exclusion did not exist. For example, as of 2001, only three states had home- and community-based waivers for children and one had a waiver for adults who would be eligible for funding in an IMD.91
(2) Mental Health Block Grant (MHBG).
MHBG is the principal federal program designed to support community-based public mental health services and reduce reliance on expensive hospitalization. The program is flexible enough to fund a broad range of services, including respite for families and services to children whose parents have psychiatric disabilities. However, the Administration has proposed to fund the MHBG at the same level in FY 2002 as was available in FY 2001.92 This continues a pattern of significant decline in the amount of the block grant in real dollars, from more than $250 million in 1981 to less than $100 million in 1998.93
(3) The Child Health Insurance Program (CHIP).
CHIP, enacted under the Balanced Budget Act of 1997,94 provides insurance coverage for health care, including mental health services, for children in low-income families who were not, at the time of the statute’s enactment, eligible for Medicaid under their state’s eligibility rules. States can include CHIP-eligible children as an eligible group under Medicaid, create a separate health program for them, or both. The first option provides the most complete coverage, but only 23 states have adopted it.95
(4) Barriers within Medicare.
The Medicare program, which provides health care benefits to older adults and persons with disabilities who receive benefits under the SSDI program, requires higher copayments (50 percent as compared with 20 percent) and limitations on reimbursement for mental health services than for other health services, including those who receive disability payments under the SSDI program.96 The absence of prescription drug coverage under Medicare is a serious problem for mental health consumers who require medication as “a first-line defense against disabling symptoms.”97 Medicare provides no coverage for other services that are extremely important to persons with serious mental illness, including case management and psychosocial rehabilitation.
(g) LACK OF AFFORDABLE OR PHYSICALLY ACCESSIBLE TRANSPORTATION
Some advocates consider lack of accessible transportation the single largest barrier to the inclusion of persons with disabilities in society because it prevents them from holding jobs, voting, accessing education or medical care, or participating in ordinary community activities.98
(h) STATE LEGISLATIVE APPROPRIATIONS
State appropriations for mental health services (not including the federal Medicaid match that may be available for some services) have declined by 7 percent since 1990 and are significantly lower today than they were in 1955, when mental health services consisted primarily of custodial care. Spending fell from $16.5 billion to $11.5 billion in 1997 dollars, adjusted for inflation and population.99 State appropriations for mental health services have fallen in relation to total state spending, state spending on health and welfare, and state spending on corrections. From 1990 to 1997, the proportion of all state spending allocated to mental health services fell from 2.12 percent to 1.81 percent, a decline of 13 percent.100
- RESOURCES AND SERVICES MODELS THAT FACILITATE COMMUNITY INTEGRATION
We asked the persons with disabilities whom we interviewed, “What policies could the states enact that would help people who do not need to be institutionalized live in the community?” The responses strongly and consistently favored self-determination and consumer-directed models of service, and they showed an awareness of how federal housing programs need to change to foster community integration, as well as of the obvious changes that need to occur in the Title XIX program. Many people from all disability groups urged the passage of MiCASSA. Our respondents also advocated better information and training for people with disabilities and support and funding for self-advocacy. The responses include the following:
- Fund self-advocacy and add self-advocacy organizations to the “Big 3 [Administration on Developmental Disabilities] programs [the University Affiliated Programs, the Protection and Advocacy systems and the Developmental Disabilities Planning Councils].
- Get rid of red tape; change MA [Medical Assistance] rules and guidelines.
- Pass MiCASSA.
- Make self-determination a federal law.
- Set aside Section 8 vouchers for people who are ready to leave nursing homes.
- Tie rent subsidy program to persons leaving institutions.
- Shift Section 811, which traditionally has been a project-based funding source, to individual vouchers.
- Assist people to live in homes with support staff.
- Stop putting money into institutions and instead put it into housing.
- Provide essential therapies and communication.
- Change professional and bureaucratic attitudes.
- Provide more direct information sessions for people with disabilities to learn their rights.
- Train people in institutions to learn how to live in the community; provide “buddy systems” and more home-based programs.
- Give vouchers for homeownership.
- Offer peer support.
- Provide flexible emergency response systems.
- Offer better salaries for personal assistance providers.
- Eliminate programs’ institutional bias.
- Provide more supported living apartments.
- Offer better pay for front-line staff.
- Require training for staff to overcome the outdated attitude that “I’m here to take care of you.”
- Create more flexibility with waivers.
- Provide equitable support for people with disabilities entering the workforce.
- Allow people to earn higher wages without influencing benefits.
- Give money to people and allow them to use it for support from family and friends, not agencies.
- Educate people that it is OK to be different.
Our respondents’ emphasis on self-determination, choice, and control over how service dollars are spent and on flexible funding is reflected in service models based on self-determination, consumer direction, and direct control of service dollars. These models are not necessarily new-the Centers for Independent Living (CILs) and the mental health consumer/survivors’ self-help movement have been providing consumer-controlled services for the past two decades. Indeed, most of these service models are strongly supported by scientific studies of their outcomes for consumers.
(b) CONSUMER-DIRECTED PERSONAL ASSISTANCE SERVICES
Most personal assistance services provided through publicly funded programs have been provided through private service provider agencies. The “agency model” has the following features: (1) care delivered through a provider agency by caregivers who are supervised by medical professionals; (2) case management to coordinate services; and (3) public regulation of providers to ensure quality. Case managers or other professional staff members of the agency make important service delivery decisions.101 Thus, agency-delivered services tend to diminish, rather than enhance, control by disabled individuals over their lives. Yet, evidence exists that being able to make personal choices regarding one’s own life promotes health, well-being, and personal satisfaction.102 The success of consumer-directed personal assistance services, which place decisions about service delivery squarely in the hands of the consumer, is therefore not surprising.103
Consumer-directed programs permit consumers to have a direct employer-employee relationship with their personal assistants. Health care professionals do not supervise the assistants. The consumer advertises for assistants and interviews, hires, trains, supervises, and, if necessary, fires them.104
Many variations on this concept can be funded under existing Medicaid law and regulations.105 The California IHSS program, which serves more than 200,000 consumers, of whom about half are 65 and older, is the largest and oldest consumer-directed care program in the United States. The program allows payments to a wide range of caregivers, including family and agency-managed caregivers. An evaluation of the IHSS program in the late 1990s showed that the consumers in the program who selected consumer-directed services had significantly greater levels of disability than the consumers who selected provider- or agency-managed services. The consumer-directed model yielded superior results in satisfaction with services, empowerment, and quality of life. Yet the consumer-directed model was significantly more cost-effective than the agency-managed model, costing about 50 percent less for persons with similar disabilities. No evidence was found that consumer-directed services were less safe than agency-managed services. The survey gave no support to the view that consumer-directed services should be limited to those consumers, primarily younger adults, who are considered capable of hiring, firing, and giving direction to their personal assistants.106
Demonstration programs supported by HHS under Section 1115 research and demonstration waivers take the concept further by placing cash to pay for services directly into the hands of consumers. For example, the Cash and Counseling Demonstration, co-sponsored by the Robert Wood Johnson Foundation and HHS, provides consumers with a monthly allowance or budget on the basis of what Medicaid otherwise would have paid to the beneficiary’s regular service providers. Participants in the program develop their own care plans and may spend their allowances as they choose as long as the services they purchase are related to their needs. The “counseling” part of the program provides counselors to explain tax, labor, and other rules and helps consumers with paperwork.107 Each participant in the program receives a cash allowance based on the number of hours of personal assistance services required and the number of hours of services actually delivered. Program participants can hire family, friends, professionals, or neighbors as personal assistants.108
Arkansas is providing cash allowances and counseling to 2,242 persons under a demonstration waiver. People who are eligible for Title XIX personal care services are randomly assigned to a treatment group and a control group. The control group receives personal care through a provider agency. The treatment group receives a monthly cash allowance and services to help them use the allowance. Persons with cognitive impairments are eligible for the program. Early data indicate that treatment group participants have less nursing home use than the control group. At the beginning of the program, the state conducted systematic outreach to eligible persons, including a letter from the governor to all persons receiving personal care.109 Similar programs have been initiated by Florida for 2,847 persons, including 1,000 children,110and New Jersey.111
In a similar program in Oregon, the state agency deposits money electronically in the participant’s bank account every month. The monthly allocation is based on an assessment of the person’s functional status. CILs and Senior Services Centers provide training and technical assistance to participants. To conduct payroll tasks, either the participant or a designated surrogate must pass an exam. If the person or surrogate does not pass the exam, a fiscal intermediary is assigned to conduct payroll functions.112
Initial research on cash and counseling programs demonstrates a high level of satisfaction with these programs. More than 80 percent of the participants in programs that have been evaluated reported that their quality of life had improved, whereas none considered that it had been diminished. Satisfaction with the availability and flexibility of assistance was extremely high (95 percent).113
(c) CENTERS FOR INDEPENDENT LIVING
The CILs, funded under Title VII, Part C, of the Rehabilitation Act of 1973, as amended, have been highly successful in assisting persons with significant physical disabilities to leave nursing facilities and in diverting nursing facility admissions. The National Council on Independent Living (NCIL) claims that in 1999, the most recent year for which figures are available, the CILs assisted 2,300 persons with disabilities to leave nursing facilities and kept almost 15,000 from being forced into nursing facilities, for an average cost of $643 per person in federal dollars. However, funding for the CILs grew by only $10 million in FY 2001.114
(d) CONSUMER-CONTROLLED AGENCY MODELS
Advocates for persons with physical disabilities recognize that a consumer-controlled agency model is an appropriate choice for some consumers who may prefer to work with an agency that handles the administrative work of providing home and community support services. In the consumer-controlled agency model, the consumer would exercise maximum control over selecting, managing, and dismissing attendants, although in most cases the attendants would be employed by the agency and the agency would provide a pool for attendants from whom the consumer could select. The consumer could, if desired, become his or her own fiscal agent. Although the agency might determine the number of hours of service a consumer would receive on the basis of a functional assessment, the consumer would decide when, where, how, and at what times the services would be delivered. Services would include nonmedical support in instrumental activities of daily living. Unlicensed attendants would be allowed to perform health-related tasks through delegation or assignment. Training on attendant management would be available to consumers who desire it. Services would be available to those who can pay privately, those who can pay for some of the costs, and those whose incomes do not allow them to pay the costs at all.115
(e) FAMILY SUPPORT
Family support is a familiar concept from developmental disabilities services, where experience has shown that modest, inexpensive, home-based support services can enable people with significant disabilities to live at home with their families and avoid placement in an institution or group home. Some family support programs, such as Michigan’s, pay a monthly stipend to the family that it can spend as it chooses. These programs have been effective and are highly valued by families. Similarly, modest support services, such as respite care, support groups, training, education, and help in accessing existing community services, can significantly enhance the ability of families to continue to care for elderly relatives at home and lessen the time spent in more expensive residential services, such as nursing facilities.116
(f) CONSUMER-OPERATED PROGRAMS
A list of essential community services for people with mental illnesses developed by the Surgeon General in 1999 includes
- Case management
- Assertive Community Treatment (ACT)
- Psychosocial rehabilitation services
- Community alternatives for crisis care
- Services for co-occurring substance abuse and serious mental illness
- Consumer self-help, consumer-operated programs, consumer advocacy
- Family self-help and advocacy
- Income, education, and employment
- Health care
- Integrated service systems.117
Mental health consumers have emphasized the benefits of consumer-directed initiatives. The National Summit of Mental Health Consumers and Survivors held in Portland, Oregon, in August 1999 identified a number of alternatives to traditional mental health services whose common characteristic is that they are consumer operated and directed and provide peer-to-peer support. Those services include
- Peer counseling
- Employment assistance
- Drop-in centers
- Wilderness camping
- Housing assistance
- Holistic and herbal medicine
The group agreed that the function of these services is “to provide inspiration, hope, and personal experience to peers, provide education and training, and an array of consumer-run services in safe, coercion-free environments, as an integral part of a full system of resources.”118 The group recommended that program, staff certification, and credentialing standards for these programs should be designed by consumers for consumers on the basis of their unique experience, knowledge, and research and integrated into the publicly funded system of services.119 Participants in the summit agreed emphatically that forced treatment, including involuntary outpatient treatment, is ineffective, drives people away from voluntary treatment, and would not be necessary if appropriate community services were available.120
The following principles of service articulated by the National Summit echo the principles outlined in a 1992 report of the Federal Task Force on Homelessness and Severe Mental Illness and are based on research and practice:
- Access, empowerment, and responsibility. Mental health consumers should be empowered to gain access to mainstream resources, and their dignity must be respected.
- Diversity and flexibility. Services should be culturally competent, individualized, and sufficiently flexible to respond to changing needs and preferences.
- Peer, family, and natural supports. Consumers and their allies must engage in planning, delivery, monitoring, and evaluation of services.
- Local, state, and federal participation. Services should be organized locally but coordinated at the state level and supported with leadership and appropriate fiscal incentives at the federal level.121
The effectiveness of consumer-directed initiatives at reducing hospitalization of persons with mental illnesses is strongly supported by a small but growing body of research. For example, a large-scale multimethod study of Consumer/Survivor Development Initiative (CSDI) projects in Canada in 1995 found that average inpatient use declined from 48 days to 4 days. Admissions to hospitals for psychiatric treatment dropped from a mean of 3 admissions to a mean of 0.6 admissions. Another Canadian study published in 1995 found that nearly 60 percent of the participants in a self-help group had not been rehospitalized and that those who had experienced a significant reduction in days spent in the hospital. A much earlier study in New York in 1984 found that persons discharged from psychiatric hospitals who were randomly assigned to participate in a self-help program required half as much re-hospitalization 10 months after discharge as a comparable group who did not participate in the self-help program.122
Drop-in centers are one of the most widespread service models created by the mental health consumer movement. The drop-in center was conceived as a way to meet the need for a safe place for people moving from state mental health institutions to find companionship, feel welcome, and gain acceptance. Staffed entirely by consumers, drop-in centers may provide advocacy training, skills training, and information about housing, benefits, and other issues of interest to consumers, including social programs. Drop-in centers, such as the program operated by AD Lib, Inc., an Independent Living Center in Pittsfield, Massachusetts, have developed into true cross-disability programs whose members include persons with physical disabilities, psychiatric disabilities, retardation, chemical dependency, and learning disabilities.123
Self-determination is a model in which persons with disabilities and a circle of support control the funds that pay for their own services, either directly or through a fiscal intermediary. The use of fiscal intermediaries allows self-determination programs to use Medicaid funding without a research and demonstration waiver. Self-determination originated in the developmental disabilities service system in Monadnock, New Hampshire, in the early 1990s and was an effort to answer the question, “How would a system of supports look if people with disabilities and their circle of friends, or network, were truly in charge of their own services, if they achieved self-determination?”124 The Monadnock model, which has been replicated in many states under the National Self-Determination Initiative supported by the Robert Wood Johnson Foundation, is based on four fundamental principles:
Freedom: The ability for individuals with freely chosen family and/or friends to plan a life with necessary support rather than purchase a program.
Authority: The ability for a person with a disability (with a social support network or circle if needed) to control a certain sum of dollars to purchase these supports.
Support: The arranging of resources and personnel-both formal and informal-that will assist an individual with a disability to live a life in the community rich in community association and contribution.
Responsibility: The acceptance of a valued role in a person’s community through competitive employment, organizational affiliations, spiritual development, and general caring for others in the community, as well as accountability for spending public dollars in a way that is life enhancing for persons with disabilities.125
Evaluations of self-determination programs, including the original Monadnock project, have been highly positive. The persons supported in the program experienced significant gains in self-determination, quality of life, personal satisfaction, improvement in challenging and vocational behavior, and individualized practices in the home.126
(h) SUPPORTED EMPLOYMENT
Successful employment programs combine education, rapid placement in a real job setting (“place, then train”), strong support from a job coach or other employment specialist to adapt to and sustain the job, and support on and off the job from friends, peers, and co-workers.127 Research has shown improved vocational outcomes from supported employment to people with significant disabilities who traditionally have not worked in real jobs.128
Innovative approaches to the employment of persons with mental illnesses include New York’s practice of making available, through a request for proposals (RFP) process, a portion of the savings from discharging persons from psychiatric institutions to the counties. Counties have responded by creating employment programs, including supported employment and clubhouse models. In Florida, a consortium of behavioral health provides job training, placement, and post-employment support with a combination of mental health and labor department funds.129
(i) INTENSIVE CASE MANAGEMENT
Research suggests that intensive case management, including the programs known as Assertive Community Treatment (ACT) and Assertive Case Management (ACM),130 is consistently superior to traditional case management in reducing inpatient stays among persons with serious mental illness.131 Indeed, the evidence of outcomes of traditional case management, in which the case manager assesses needs and deficits and refers the person to services, has been so negative that the model is not recommended as a “best practice.”132 Intensive case management combines high frequency of contact, small caseloads, proactive outreach to consumers, 24-hour availability, and supporting consumers where they live rather than in an office-based practice. ACT, a descendent of the Training in Community Living model developed by Leonard Stein in Madison, Wisconsin, in the 1970s, provides all these features of intensive case management along with a multidisciplinary team approach in which case management is provided by teams of psychiatrists, social workers, nurses, vocational specialists, and other professionals.
Research has shown that intensive case management methods are effective in reducing hospitalization and achieving cost savings, even taking into account the cost of intensive case management and reduced caseloads. For example, a 1993 longitudinal study that tracked people who had been discharged from a state hospital and received ACT using a team approach found a 28 percent decrease in hospital bed days used by the participants by the third year of the study and an “impressive” cost savings for the target area. A 1993 study of the results of an ACT program developed for consumers in a rural community found significant reduction in hospital admissions and length of hospital stay and a 52 percent reduction in the annual cost per person, taking into account the costs of hospitalization, traditional services, and the ACT program. Using a powerful research design, a Canadian study in 1996 found more striking results. In this study, all persons referred to a psychiatric hospital during a 12-month period were randomly assigned to an assertive community rehabilitation program using a team approach modeled on ACT or to a hospital-based case management program. The mean number of hospital days for the experimental group was 39 compared to 256 for the control group. In each month of the study, more and more of the consumers in the experimental group were living in the community, and they scored higher on objective measures of quality of life.133
Mental health consumers advocate strongly that using ACT and Program of Assertive Community Treatment (PACT) services to force consumers into involuntary outpatient treatment should never be done because forced treatment is ineffective, drives people away from voluntary treatment, and would not be necessary if appropriate community services were available.134 Providing the benefits of ACT on a voluntary basis is possible and certainly preferable.
The Medicaid Community-based Attendant Services and Supports Act, introduced but not yet enacted in the last several Congresses and supported overwhelmingly by the disability rights movement, is important to note here because it would end the institutional bias of Title XIX by allowing individuals eligible for nursing facility or ICF/MR services the election to receive community-based attendant services and support. Services covered by MiCASSA would include assistance with activities of daily living, including personal care, household chores, shopping, managing finances, using the telephone, participating in community activities, supervision, and teaching community living skills. MiCASSA would require services that are provided in the most integrated setting appropriate to the needs of the individual;
- based on functional need, rather than diagnosis or age;
- provided in home or community settings, including school, work, recreation, or religious settings;
- selected, managed, and controlled by the consumer of the services;
- supplemented with backup and emergency attendant services;
- furnished according to a service plan agreed to by the consumer; and
- accompanied by voluntary training on selecting, managing, and dismissing attendants.
MiCASSA would allow consumers to choose among various consumer-controlled service delivery models, including vouchers, direct cash payments, fiscal agents, and agency providers.
A person unable to direct his or her own care may be assisted by an authorized representative. The bill would also cover transition costs from a nursing facility or ICF/MR to a home setting-for example, rent and utility deposits, bedding, basic kitchen supplies, and other necessities-and would allow an enhanced federal match of up to 90 percent for persons whose costs exceed 150 percent of average nursing home costs.135 The IMD exclusion would not create a barrier to eligibility for persons with mental illnesses.
The Olmstead Decision
In Olmstead v. L.C.,136 the U.S. Supreme Court, interpreting the Americans with Disabilities Act137 and its implementing regulation 28 C.F.R. § 41.51(d),138 held that “[u]njustified isolation … is properly regarded as discrimination based on disability.”139 The logical consequence, the Court held, is that in appropriate circumstances, “proscription of discrimination may require placement of persons with mental disabilities in community settings rather than institutions.”140 Those circumstances exist, the Court further held, when the institutionalized person is “qualified” to live in a community setting, “with or without reasonable modifications” to the government entity’s “rules, policies, or practices.”141
Olmstead v. L.C. was brought in United States District Court in Georgia on May 11, 1995, by Lois Curtis,142 a woman with disabilities who was institutionalized at Georgia Regional Hospital at Atlanta (GRH-A,) a state mental hospital.143 Ms. Curtis challenged her continued confinement in the institution despite the professional judgment of her psychiatric treatment team that she no longer required inpatient treatment but instead needed community residential and habilitation services.144 Ms. Curtis alleged violations of her rights under the Due Process clause of the Fourteenth Amendment and Title II of the Americans with Disabilities Act.145 She sought declaratory relief and an injunction releasing her from GRH-A and providing her with appropriate treatment by qualified professionals.146 A consent order entered in July 1995 discharged Ms. Curtis to a state institution for persons with retardation, from which she was discharged in February 1996 to a community support program known as “Nyasha Hands.” However, the transfer did not resolve the case because Ms. Curtis contended that she was not receiving appropriate services to support her in the community.147 Meanwhile, Elaine Wilson, who was also confined at GRH-A and whose claims were similar to those raised by Ms. Curtis, was granted leave to intervene in the case.148 Both plaintiffs and defendants filed motions for summary judgment, asking the court to decide the case on the uncontested facts.149
The defendants claimed that Ms. Curtis’ claims were moot because she was already receiving services in a community setting. They argued that they had not violated Ms. Wilson’s rights because she was denied community placement because of inadequate funding, not because of discrimination based on her disability. They further argued that they had not violated Ms. Wilson’s rights under the Due Process clause, because the decision to treat her at GRH-A was based on the exercise of professional judgment.150
The district court held, first, that Ms. Curtis’ claims were not moot, although she was now receiving the services she sought in the community, because her claims were “capable of repetition, yet evading review.”151 The court therefore reached the merits of both plaintiffs’ claims.
Reciting the familiar standard for proving discrimination under the Americans with Disabilities Act, the district court stated that to prove a violation of Title II of the Act, the plaintiffs must show that (1) they are “qualified individual[s] with a disability”; (2) they were excluded from participation in or denied the benefits of a public entity’s services or programs or were otherwise discriminated against; and (3) such discrimination was “by reason of” their disability.152 Applying the standard, the court found that “there is no dispute that plaintiffs are qualified individuals with a disability” and that they could be placed in the community. The defendants disputed whether Ms. Wilson should live in the community, but the court held that “the qualified experts are unanimous” in their opinion that she could.153
The defendants next argued that the two women were denied community services because of inadequate funding and, therefore, that the plaintiffs had failed to prove they had been discriminated against by reason of their disability. The court rejected this contention and held that “under the ADA, unnecessary institutional segregation of the disabled constitutes discrimination per se, which cannot be justified by a lack of funding.”154
The district court based its holding on an analysis of the text of the statute, its legislative history, and the Title II regulation promulgated by the U.S. Attorney General. The court found that the statute made clear, in 42 U.S.C. § 12101(a)(2), (3), and (5), that “segregation” of persons with disabilities is a form of discrimination that Congress intended to eliminate.155 The court also found that the legislative history of the ADA is “replete” with statements reflecting Congress’ intent to prohibit unnecessary segregation.156 Finally, the court held that the Title II regulation stating that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities” “plainly” prohibits discrimination.157 The court also noted that the regulation requires public entities to make reasonable modifications in existing programs to avoid discrimination: “A public entity shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity.”158
Although the defendants claimed that all available funds were being used to provide services to other persons with disabilities, the district court held that the provision would not “fundamentally alter” the defendants’ services. The court based its holding on the following factors: First, the defendants had existing programs that provided services to persons in situations similar to those of the plaintiffs; second, it was undisputed that the defendants could provide services to the plaintiffs at “considerably less cost” than the institution.159 The court granted summary judgment for the plaintiffs, including a declaratory relief, and ordered the defendants to place Elaine Wilson in the community and provide Lois Curtis with “all appropriate services necessary” to maintain her placement in the community.160
On appeal, the Court of Appeals for the Eleventh Circuit affirmed161 the district court’s judgment that the defendants had discriminated against the plaintiffs “by confining them in a segregated institution rather than an integrated community-based program.” However, the court of appeals remanded the case to the district court for further findings concerning the state’s defense that providing community services to the plaintiffs would “fundamentally alter” the nature of the states’ services.162
As it had in the district court, the state contended that the plaintiffs had not been denied community placement because of their disability. The state argued that the ADA requires a comparison of its treatment of persons with disabilities against that of persons without disabilities and that Ms. Curtis and Ms. Wilson had not shown that they had been denied community services that were available to persons without disabilities. In short, the state argued, “Title II of the ADA affords to protection to individuals with disabilities who receive public services designed only for individuals with disabilities.”163
The court rejected this argument summarily. It reasoned, first, that the state had to concede that the plaintiffs were confined at GRH-A because of their disabilities. Second, it reasoned that the state had pointed to no legal authority that supported its reading of Title II; rather, the overwhelming authority in “the plain language of Title II of the ADA, its legislative history, the Attorney General’s Title II regulations, and the Justice Department’s consistent interpretation of those regulations” supported Ms. Curtis’ and Ms. Wilson’s position.164
The court of appeals considered first the proper interpretation of the regulations promulgated by the Attorney General to implement Title II of the ADA and noted that, because Congress entrusted this task to the Attorney General and directed him to define the discrimination prohibited by Title II, the regulations must be “given controlling weight unless they are arbitrary, capricious, or manifestly contrary to the statute.”165 Not only does the regulation require that services be administered in the most integrated setting, but the Attorney General had consistently adopted the interpretation that the most integrated setting was one that “enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible,” both in the appendix to the regulation and in the decision to “participat[e] in this and similar litigation.”166 Thus, the court held, institutional confinement of a person with disabilities who can live in the community violated “the core principle underlying the ADA’s integration mandate” because the opportunity to interact with nondisabled persons is present in only limited circumstances in a state institution, such as GRH-A.
Having found that the district court had properly interpreted the regulation, the court of appeals then considered the validity of the regulation, that is, whether the integration regulation was “manifestly contrary” to the statute. The court found that it was fully consistent with the statute because in enacting the ADA, Congress had directed the Attorney General to promulgate regulations consistent with the coordination regulations promulgated to implement Section 504 of the Rehabilitation Act of 1973,167 which contain an integration mandate essentially identical to the language of 28 C.F.R. § 35.130(d). The 504 regulations require recipients of federal funds to “administer programs and activities in the most integrated setting appropriate to the needs of qualified handicapped persons.”168 In effect, the court of appeals held, Congress “ratified” and voiced its approval of the Section 504 coordination regulations, and this ratification was therefore binding on the court.169
Like the district court, the court of appeals held that the regulation’s consistency with the statute was demonstrated by the plain language of the Congressional findings and by the ADA’s legislative history. Both demonstrate that “Congress ought to eliminate the segregation of individuals with disabilities in passing the ADA.”170
The court rejected the state’s argument that the plaintiffs were not discriminated against “by reason of [their] disability” because they sought services that were not provided to persons without disabilities. “Underlying the ADA’s prohibitions is the notion that individuals with disabilities must be accorded reasonable accommodations not offered to other persons in order to ensure that individuals with disabilities enjoy ‘equality of opportunity, full participation, independent living, and economic self-sufficiency.’“171 Thus, no showing of differential treatment is required.172 Indeed, the court found that the state’s “indifference to [the plaintiffs’] needs-manifested by their refusal to place them in the community while recognizing the propriety of such a placement-is exactly the kind of conduct that the ADA was designed to prevent.” Plainly, the ADA was designed to eliminate discrimination against persons with disabilities that is “the product, not of invidious animus, but rather of thoughtlessness and indifference.”173 Having rejected all the state’s arguments that the plain language of the integration regulation need not be followed, the court of appeals held that “[t]he State’s failure to place L.C. and E.W. in the community thus falls squarely within the ADA’s ban on disability-based discrimination.”174
Next, the court of appeals considered and rejected the state’s argument that lack of funds is a nondiscriminatory reason not to provide services in the most integrated setting. This, the court said, would excuse noncompliance with the assertion that the state lacked the money to comply.175
The court of appeals limited its holding, however, by stating, in dicta, that where the “individual’s treating professionals” did not find that a community-based program was appropriate, “nothing in the ADA requires the deinstitutionalization of the patient.” The court gave no reason why the opinions of the treating professionals, who in the case of a person confined in a state institution would probably be state employees, should be conclusive. Of course, this principle had no application to Lois Curtis or Elaine Wilson, because, as the court of appeals found when it upheld the district court’s grant of summary judgment on this point, all the experts agreed unanimously that they belonged in the community.176
The court of appeals departed from the district court in its holding that although lack of funds is not a nondiscriminatory reason not to provide community services to a qualified person, lack of available funding might nevertheless provide a defense to the plaintiffs’ ADA claims. The court of appeals found that the district court erred in failing to consider whether providing community services to Ms. Curtis and Ms. Wilson would require additional expenditures. The court of appeals held that the important consideration was not whether a community program would be more expensive than an institutional program, but whether the additional expenditures, if any, required to serve the plaintiffs in the community and still pay its fixed overhead costs at the institution would “fundamentally alter the services [the state] provides.”177 Thus, whereas the district court looked only the comparative cost of each individual’s program in the community and the institution, the court of appeals looked at the marginal cost to the state of serving two additional persons in the community. The court of appeals also held that the court should consider the “demands” of the state’s mental health budget and methods available to the state of reducing the burden to the state of the additional marginal cost, such as transferring funds from an institutional budget line to a community budget line. The court of appeals remanded the case to the district court to consider these factors.178
The state petitioned for certiorari, which was granted because of the importance of the issues in the case “to the states and affected individuals.”179 Shortly thereafter, the district court issued a decision concluding that the additional cost to the state of providing community services to the two plaintiffs was not unreasonable in relation to the state’s overall mental health budget. The state also appealed that holding to the court of appeals.180
The Supreme Court affirmed that part of the Eleventh Circuit’s decision, holding that unnecessary segregation is a form of discrimination based on disability that is prohibited by the ADA. However, the Court rejected the court of appeals’ interpretation of the state’s “fundamental alteration” defense to a claim for community placement.
The majority opinion for the Court was delivered by Justice Ginsburg and joined by Justices O’Connor, Souter, and Breyer. Justice Stevens joined Parts I, II, and III-A of Justice Ginsburg’s opinion, but did not join Part III-B, which sets forth the parameters for the fundamental alteration defense. Justice Kennedy concurred only in the judgment and wrote a separate opinion. Justices Thomas wrote a dissenting opinion that Justices Scalia and Rehnquist joined. In a part of her opinion joined by Justices O’Connor, Souter, and Breyer but not by Justice Stevens, Justice Ginsburg wrote that the court must consider not only the marginal cost of serving two additional persons in the community but also “the range of services the state provides others with mental disabilities, and the State’s obligation to mete out those services equitably.”181 Because only four justices signed the part of Justice Ginsburg’s opinion that addresses the fundamental alteration defense, analyzing the three concurring opinions is important to determine what, precisely, the Court held concerning that defense.
Part III-A of the opinion for the Court, joined by five Justices, examined whether “undue institutionalization qualifies as discrimination ‘by reason of disability’” and held that it did. The Court’s analysis is similar to that of the court of appeals. First, the Court recognized that the Department of Justice (DOJ) consistently had advocated, as a litigant and amicus curiae in deinstitutionalization cases, that unnecessary institutionalization is discrimination within the meaning of the ADA and Section 504.182 Although the Court did not find it necessary to accord the views of the DOJ the high degree of deference required by Chevron v. NRDC,183 it found that it was appropriate to look to the views of the DOJ as “guidance.”184
The Court next rejected the contention that “discrimination” requires “uneven treatment of similarly situated individuals,” or that the plaintiffs’ claims should be rejected because they had identified no “comparison class” of persons receiving differential treatment. In an important affirmation of Congress’ intent, the Court stated, “We are satisfied that Congress had a more comprehensive view of the concept of discrimination advanced in the ADA.”185
The Court recognized that the ADA was the culmination of a succession of acts of Congress that were designed “to secure opportunities for people with developmental disabilities to enjoy the benefits of community living.”186 In the Congressional findings that accompanied the ADA, Congress “explicitly identified unjustified ‘segregation’ of persons with disabilities as a ‘form of segregation.’“187
The Court noted that “[r]ecognition that unjustified institutional isolation of persons with disabilities is a form of discrimination reflects two evident judgments.” One is that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” The second is that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”188 In recognizing the congressional judgment that unnecessary segregation is discrimination, the Court acknowledged Congress’ authority to make that judgment, a judgment by which courts must abide, and, at the same time, affirmed its reasonableness and its grounding in everyday experience.
The Court next turned to the question of how individuals who are “qualified” for community living should be identified. The Court held that both state officials and courts “generally” may rely on “the reasonable assessments of its own professionals” when they determine that an individual “meets the essential eligibility requirements for a community program.”189 The Court was careful not to say, as the court of appeals had, that “nothing in the ADA requires” the state to place persons with disabilities in the community in cases in which the state’s own professionals have not recommended community placement.190 The Court plainly left open the possibility that the assessments of the state’s professionals might not be “reasonable,” that they might not make such assessments, and that assessments by state professionals are not the only way for courts to determine whether an institutionalized person can meet the essential eligibility requirements for community services.
The Court was equally careful in framing the issue of opposition to placement in the community. Noting that there is “no federal requirement that community-based treatment be imposed on patients who do not desire it,” the Court held that no genuine dispute existed about Lois Curtis’ and Elaine Wilson’s eligibility for community services because “the state’s own professionals determined that community-based treatment would be appropriate” and “neither woman opposed such treatment.”191 The Court did not place the burden on the plaintiffs to affirmatively request community placement or show that they or an authorized representative, such as a guardian, had consented to it.
Part III-B of Justice Ginsburg’s opinion, joined by four Justices, rejected the court of appeals’ formulation of the fundamental alteration test as the reasonableness of the marginal cost of a handful of additional community placements measured against the state’s entire mental health budget. Obviously, the marginal cost will be such a small fraction that “it is unlikely that a state … could ever prevail” under that test. Justice Ginsburg192 also rejected the cost-comparison test employed by the district court and expressed her concern that this would lead to overall increases in expenses without enabling the state “‘to take advantage of the savings associated with the closure of institutions.’“193 Rather, she stated, “Sensibly construed, the fundamental-alteration defense would allow the State to show that, in the allocation of available resources, immediate relief for the plaintiffs would be inequitable, given the responsibility the State has undertaken for the care and treatment of a large and diverse population of persons with mental disabilities.”194
Justice Ginsburg then invoked the need to provide “a range of facilities,” citing the need to provide a high level of support and supervision for those who need it to avoid improperly “dumping” persons with disabilities in homeless shelters and similar inappropriate settings. Justice Ginsburg suggested that states may need to maintain institutions for some persons. But she drew a remarkable conclusion from these assumptions:
To maintain a range of facilities and to administer services with an even hand, the State must have more leeway than the courts below understood the fundamental-alteration defense to allow. If, for example, the State were to demonstrate that it had a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated, the reasonable-modifications standard would be met.195
This conclusion is remarkable because it seems based on recognition of the relationship between the rights and needs of individuals and the configuration of the state’s service system as a whole. Although Justice Ginsburg characterizes her standard as more generous to the state than the court of appeals’ standard, the opposite is, in fact, probably true under the facts of most deinstitutionalization cases. The “marginal cost” calculation invoked by the court of appeals would tilt in favor of the state when the number of persons with disabilities seeking community placement is large. In contrast, Justice Ginsburg’s standard would not require a “fundamental alteration” when large numbers of persons with disabilities are inappropriately placed in institutions. In a case in which the evidence shows that the entire population of a state institution could be relocated to the community where all institutional residents could receive better services at lower cost, it is difficult to see how the state could prove that community placement for all residents represented a “fundamental alteration.”
Justice Stevens wrote separately to state his opinion that the court of appeals “appropriately remanded” to the district court for consideration of the state’s fundamental alteration defense and that, therefore, the Supreme Court should simply affirm the court of appeals. He noted that the district court, on remand, rejected the state’s fundamental alteration defense and stated that if the district court were wrong in its conclusion that the state had failed to make out such a defense, then that error should be corrected by the court of appeals or the Supreme Court in reviewing that decision.196 Justice Stevens did not squarely address the meaning of “fundamental alteration” or the standard for determining when a change in configuration of the defendants’ service system might constitute a reasonable modification.
Justice Kennedy also wrote separately and did not join any part of the opinion written by Justice Ginsburg. However, he would have remanded the case to the court of appeals or the district court “to determine in the first instance whether a statutory violation is sufficiently alleged and supported in [the] summary judgment materials and, if not, whether they should be given leave dissenters.” Justice Kennedy would have held that discrimination requires “differential treatment vis-a-vis members of a different group on the basis of a statutorily described characteristic,” yet he considered that such discrimination might be proved in this case by evidence showing that “a group of mentally disabled persons” unnecessarily receives “psychiatric or other medical services” in an institutional setting when persons with comparable medical problems receive similar services in an integrated setting. Like the court of appeals, he would have held the “comparative costs of treatment” ought not to be used as the standard for determining “undue burden,” but did not go on to state a standard, other than the view that “[t]he State is entitled to wide discretion in adopting its own systems of cost analysis, and, if it chooses, to allocate health care resources based on fixed and overhead costs for whole institutions and programs.”197
Justices Thomas, Rehnquist, and Scalia dissented on the ground that, in their view, “discrimination” could not encompass “disparate treatment among members of the same protected class.”198
Thus, although a clear majority of the Court held that unnecessary institutionalization of persons with disabilities represents discrimination and unnecessarily institutionalized persons with disabilities have a right to community placement unless the state can show that community placement would represent an undue burden, only four members of the Court could agree on a single definition of “fundamental alteration.” At least five members of the Court agreed, however, that states do not have discretion to keep persons with disabilities unnecessarily institutionalized for unreasonable lengths of time and that the state must at the very least maintain a waiting list that moves at a reasonable pace. The concluding statement of Justice Ginsburg’s opinion seems to be a fair statement of the principles on which at least five Justices agreed:
States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities.199
Case Law Applying and Interpreting Olmstead and Other Post-Olmstead Case Law Concerning Rights to Community Services
The Supreme Court’s decision in Olmstead v. L.C. gave the lower courts an outline for which they have had to fill in some of the details. Since Olmstead was decided, the lower courts have struggled with the meaning of each of the three factors set forth in the plurality opinion to determine whether community placement is required: “the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities”200
1. THE MEANING OF “MEETING THE ESSENTIAL ELIGIBILITY REQUIREMENTS FOR COMMUNITY PLACEMENT”
The Court held in Olmstead that the state “generally may rely on the reasonable assessments of its own professionals in determining whether an individual meets the essential eligibility requirements for habilitation in a community-based program. Absent such qualifications, it would be inappropriate to remove a patient from the more restrictive setting.”201The permissive language of the Court left open the standard by which “reasonable” can be measured. The Court’s brief examination of the first factor raises more questions then it answers. What is a reasonable assessment? How much weight is to be given to the decision of the treating professional? What are the formal requirements, if any? Is “essential eligibility for habilitation in a community-based program” limited by the availability of existing programs?
Most plaintiffs in post-Olmstead cases have been found qualified in some fashion for community placement. The “qualification” issues litigated in the case law to date have concerned the form the assessment or community placement recommendation should take; whether qualification is limited by the services available in existing programs (a related issue because, frequently, institutional professionals may not formally recommend a resident for discharge if they believe that an appropriate program in the community is not available) and whether a formal determination of eligibility for existing community services establishes that the person is qualified to live in a more integrated setting.
Thus, in Frederick L. v. Department of Public Welfare,202 the defendants argued, on a motion to dismiss, that two of the four individual plaintiffs were not qualified for community placement because one had not been recommended for discharge by her treating professionals and the other had been rejected by a community program.203 The district court held that a “formal ‘recommendation’” was not necessary to plead with sufficiency the person’s eligibility for community placement. The plaintiffs had sufficiently alleged that the person was qualified by pleading that a treatment professional had noted that discharge to a small community program would be appropriate. It was immaterial that the professional had not made a formal recommendation for discharge because she believed that an appropriate community placement was not available.
Similarly, it was immaterial that another individual plaintiff had been rejected by a community program after being recommended for community placement. The court found this argument “without merit.”204
Conversely, in Martin v. Taft,205 the district court declined to hold as a matter of law that presence on a waiting list of persons judged by state professionals to need community services was tantamount to a finding that those persons were qualified for the community services they wished to receive: “That an individual may receive some benefit [from community services] does not necessarily ensure that all requirements for qualification have been met.”
Of interest is the district court’s suggestion in Frederick L. that state officials have an affirmative duty to require institutional residents’ treating professionals to recommend community services where the person needed those services: “Olmsteaddoes not allow States to avoid the integration mandate by failing to require professionals to make recommendations regarding the service needs of institutionalized individuals with mental disabilities.”206
In Williams v. Wasserman,207 the district court rejected the defendants’ contention that the individual plaintiffs did not qualify for community-based treatment because “their treatment needs were too specialized to be met in ‘ordinary community placements.’“208 Williams was a class action on behalf of persons with acquired brain injury or developmental disabilities other than retardation who were confined in state institutions, despite long-standing recommendations by their treating professionals that they were ready for discharge to the community. The court declined to adopt the defendants’ definition of eligibility and found that most of the individual plaintiffs met the essential eligibility requirements for community placement on basis of the treating professionals’ recommendations.209 The court held that the inappropriateness of existing community placements for the needs of the plaintiffs who had been recommended for community placement by their treating professionals was relevant to the state’s fundamental alteration defense because appropriate programs required the development and funding of new, individualized programs by providers.210
In Doe v. Sylvester,211 the district court held that a commitment order by a state court did not render unqualified nor ineligible for community services an institutional resident who had been recommended for and was awaiting placement in the community. Doe was brought by a deaf woman whose discharge from a state mental health institution had been delayed because the state defendants had failed to provide the services and modifications she needed to move to the community. While waiting to move to the community program that had been recommended for her, the plaintiff became the subject of a commitment proceeding in state court. She was found to be in need of involuntary treatment at a psychiatric hospital and was committed by the state court to continued involuntary inpatient services “for as long as medically indicated.”212 Denying the defendants’ motion to dismiss, the federal court found that the plaintiff had stated a claim under the integration mandate of the Americans with Disabilities Act and held squarely that the state court commitment order did not affect her right to enforce her right under the integration mandate of Title II. The appropriateness of the community placement she desired and the extent to which the placement could reasonably be accommodated were matters that could be adjudicated by the federal court.213
2. THE MEANING OF “TRANSFER IS NOT OPPOSED BY THE AFFECTED INDIVIDUAL”
The second element of the Olmstead standard requires no opposition from the affected individual.214 The majority of courts have followed the Court’s language in Olmstead and declined to require anything beyond “nonopposition” from the person. That is, the institutionalized individual is not required to express affirmatively a desire to leave the institution. For example, the district court in Frederick L. v. Department of Public Welfare,215 denying a motion to dismiss against the state officials who were responsible for their continued institutionalization in a state psychiatric hospital, held that a plaintiff does not need to plead explicitly that “he or she actually wishes to leave [the institution] and receive services in a community setting.” The plaintiffs’ authorization of the lawsuit was more than sufficient as a statement of “nonopposition.”216
In Roland v. Cellucci,217 the district court approved a settlement agreement in a case brought by nursing facility residents with developmental disabilities who alleged that they were inappropriately institutionalized. The court found that the provisions of the decree affording nursing facility residents an opportunity to express opposition to community placement were consistent with Olmstead. According to those provisions, the defendants were not required to provide community services to a person who “knowingly objects” to receiving those supports. “Knowing objection” would be honored only if the person
(1) has an opportunity to express his or her interests and preferences and any ties he or she might have to a particular community or locale; (2) has been informed of the residential supports in a manner that reflects the person’s ability to understand and communicate information; and (3) is provided the opportunity to visit and observe similar community settings.218
Even if the person expressed opposition, according to these criteria, the defendants must re-offer the choice for a period of three years.219
Although nothing in the courts’ opinions in Olmstead itself suggests that the families of Lois Curtis and Elaine Wilson sought their continued institutionalization,220 in some post-Olmstead cases, families have claimed the right to make decisions about community placement on behalf of the individual. Courts have distinguished the opposition of parents, guardians, and conservators who desire strongly that their family members with disabilities remain institutionalized from the opposition of the person.
In Richard C. v. Houstoun,221 a district court in Pennsylvania held that institutionalized persons with severe disabilities, at least some of whom arguably were not competent, could not be prevented from moving from institutions to community-based settings by family members who opposed the transfer. The family members sought to intervene in a case in which a consent decree had been entered in 1993.222 The would-be intervenors argued that community placement was inappropriate for their relatives,223 that, as a result, the Olmstead test was not satisfied, and that the plaintiffs should be returned to state institutions.224 The district court summarily dismissed the motion for intervention225 and held that “it does not logically follow that institutionalization is required if any one of the three Olmstead criteria is not met.” In light of that conclusion, the court declined to address the families’ additional arguments based on Olmstead.226
In two individual cases concerning an institutional resident whose professional team had recommended her for community placement, however, Pennsylvania state courts ruled in favor of the person’s continued institutionalization. In In re Easly,227 an institutional resident’s professional team concluded that she could function appropriately in a small residence in the community and began planning for her discharge. The resident’s guardian opposed her removal from the institution, in which her family had placed her when she was a child.228 The state Department of Public Welfare sought an order from the trial court formally committing Ms. Easly to the community residence. After a hearing, to which the guardian was a party, the trial court, basing its decision on state law, committed Ms. Easly to the state institution.229
The Secretary of the Department of Public Welfare appealed, arguing that the three conditions set forth in Olmstead for placing Ms. Easly in the community had been met. The Pennsylvania Commonwealth Court found that the first criterion of the Olmstead test had been satisfied and that the third was not an issue, but that the second criterion, the nonopposition of the affected party, had not been satisfied because Ms. Easly was “totally incapacitated and ha[d] no ability to communicate a conscious, informed and intelligent decision as to her preference.”230 Although the court stopped short of holding that the guardian has a legal right to veto community placement, it did hold that the trial court did not err in determining that a guardian “must be at least a participant in the decision concerning matters affecting the care and treatment of the incapacitated person” and upheld the trial court’s decision that “moving Ms. Easly from Polk Center to [the community] over the rational, well-founded objections of her legal guardian was tantamount to moving Ms. Easly to [the community] over her objection.”231 The precise holding of Easly is not, therefore, that a guardian is entitled to oppose community placement on behalf of the affected individual, but that a trial court may properly find, based on the evidence in an individual matter, that the guardian has effectively expressed the “opposition” of the individual.
In a similar commitment case, In re Bear,232 a Pennsylvania state court interpreted Olmstead to “recognize . . . an element of choice” between continued institutional placement and a proposed community placement and, relying not simply onOlmstead but on a regulation promulgated under Title XIX of the Social Security Act allowing ICF/MR-eligible beneficiaries to choose between ICF/MR and waiver services,233 found that “the choice in that situation belongs not only to the mentally retarded individual but also to his or her legal representative.”234 However, as an interpretation of Olmstead, these statements are dicta because the court based its holding (that the institutional resident was more appropriately served in the state institution) on state law rather than on the Americans with Disabilities Act.
In any case, the court’s interpretation of the federal regulation, 42 C.F.R. § 441.302(d), on which it relied as providing a “right to refuse transfer from a state institution to a proposed community placement,” was incorrect. The regulation requires each state participating in the home- and community-based waiver program to provide
assurance that when a recipient is determined to be likely to require the level of care provided in a hospital, NF [nursing facility], or ICF/MR, the recipient or his or her legal representative will be
(1) Informed of any feasible alternatives available under the waiver; and
(2) Given the choice of either institutional or home and community-based services.
The regulation requires participating states to offer each ICF/MR-eligible Medicaid beneficiary a choice of services in the home- and community-based waiver or services in an institution, which, as Title XIX defines the term, means “an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.”235 The regulation does not confer a right to remain in a particular institution, but only, for persons eligible for services in an ICF/MR, the right to elect services in a facility certified as an ICF/MR. Such a facility could be as small as four persons. The right to remain in a particular facility operated by the state could be created, if at all, under the “choice of provider” provision of Title XIX, which provides that
any individual eligible for medical assistance … may obtain such assistance from any institution, agency, community pharmacy, or person qualified to perform the service or services required … who undertakes to provide him such services.236
The regulation promulgated under this statutory section makes clear that this language means that the provider must be
(i) Qualified to furnish the services; and
(ii) Willing to furnish them to that particular recipient.237
Because an individual Medicaid beneficiary’s right to choose a qualified Medicaid provider is subject to the provider’s willingness to provide the service to that individual, the right to remain in a state institution simply does not exist in a situation where, as in Easly, the state sought the person’s placement in the community and, because she did not need institutionalization, no longer was willing to furnish her with institutional services.238
It is important to emphasize that In re Easly and In re Bear were commitment cases, in which state courts were asked to rule on petitions for the placement of a person with disabilities pursuant to a state commitment statute. Once presented with such a petition, the court applied state law to determine, based on the evidence before it, which placement served the interest of the person. In neither case did the person herself squarely raise the issue of her own nonopposition to community placement: In Easly, the person’s claims under Title II were actually raised by the state petitioners; in Bear, they were raised by the state Protection and Advocacy agency as an amicus curiae.239
Some post-Olmstead cases, especially those brought by guardians and conservators of persons with disabilities, address the claim that Title II confers a right to remain in the institution if that is the most integrated setting. This interpretation ofOlmstead relies on the dicta in Olmstead, “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings.”240
The brother and conservator of a former resident of Camarillo State Hospital, a psychiatric hospital in California, advanced such an interpretation of Olmstead in Black v. Department of Mental Health.241 Black was a wrongful death action against California state officials based on the theory that the former Camarillo resident’s death was the result of an inappropriate discharge to a private facility.242 On appeal from a lower court’s decision granting the state defendants’ motion to dismiss, the conservator argued that the defendants had violated the integration mandate of the Americans with Disabilities Act because the transfer was inconsistent with his brother’s treatment needs and based not on those needs but on the need to find an alternative location for him because of the state legislature’s decision to close Camarillo. Thus, as the court construed the conservator’s ADA claim, it was based on the contention that “the decedent should have been transferred from one state mental hospital to another, not to a private community care facility that was inadequate to handle decedent’s treatment needs.”243 The court of appeals found that even if the conservator’s assertions were true, he had not stated a cause of action under the Act:
Nothing in the ADA, its regulations, or the decisions applying the integration mandate appears aimed at the core allegations of appellant’s ADA-based cause of action - where the institutionalized decedent was not suited for community care and the State transferred him to such a setting simply because there were no other placement alternatives available.244
Thus, the conservator had misread Olmstead. The Supreme Court’s dicta that the ADA does not “condone” community placement of persons who cannot handle or benefit from it was neither a holding nor even a signal that “a medically inappropriate transfer from institutionalization to community placement is, by itself, a violation of the integration mandate.” Rather, the Court was “merely identifying the outer limits of a state’s duties under the integration mandate, not establishing new ones.”245 The fact that the state may not, in a particular case, have a duty to transfer an institutional resident to the community does not translate into an affirmative duty to keep him or her in an institution.
In Richard S. v. Department of Developmental Services,246 a case brought in federal court on behalf of residents of a state developmental disabilities institution by a physician who sought to stop their placement in the community, the court held that even if a state’s decision to discharge the plaintiffs to the community might be unwise or premature, it is not discriminatory within the meaning of the Americans with Disabilities Act. In Richard S., Protection and Advocacy, Inc. (PAI; California’s P&A), successfully intervened in the case and moved for summary judgment. The court held that the ADA’s integration mandate is not violated by premature discharge into the community. The court also granted summary judgment on PAI’s claim against the Department of Developmental Services (DDS) challenging DDS’s policy of giving conservators and family members “veto power” over individual program planning team recommendations for community placement. The court found that the policy improperly allowed conservators and family members to waive the institutional residents’ rights under federal law. The court permanently enjoined DDS from using any policy, practice, or procedure allowing family members, conservators, or legal representatives of “veto” community placement.247
3. THE MEANING OF “THE PLACEMENT CAN REASONABLY BE ACCOMMODATED”
The “fundamental alteration” defense as articulated in Justice Ginsburg’s plurality opinion has been the most challenging component of Olmstead for the courts to interpret. In the cases interpreting the defense, the courts have struggled to decide how quickly a placement decision must be implemented given existing resources and the state’s duty to modify existing services, including its Medicaid program.
In Kathleen S. v. Department of Public Welfare,248 a post-Olmstead decision approving a settlement in a case on behalf of persons with mental illness institutionalized in a state psychiatric facility, the district court reasoned that its earlier decision249 was consistent with the standards announced by the Supreme Court in Olmstead. The defendants, Pennsylvania state officials, had argued at trial that placing all members of the plaintiff class into the community would force it to fundamentally alter the extent and complexity of the community services it provided. Nevertheless, the district court found that the defendants had failed to show that the Commonwealth’s providing community services to members of the plaintiff class would result in a fundamental alteration of its service system.250 The court also held that three years was an unreasonably long time for the court to require institutional residents to wait for community services.251
However, in Williams v. Wasserman,252 in which the plaintiffs sought community placement for institutional residents with acquired brain injury, the district court found that although it was undisputed that community placement was on the average less expensive than institutional placement, the costs associated with downsizing over a period of “three to five” years would require “double-funding” of institutional and community-based services and that the more rapid pace desired by the plaintiffs would result in a fundamental alteration of the state’s program.253 The court also relied on evidence showing that the state would need to maintain 1,100 to 1,200 institutional beds for acute and long-term care for persons with acquired brain injury in its holding that the state had met its burden to show that it had a comprehensive, effectively working plan.254
The district court in Williams did not absolve the state of the duty to continue to place persons with brain injury in the most integrated setting. Rather, it held only that the state was making acceptable progress in transferring qualified persons with disabilities to the most integrated setting, “[m]easured against the three to five year time frame, and considering the need to maintain a minimum number of hospital beds and also to fund placements for other persons in need of community treatment.”255
Other courts have refused to excuse the state from the duty to serve persons with disabilities in the most integrated setting merely because the state contends that institutional services are more cost-effective. In Sanon v. Wing,256 several individual Medicaid beneficiaries challenged the termination of home health services by city and state officials. The state had determined that their home health services were no longer cost-effective because they exceeded 90 percent of the average cost of a nursing facility and referred them for nursing facility placement. The defendants alleged that continuing to provide home health care to persons whose costs exceeded the limit would constitute a fundamental alteration because the state would be required to pay for 24-hour personal care services whenever the Medicaid recipient “prefers” home care. The state acknowledged that it had not considered whether home care was the most integrated setting appropriate for the plaintiffs.
The court held that unless the state could demonstrate that continuing to provide the plaintiffs with home-based services would result in a fundamental alteration in the Medicaid program, the state had to provide services in the most integrated setting appropriate to their needs. The state failed to show that continuing to provide the home health services the plaintiffs sought would alter its program, taking into account the “competing demands of others requiring services,” so the court enjoined the state from terminating the services.
The court of appeals’ decision in Rodriguez v. City of New York,257 holding that New York state officials did not have a duty to provide a new personal assistance service, safety monitoring, as a Medicaid provision along with the other personal assistance services they already provided pursuant to Title XIX of the Social Security Act, is sometimes cited as an interpretation of the “fundamental alteration” defense. However, although the court of appeals did state that New York “had legitimate fiscal reasons not to provide safety monitoring” because “the cost of personal care services would be significantly greater if safety monitoring were provided,” this statement is dicta and unnecessary to the court’s holding under either the Americans with Disabilities Act or the Social Security Act, which were based on the absence of impermissible discrimination or of violation of the Social Security Act’s “comparability” requirement.258 The court held that the failure to provide safety monitoring did not impermissibly discriminate among person with different disabilities. The plaintiffs in Rodriguez were persons with Alzheimer’s disease and other cognitive disabilities that caused them to require assistance with personal care. Although they received the personal care services the state did provide, they alleged that they needed safety monitoring, that is, the presence of a caregiver in the person’s home, to ensure that the person did not harm himself. Without this service, they asserted that they would not be able to remain in their own homes.
The court of appeals, reversing the district court, held that plaintiffs had not been discriminated against because of their disabilities because New York provided “identical services to mentally and physically disabled Medicaid recipients.” The denial of safety monitoring was not discriminatory because safety monitoring was not provided to any group of persons with disabilities.259 The court’s decision is consistent with the wide discretion that Title XIX gives states to design certain Medicaid services, especially the optional service of personal care.260
In Martin v. Taft,261 ruling on a motion to dismiss in a case filed in 1989 on behalf of Ohio citizens with developmental disabilities who were not receiving services in the most integrated setting, the district court refused to dismiss the plaintiffs’ complaints on “fundamental alteration” grounds. The court distinguished the case from Rodriguez because the home- and community-based services the plaintiffs sought were not new services but an existing program in which the plaintiffs sought to be included.
Similarly, in Makin v. Hawaii,262 a case brought by people with developmental disabilities on waiting lists for home- and community-based waiver services, the availability of a Medicaid service rather than the design of the service was at issue. The district court held that the state had not shown that expanding the state’s home- and community-based waiver to include more beneficiaries would constitute a fundamental alternation of its program. The defendants had argued that disregarding state funding limits placed on the home- and community-based waiver program would fundamentally alter the program. They also argued that they could not be obligated to provide waiver services to more beneficiaries than the state had received approval from the federal government to serve.263
The court rejected both arguments and held that the state had not shown how expanding the waiver would fundamentally alter the state’s program; rather, the defendants had “merely argue[d] that the State would potentially have a problem funding [the requested accommodation].” The court noted that in analyzing whether increasing the number of waiver slots was a fundamental alteration, it would not assume that the state would have to provide 100 percent of the funds beyond the “population limit” of the waiver, but would analyze whether the state could amend the population limits approved by the federal government to provide services for the number of persons who needed services and whether that would be a reasonable modification.264 The court also noted the defendants had produced no evidence that they had a “comprehensive plan” to keep the waiting list moving at a reasonable pace. The only evidence they produced of compliance with the ADA was an increase in the number of waiver “slots.” This alone did not prove their compliance with the integration mandate.265
Makin is significant because it held that although Title XIX’s home- and community-based waiver program grants states the discretion to limit the number of persons or “slots” that the waiver will support and even to lower that number once the waiver is approved,266 Title II of the ADA may require the state to serve additional persons even after the “slots” are filled. However, in Arc of Washington State v. Quasim,267 filed in November 1999 on behalf of people with developmental disabilities waiting for community services, the district court held that the ADA cannot require a state to increase its limit on the number of persons who receive home- and community-based waiver services because this would represent a fundamental alteration in the state’s services. The court granted the defendants’ motion for summary judgment on the plaintiffs’ ADA claims.268
The courts’ holdings in Makin and Arc of Washington State are not inconsistent. As the Department of Health and Human Services made clear to state Medicaid directors in its Olmstead Update No. 4,269 the state’s authority to limit the number of home- and community-based services recipients under Title XIX of the Social Security Act does not, and cannot, limit its obligation under the Americans with Disabilities Act to serve people with disabilities in the community. Although it is true that “[t]he State does not have an obligation under Medicaid law to serve more people in the HCBS [home- and community-based services] waiver than the number requested by the State and approved by the Secretary” (emphasis in original), nevertheless, “[i]f other laws (e.g., ADA) require the State to serve more people, the State may do so by using non-Medicaid funds or may request an increase in the number of people permitted under an HCBS waiver.” Whereas states have discretion to avail themselves of possible federal funding, “[f]ailure to seek or secure Federal Medicaid funding does not generally relieve the State of an obligation that might be derived from other legislative sources (beyond Medicaid), such as the ADA.” In other words, the state’s self-imposed limit on the number of persons it will serve in its home- and community-based waiver is not a safe harbor.
In a case brought under the ADA’s integration mandate, whether the relief requested by the plaintiffs would require a fundamental alteration of the state’s services is a highly factual inquiry. Thus, the district court in Martin v. Taft held that it is generally inappropriate to decide whether the provision of community services would represent a fundamental alteration on a motion to dismiss.270 The court further held that the plaintiffs bear the initial burden of demonstrating that reasonable modification is available.271 Plaintiffs may meet their initial burden by “asserting that it costs the State less to offer community-based services than it does to provide the same services in institutions, and by alleging the availability of additional Medicaid waivers from the Federal Government.”272 Once the plaintiffs have demonstrated the availability of reasonable modification, the burden of proving that the requested modification is not reasonable passes to the defendants.273 The district court emphasized that proving the existence of a comprehensive, effectively working plan is not the only method by which the defendants can demonstrate compliance with the ADA’s integration mandate. The existence of such a plan is only an example of the ways state officials can meet their burden: “The presence or absence of an existing state plan and a waiting list that moves at a reasonable pace does nothing whatsoever to answer whether, in the first instance, a reasonable modification is available.”274
Just as the absence of a plan does not necessarily mean that the defendants have failed to accommodate the plaintiffs’ right to participate in community-integrated services, so the principle enunciated by the Martin court would suggest, by the same token, that the presence of a plan may not be sufficient to meet the defendants’ burden to show that they have, indeed, reasonably accommodated the plaintiffs’ desire to live in the most integrated setting.
In Pennsylvania Protection & Advocacy, Inc. v. Department of Public Welfare,275 a case brought to assert the rights of residents of the South Mountain Restoration Center, a specialized nursing facility for elders, the district court, ruling on cross-motions for summary judgment, held that the defendants had shown that the development of community services for South Mountain residents would constitute a “fundamental alteration” of the state’s program. The court reached this conclusion based on a detailed cost analysis submitted by both parties comparing the cost of community placement with the cost of keeping residents at the facility. The court interpreted Olmstead’s admonition to compare the cost of community placement with “the resources available to the state” to mean that the point of comparison should be the state’s “mental health” budget, not its overall budget,276 and held that community placement of all South Mountain residents who could be placed would represent a “fundamental alteration.”277
Although it may be inappropriate for a court to order the defendants to pursue a specific source of federal funds, for example, to request additional slots for the state’s home- and community-based waiver, the availability of additional federal reimbursement plainly is a factor that the court should consider when determining whether the state’s waiting lists move at a reasonable pace. If the evidence shows that the defendants have unreasonably declined to avail themselves of readily available federal funding for home- and community-based services, the court may properly reject their claims that the relief requested would represent a “fundamental alteration.”278
In considering whether the relief requested by the plaintiffs would constitute a fundamental alteration, the court should also consider whether the community services the plaintiffs request could be provided through the Medicaid ICF/MR program. If the state has elected to provide ICF/MR services, an optional service under Medicaid, then the state is obligated to provide those services with reasonable promptness to all Medicaid beneficiaries who are eligible for them.279
4. APPLYING OLMSTEAD TO PERSONS “AT RISK” OF INSTITUTIONALIZATION
In Rodriguez, Sanon, and Makin, the courts allowed persons who were not presently institutionalized, but were at risk of institutionalization, to bring claims under Title II of the ADA.280 To date, lawsuits have been filed in at least twenty-one states on behalf of persons with disabilities on waiting lists for community services,281 and the plaintiffs in many of those cases contend that the state’s failure to provide community services places them at risk of unnecessary institutionalization. For example, in Boulet v. Cellucci282 and Benjamin H. v. Ohl,283 the court ruled for the plaintiffs on Title XIX grounds, holding that they were entitled to receive home- and community-based waiver services with reasonable promptness without reaching their ADA claims.
In Fisher v. Oklahoma Health Care Authority,284 the district court granted summary judgment for the defendants on the ADA claims of home- and community-based waiver recipients who asserted that they were at risk of institutionalization, but on factual rather than legal grounds, holding that the waiver recipients had produced no evidence that, in fact, they were at risk of institutionalization. The suit was brought to challenge Oklahoma officials’ decision to limit prescription drug coverage for waiver recipients to five medications per month while nursing facility residents continued to receive unlimited prescription drug coverage. The plaintiffs argued that the limitation, by forcing them to pay for expensive medications out of their own funds, made it likely that they would need to seek nursing facility admission. The court held that the defendants had adequately proved that the plaintiffs could avoid institutionalization by better management of prescription medication and alternative community resources.285 The court also held that immediate relief for the plaintiffs would be inequitable, given the state’s responsibility to provide nursing facility services, which is mandatory under Title XIX. Thus, reducing prescription drug coverage in the state’s “optional” waiver program was reasonable because the state was obliged to provide unlimited nursing facility services.286
In Boudreau v. Ryan,287 the district court dismissed the plaintiffs’ claims under the Americans with Disabilities Act, relying on an interpretation of Title II of the ADA unique to the Seventh Circuit. This interpretation is based on the language of Title II prohibiting discrimination by any “public entity.” The Seventh Circuit held in Walker v. Snyder288 that this language means that ADA claims may be brought only against a public agency and that individual state officials are not proper defendants in an ADA case. Therefore, the Ex parte Young doctrine holding that a suit against state officials is not a suit against the state itself and therefore is not barred by the 11th amendment is inapplicable to Title II cases, and the state’s 11th amendment immunity precludes such suits.
5. PENDING CASES
A number of cases pending in federal and state courts may clarify some of the issues addressed by the post-Olmsteadcourts. The issues presented by those cases include the authority of parents and guardians to reject community placement on behalf of the affected individual; the propriety of the state’s failing even to consider community placement on the ground that the parent or guardian has not expressed an interest in community placement; the adequacy of a state’s efforts to maintain a waiting list that moves with reasonable speed; the benefits and burden of deinstitutionalization to the state; and the question of whether the state maintains criteria and methods of administration that have the effect of discriminating against persons with disabilities.
Many of the ADA integration cases currently pending in federal and state courts raise relatively familiar claims for community integration of institutional residents, although more recently filed cases also include persons at risk of institutionalization in the proposed class. Examples include Davis v. Department of Human and Human Services;289Messier v. Southbury Training School290 (state developmental disabilities institution), Inch v. Humphrey and Griffin291(nursing facilities), Capitol People First v. California Department of Developmental Services292 (residents of state developmental disabilities institutions and persons at risk of institutionalization), Travis D. v. Eastmont Human Services Center293 (state developmental disabilities institutions and people waiting for home- and community-based services), Brown v. Bush294 (residents of state developmental disabilities institutions and persons at risk of institutionalization), and Martin v. Taft.295 Other cases have as their primary focus persons at risk of unnecessary institutionalization because of the unavailability of services in the most integrated setting, for example, People First of Tennessee v. Neel,296 The Arc of Connecticut v. O’Meara,297 and Mandy R. v. Owens.298
To date, in most cases filed by persons on waiting lists for community services that have presented both ADA and Title XIX claims, the courts have granted relief on Title XIX “reasonable promptness” grounds rather than by applying the ADA’s integration mandate. The courts’ application of Olmstead to the current generation of cases will be significant. Some of these cases are relatively complex, both factually and legally. For example, Lewis v. New Mexico Department of Health299asserts claims under the ADA on behalf of a broad range of people with disabilities, including people with developmental disabilities on waiting lists and unnecessarily confined in private ICFs/MR (New Mexico closed its last state-operated ICF/MR in 1997) and people with other disabilities, including elders confined in nursing facilities who would prefer community services and persons waiting for home- and community-based waiver services in the community.300 A recently filed case, Arc of Delaware v. Meconi,301 focuses equally on the right to services in the most integrated setting of people with developmental disabilities confined at the state-operated Stockley Center and people with developmental disabilities on community waiting lists.
Another case filed by institutional residents and persons at risk of institutionalization, Sanchez v. Johnson,302 challenges the state’s payment system for developmental disabilities services, which drastically underfunds wages for direct support professionals compared with persons who do the same work in state developmental centers. The plaintiffs in Sanchez allege that intolerably low wages cause high turnover and endemic vacancies in programs and make it almost impossible to recruit qualified staff. Workers do not stay on the job long enough to acquire the necessarily skills to support persons with significant disabilities. Because community service providers cannot retain sufficient qualified direct support professionals, they are unable to create, expand, and maintain services for all who need them. As a result, people with disabilities remain unnecessarily institutionalized or at risk of unnecessary institutionalization. The plaintiffs assert that in maintaining a payment system based on below-poverty wages, the defendants use “criteria or methods of administration … [t]hat have the effect of subjecting qualified individuals with disabilities to discrimination on the basis of disability.”303The court issued orders certifying the class and denying a motion for intervention by a statewide institutional parents’ organization. In August 2002, in a decision on cross-motions for summary judgment, the district court dismissed the plaintiffs’ claims under the Americans with Disabilities Act. The court held that the plaintiffs had failed to prove that members of the plaintiff class were unnecessarily segregated because of the low wages paid to direct care staff or that the defendants lacked a “comprehensive, effectively working plan” to place institutional residents in the community.
In its finding that California had a comprehensive, effectively working Olmstead plan, the district court ignored evidence not only that the defendants had no such plan in place but also that they had announced their intention to develop anOlmstead plan only after the plaintiffs had filed their motion for summary judgment and the state legislature, in response to pressure from advocates, had directed the state defendants to begin the planning process. Even more illogical was the district court’s finding that a comprehensive, effectively working plan for community placement existed even though for the past several years, more Californians with developmental disabilities had been admitted to state institutions than had been placed in the community. Rather, the district court looked to the defendants’ implementation in previous years of the consent decree in Coffelt v. DDS, in which they had agreed, in response to a lawsuit filed by Protection and Advocacy, Inc., to place more than 2,000 institutional residents in the community. In effect, the district court in Sanchez allowed the defendants to rest not on their own laurels, but on the laurels of the advocates who had won community placement for institutional residents in the past. In so holding, the court ignored its obligation under the ADA to inquire whether present institutional residents had a realistic opportunity to move to the community in the absence of litigation.
In September 2002, the district court in Frederick L. v. Dept. of Public Welfare304 held that although the uncontested evidence showed that the defendants did not have a comprehensive, effectively working plan for placing residents of a state psychiatric institution in the community, the state nevertheless was able to claim the “fundamental alteration” defense.305 The court found that “Defendants are doing what they can with the resources that are in fact available,” and that “absent an increase in funding, there is no way for Defendants to provide the relief sought by Plaintiffs without depriving others of mental health care.” Significantly, the court did not find that residents of the psychiatric institution had a realistic prospect of leaving the institution in the near future, but only that their need for community placement had been identified:
Although [Norristown State Hospital] patients do have to wait for community placements, procedures are in place whereby patients who are ready for discharge are identified, and appropriate individualized discharge plans are developed for them by hospital staff and county representatives, who have no choice but to work within the limits of available, final resources.306
The court’s finding that institutional and county staff “have no choice but to work within the limits of available, finite resources” is true but irrelevant because those persons were not defendants in the lawsuit and did not control the allocation of resources to institutional and community-based mental health services. The question posed by the lawsuit was whether the state officials who were defendants in the lawsuit had fulfilled their legal duty to provide public services to the plaintiffs in the most integrated setting, yet the court ignored this question and, instead, absolved from liability the hospital and county staff who were not defendants in the lawsuit and who worked within the framework of the finite resources allocated to them by the state. The standard applied by the district court is that any reallocation of resources from institution to community is a “fundamental alteration.” If this standard were allowed to stand, it would preclude any effort to enforce the ADA’s integration mandate. The district court’s decision has been appealed.
Of the issues with which the courts have struggled since Olmstead v. L.C was decided, the issue of whether a proposed modification of the state’s programs and services is “reasonable” has caused them the most difficulty. Issues concerning eligibility and nonopposition to community placement have not been entirely uniform, but have generated less difficulty in comparison. The “reasonable modification” inquiry is highly factual and requires examination of the pace at which the state is offering services to persons on waiting lists and the state and federal resources available. In the chapters ahead, we shall assess the states’ responses to the Olmstead decision against the emerging legal standards for measuring compliance with the standards set forth by the Supreme Court.
Responses to Olmstead v. L.C. at the Federal Level
1. INTRODUCTION: THE ROLE OF DISABILITY RIGHTS ADVOCATES IN DEFINING THE REQUIREMENTS FOR EFFECTIVE OLMSTEAD IMPLEMENTATION
In the plurality opinion in Olmstead v. L.C., the existence of a “comprehensive, effectively working plan” that enables waiting lists for community services to move at a reasonable pace is framed as a defense to an ADA claim, not as an affirmative obligation on the part of the states. However, some disability rights advocates concluded after Olmstead was decided that a plan could have value both as an organizing tool and as a device to force states to commit to numerical targets, timelines, and allocation of resources.
One of the earliest responses to Olmstead came from then-Secretary of HHS Donna Shalala in a speech on July 28, 1999, to the National Conference of State Legislatures. Secretary Shalala reminded the conference that Olmstead requires states “to move at a reasonable pace to provide community-based alternatives” and that states can meet this obligation by having comprehensive plans. She offered HHS’s support and technical assistance “[t]o build better systems of supports enabling people with disabilities to live life to the fullest.”307
Just a few days before the Secretary’s speech, at a conference in Bethesda, Maryland, advocates took the first steps toward operationalizing the Olmstead comprehensive planning requirement. The conference, titled “Personal Assistance Services: A New Millennium,” was held on July 23-25, 1999, and co-sponsored by United Cerebral Palsy, Independent Living Research Utilization, the National Council on the Aging, ADAPT, and the World Institute on Disability. It brought together about 120 disability rights activists, leaders of advocacy organizations, and policymakers. A goal of the conference was to create a unified vision for personal assistance services across all disability constituencies and develop action plans to expand and improve personal assistance services in the new millennium. The conference’s Litigation Group focused its discussion on Olmstead implementation.308
The members of the Litigation Group concluded that every state should have a comprehensive implementation plan and that advocates should not wait for HHS to require one. Energized by their success in persuading state governors and attorneys general to remove their states’ names from an amicus brief in Olmstead v. L.C. in support of the state of Georgia,309 the advocates affirmed that organizing efforts showed the value of setting deadlines and set July 26, 2000, as the date by which they expected states to have a plan in place. Conference participants agreed to go back to their own states, convene the key players (Independent Living Councils, Developmental Disabilities Councils, Protection and Advocacy agencies, self-advocacy groups, mental health consumer groups, nursing facility family and resident councils, volunteers, and ombudspersons), hold an initial meeting by September 1, 1999, and contact state Medicaid officials by October 1, 1999. The conference participants agreed that the National Association of Protection and Advocacy Systems (NAPAS) would draft an outline of the key elements of a state plan that would be disseminated widely among advocates around the nation.
Accordingly, on October 1999, NAPAS published a “Template of Key Elements Which Must Be Considered When Developing a Comprehensive, Effectively Working State Plan For Moving People Out of Institutions and Into Appropriate Community Settings.” Reasoning that a “comprehensive” plan must address the need for community services of all persons who are unnecessarily institutionalized or at risk of institutionalization, NAPAS recommended the following:
- States’ planning for Olmstead implementation should include all stakeholders.
- States should assess institutionalized persons’ need for community services.
- States should develop community services and improve the infrastructure of the community system.
- States should develop transition services.
- States should develop tracking systems to monitor individual progress.
- Olmstead implementation plans should contain measurable goals and timeframes tied to resource allocation.
- Implementation plans should provide for quality assurance and resource development.310
Similarly, ADAPT integrated Olmstead implementation into its Campaign for Real Choice, a systematic advocacy effort to support passage of MiCASSA, and developed a checklist, similar to the NAPAS template, against which states’ Olmsteadimplementation efforts could be measured. The following were ADAPT’s conditions:
- The state should create a “Most Integrated Setting” committee to develop a Community Integration plan to implement the Olmstead decision. The committee should have a majority of people with disabilities, their family members, and advocates.
- The Community Integration plan should include assurances that all individuals applying for support services will receive information on all home- and community-based services options.
- A “reasonable pace” should be no longer than 90 days.
- States should contract with advocacy groups throughout the state to identify all individuals who want to get out of nursing homes and other institutions and (1) develop information on home and community options and (2) go into the nursing homes and other institutions to inform people of their home- and community-based services options.
- The plan should contain timetables for getting people out; expanding service capacity by increasing waivers, Personal Care option, or other programs; and development of new services, such as Medicaid waivers and Personal Care option.
- The HCFA and OCR Regional Managers should ensure that Olmstead implementation will occur.311
Against these standards, advocates scrutinized their own states’ planning processes and found them woefully lacking.312In addition to advocating with officials in their own states, disability rights advocates also urged state and federal officials to collaborate with the disability community to develop action plans to transition people from institutions to community living.313
2. THE FEDERAL RESPONSE: THE HHS OLMSTEAD POLICY LETTERS
On January 14, 2000, as a result of extensive discussions and meetings between the secretary of HHS, the director of the HHS Office of Civil Rights, and the disability community, HHS issued guidance on Olmstead implementation planning that was remarkably similar to the guidelines already established by disability rights advocates. The secretary of HHS sent a letter to every state governor emphasizing the import of the Olmstead decision for persons with disabilities who are unnecessarily institutionalized. The letter encouraged the states to develop and implement “comprehensive, effectively working plans” as suggested by the Supreme Court to ensure that individuals with disabilities receive services in the most integrated setting appropriate to their needs. On the same day, HHS wrote to state Medicaid directors encouraging them to work with state human service agencies to foster the integration of persons with disabilities into community life, promote equal opportunity, and maximize individual choice. The agency’s guidelines had much in common with the guidelines previously developed by advocates.
The HHS letter defined a “comprehensive, effectively working plan” in clear, operational terms. In developing such a plan, the state should
- consider the extent to which there are existing programs that can serve as a framework for developing services;
- consider the level of awareness and agreement among stakeholders and decisionmakers regarding the elements needed to create an effective system; and
- consider how this foundation can be strengthened.
A plan for providing services to persons with disabilities in more integrated community settings should
- ensure that qualified persons with disabilities transition to the community;
- ensure that the transition moves at a reasonable pace; and
- identify improvements that can be made to support people with disabilities in the community.
The planning process must ensure that persons with disabilities
- receive assessments to determine how community living might be possible;
- are assessed for their ability to benefit from community living without limiting consideration to what is currently available in the community; and
- are provided the opportunity for informed choice.
The plan should examine the adequacy of the state’s current periodic reviews of institutional residents to determine whether they are
- conducted for residents of all institutional settings, including ICFs/MR, nursing facilities, psychiatric hospitals, and residential service facilities for children; and
- adequate to determine whether institutional residents can be served in a more integrated setting.
The plan should establish similar procedures for persons who may be at risk of unjustifiable institutionalization. In the plan development process, the state should
- involve people with disabilities;
- employ methods that ensure constructive, ongoing involvement and dialogue; and
- establish partnerships with stakeholders to ensure that plans are comprehensive and work effectively.
To remedy unjustified institutionalization, the state needs
- a reliable sense of how many people with disabilities are currently institutionalized and eligible for services in community-based settings;
- adequate information and data systems about institutionalization and eligibility; and
- a willingness to make improvements to data collection systems when necessary.
The state needs to look closely at existing assessment procedures and whether they are
- adequate to identify institutionalized persons with disabilities who could benefit from services in a more integrated setting; and
- adequate to identify individuals in the community who are at risk of placement in an unnecessarily restrictive setting.
The plan should ensure that the state could respond to assessment findings in a manner that is timely and effective. To ensure the availability of community-integrated services to persons who are unnecessarily institutionalized, the plan should
- identify what community-based services are available in the state;
- assess the extent to which these programs are able to serve people with disabilities in the most integrated setting appropriate;
- identify the improvements that can be made in existing services;
- consider how the system might be made more comprehensive;
- evaluate whether the identified supports and services meet the needs of people who are likely to require assistance to live in the community; and
- identify the changes that could improve the availability, quality, and adequacy of the supports.
The plan should look at people who are at risk of unjustified institutionalization and
- evaluate whether the system adequately plans for supporting people who live at home with family; and
- consider whether the plan is adequate to address the needs of people without family or other informal caregivers.
The plan should look at the real-world outcomes of supports and services and how they actually help integrate people with disabilities into the community.
The state should look at funding for the plan. Specifically, the state should
- review the funding sources available under Medicaid and other sources to increase the availability of community-based services;
- consider what efforts are underway to coordinate access to these services; and
- assess the feasibility of organizing these funding sources into a coherent system of long-term care.
Planners should assess
- how well the current system works;
- how it works for different groups (e.g., elders with disabilities and persons with physical disabilities, developmental disabilities, and HIV/AIDS); and
- the changes needed to make services in the most integrated setting a reality for all populations.
The plan should examine what can be done to ensure that people waiting for services
- are able to move off waiting lists;
- receive needed community services; and
- receive those needed services at a reasonable pace.
Plans should honor the principle of informed choice by
- providing opportunities for informed choice;
- providing choices both to persons with disabilities and their representatives; and
- addressing the information, education, and referral systems needed to ensure informed choice.
Finally, the plan should address the infrastructure changes that may be needed to support implementation of the plan. Planners should
- evaluate effective quality assurance systems for community services; and
- consider the planning, contracting, and management infrastructure that will enable placement in the most integrated setting to become the norm.314
Subsequently, HHS issued other policy clarifications to assist states in placing institutionalized Medicaid beneficiaries in more integrated settings. HHS’s Olmstead Update No. 2, issued on July 25, 2000, answered a number of questions the agency had received from states and the disability community. In this memo, HHS affirmed its willingness to provide technical assistance to promise effective implementation of its policy of facilitating the provision of services in the most integrated setting and to provide federal financial participation to states to design and administer Olmstead plans. HHS announced that it was reviewing its own policies, programs, statutes, and regulations to “identify ways to enhance and improve the availability of community-based services.” The memo clarified the role of Olmstead planning in resolving OCR complaints:
Where States engage in planning processes in good faith and at a reasonable pace, OCR may determine it is possible to allow plan development to proceed in lieu of investigation. Where a State or other respondent evinces no intent to undertake planning, or where delays in doing so evidence a lack of good faith, or where States or other respondents utterly fail to involve stakeholders in plan development, OCR may determine it necessary to commence a full-blown investigation. Following investigation, if a violation is found and no resolution is reached, cases may be referred to DOJ for litigation.315
HHS clarified that in the context of a complaint investigation in which plan development seems an appropriate remedy, OCR “typically” would ask the state to demonstrate the pace at which services to persons with disabilities would be provided in the most integrated setting. HHS also clarified that Olmstead applies to all qualified individuals with a disability who are covered by the ADA, including elders, children with disabilities, and persons with a history of substance abuse, and made clear that unjustified segregation would violate not only the ADA but also Section 504 of the Rehabilitation Act of 1973.
In Olmstead Update No. 3, issued on July 25, 2000, CMS issued a number of policy clarifications, most concerning Medicaid coverage of waiver services, including case management, environmental modifications, personal assistance, “nurse-delegated” services, and services provided out of state. CMS also clarified that the Medicare “homebound” requirement does not apply to Medicaid home health services.316
In Olmstead Update No. 4, issued on January 10, 2001, CMS clarified some of the boundaries of the state’s obligations to provide services under the home- and community-based waiver and the relationship between the state’s obligations under Medicaid and its obligations under the ADA and Olmstead. The agency’s interpretations of the state’s obligations under the waiver and its obligation to provide services with “reasonable promptness” have important implications for Olmsteadimplementation.
Update 4 clarified that although a state may set a limit on the number of persons who may receive services under a home- and community-based services waiver, this does not limit its obligation to serve people with disabilities in the most integrated setting, nor does it provide a safe harbor: “If other laws (e.g., ADA) require the State to serve more people, the State may do so using non-Medicaid funds or may request an increase in the number of people permitted under the HCBS waiver.” States may request a waiver amendment to increase the number of persons served at any time. The amendment is usually retroactive to the first day of the waiver year in which the request was submitted.317
Update 4 clarified the relationship between the number of waiver slots requested and the program’s funding appropriation. CMS stated that it has allowed states to limit the number of people to be served to a number derived from the amount of money the legislature has made available and the corresponding federal match, but only if the application so informs the agency. The state must inform CMS of any limit on the number of persons served that is derived from a fiscal appropriation made subsequent to the submission of the waiver application.318
Update 4 clarified that once enrolled in the waiver, a person cannot be denied a needed service that is covered by the waiver, and states are not allowed to place a limit on the number of enrollees permitted access to different waiver services. Although CMS did not set guidelines in this letter for “reasonable promptness” in the provision of waiver services, the agency indicated that in its view, “reasonableness” would vary with the urgency of the person’s need for the service at issue.319
The update addressed the important question of how CMS will review states’ limits on the amount, duration, and scope of waiver services. The agency stated that it would ask “whether the amount, duration and scope of all the services offered through the waiver (together with the State’s Medicaid plan and other services available to waiver enrollees) is sufficient to achieve the purpose of the waiver as a community alternative to institutionalization.” In sum, the “sufficiency” question may be answered only by “a three-way review” of the needs of the target group, the services available to that group under the Medicaid state plan and other relevant entitlement programs, and the type and extent of waiver services.320 The message to states that CMS will examine the adequacy of waiver services to meet the needs of the proposed beneficiaries is a powerful one given the current propensity of some states to seek approval for multiple waivers, each with a different service mix and cost cap.
Although acknowledging that states generally have discretion to amend a home- and community-based waiver to reduce the total number of persons who may be served under the waiver, CMS informed the states that it would take certain “special considerations” into account in reviewing a request for a waiver amendment. First, if the number of waiver eligibles is “a material item in any ongoing legal proceeding” or investigation, the state should notify CMS and the court (in the case of a pending lawsuit) and the HHS OCR (in the case of a civil rights investigation) of the state’s request for a waiver amendment.321 Second, the state must assure CMS that “the health, welfare and rights of all individuals already enrolled in the waiver” (emphasis added) will be protected, including the right to live in the most integrated setting. The state can accomplish this by assuring HCFA that no one will be removed from the waiver or inappropriately institutionalized or that persons removed from the waiver program will receive community services through other programs.322
CMS clarified that states have some flexibility in defining targeting criteria as long as the waiver is limited to one of the three subgroups defined in the statute (aged or disabled, developmentally disabled, and mentally ill), thus encouraging states to broaden the populations served in their waivers.323 Finally, CMS clarified that waiver services may not be used to deny or limit services that are available under the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) children’s health care program, a Medicaid entitlement.
Olmstead Update No. 5, also dated January 10, 2001, is an announcement of the Systems-Change grants, described as additional tools to improve state long-term care systems “so as to fulfill the promise of the ADA.”324 The concept of systems-change grants was borrowed from a provision in MiCASSA that would allow states to receive grants for Real Choice Systems Change
Initiatives to help them change the institutional focus of their long-term care systems and refocus those systems on community services and supports.325 The Systems-Change grants have emerged as the Federal Government’s most significant Olmstead implementation effort to date.
Three types of grants are available. Real Choice Systems Change grants are designed to help states work in partnership with their disability and aging communities to enable people with disabilities or chronic illness to live “fuller, more self-directed lives.” Fifty million dollars was available to the states under this program in 2001-2002.326 HHS also announced that it would allocate $12 to $15 million in Nursing Facility Transition grants and Access Housing grants to enable people of all ages who live in nursing homes to make a successful transition to community living. The agency has notified states that to receive grant awards, state Medicaid agencies should work in partnership with state and local housing authorities to make full use of all applicable HUD programs that benefit low-income elderly individuals and those with disabilities.327
CMS also announced that it would award $5 million to $8 million in state infrastructure grants to help states develop or improve community-based attendant service systems that offer maximum control to individuals with disabilities. The goal of this program is to create systems that support self-determination for people with disabilities. Eligible activities, for example, will include training consumers to recruit and supervise personal care attendants and to understand their fiscal and legal responsibilities as employers.328
Thirty-seven states received grants during the first round of this initiative. Of the $70 million available for the program, about $64 million was allocated to grantees.329 In 2002, another $55 million was made available.330 Although the amounts allocated under the grants have been small, typically $2 million or less for Real Choice Systems Change grants and less than $1 million for the other grant categories, the grants are unique in requiring states to work directly with the disability community. CMS notified applicants that it expects “continuous and active involvement of consumers in project design, implementation, and evaluation.”331 Five grants were awarded to partnerships between states and Independent Living Centers to transition nursing facility residents to the community, and Centers for Independent Living play a direct role in implementing other states’ Nursing Facility Transition grants.332
In a letter to the governors of the states on August 12, 2002, HHS Secretary Tommy Thompson urged continued efforts to overcome the institutional bias in Medicaid programs. Secretary Thompson noted that states already have many affordable community-based options for serving people with disabilities, and he pointed to a new Web site identifying promising practices.
“The President’s New Freedom Initiative builds on our partnership to assure Medicaid eligible individuals with disabilities are served in the most appropriate setting according to their own needs and preferences,” Secretary Thompson wrote. “We believe there is a tremendous opportunity to serve people who meet nursing facility levels of care in their own homes or other community residential settings without increasing costs.” Secretary Thompson noted that a number of states have already developed and implemented programs that serve individuals in community settings rather than institutions, including diversion programs to keep people in the community, transition programs to move individuals from institutional settings to community placements, and program models in which “the money follows the person” to ensure stability for beneficiaries living in the community.
On August 13, 2002, HHS wrote a letter to state Medicaid directors echoing Secretary Thompson’s recommendations and noting a number of “promising practices” employed by the states that have facilitated the movement of institutional residents to the community and enhanced opportunities for community integration:
[T]he Center for Medicaid and State Operations believes there is tremendous potential to serve people who meet nursing facility level of care in private homes or in community residential settings that would be more acceptable to the beneficiary, without increasing costs to the states.
Many states have engaged in activities and developed programs that serve persons in the most appropriate community setting rather than in an institution. These programs and activities, developed under existing authority, have included diversion programs to maintain people in the community, transition programs to actively move individuals from institutional settings to alternative community placements, and program models in which the “money follows the person” to assure stability of community living.333
In other words, HHS informed the states that by using existing federal funding sources appropriately, they could support nursing facility residents in the community without incurring additional costs. In a time of fiscal scarcity and draconian state budget cuts, the significance of this message cannot be overstated. Further, HHS affirmed the principle of “the money follows the person,” so that movement from institutions need not be contingent on the infusion of new funding sources.
The following are examples of the “promising practices” to which HHS drew the states’ attention:
- The Colorado “Fast Track” program, which provides on-site assessment for waiver services and Medicaid eligibility determination within a hospital setting to divert hospital discharges from nursing facility placement.
- Texas’s Rider 37, a state law providing that as individuals “relocate from nursing facilities to community care, funds will be transferred from Nursing Facilities to Community Care Services to cover the cost of the shift in services.”
- Florida’s Long-Term Care Community Diversion Project, a pilot project in four counties in which managed care organizations (MCOs) are paid a capitated rate to provide all Medicaid services, including both home- and community-based services and nursing facility services, to eligible elders so that the MCO has a strong incentives to reduce nursing home placements.
- New Jersey’s Community Choice Initiative, in which 40 state employees are exclusively dedicated to informing nursing home residents and persons in hospitals awaiting nursing facility admission about home- and community-based services and housing alternatives.
- Utah’s program in which representatives from Area Agencies on Aging (AAAs) and CILs visit nursing facilities every six months to conduct on-site resident education about home- and community-based long-term care programs, conduct one-on-one follow-up interviews for interested residents, and, on request, perform needs assessments to determine if the person’s needs could be met using available community resources.
- Vermont’s new waiting list policy for home- and community-based services, which gives priority to nursing home residents, hospital patients awaiting nursing home placement, and people residing at home who are at great risk of institutionalization.
- Washington’s post-eligibility treatment of income rules that allow Medicaid-supported nursing facility residents to use their own income for up to six months-up to 100 percent of the poverty level-to make rent, mortgage, utility, and other payments to maintain their home in the community. Nursing facility residents moving to the community can receive a one-time payment of up to $800 of state-only funds to pay for rent, security deposits, utilities, household goods, assistive technology, furniture, or home modifications.
- Wisconsin’s state fund that enables people moving from nursing facilities to bypass county waiting lists.334
In the August 13 letter, HHS also informed the states that an evaluation was underway of the Real Choice Systems Change grants. In the meantime, however, the agency summarized some of the lessons learned from the states’ experience with the grants:
- Staff who work with nursing facility residents to facilitate transitions should be hired specifically for this purpose and should be highly dedicated to the challenge; people who have lived in institutional settings are especially effective.
- Flexible funding should be made available for people leaving nursing facilities to be used for security deposits, utility setup, moving expenses, furnishings, and other necessary expenses.
- Nursing facility transition programs should be closely coordinated with community-based services programs.
- Transition program staff should work with public housing authorities and private landlords.
- Transition programs should implement aggressive outreach efforts to notify nursing facility residents of the opportunities for receiving assistance with moving back to community life.
- Nursing facility residents should take an active role in planning their own return to community life.335
HHS has made $50 million available to assist states to develop and improve home- and community-based services and plan for Olmstead implementation. Initial awards of $50,000 were made to all states and territories requesting them. These start-up funds will help pay for the planning and public-private partnerships and task forces to advise the states on how to increase services and supports to people with disabilities.
- OTHER HHS INITIATIVES
(a) OFFICE FOR CIVIL RIGHTS
OCR has investigated hundreds of complaints filed with them since Olmstead was decided by persons with disabilities alleging that they are inappropriately institutionalized or at serious risk of institutionalization. An analysis of 334 complaints filed with OCR found that 55 percent were filed by persons with physical disabilities, 23 percent by persons with developmental disabilities, and 22 percent by persons with mental illnesses. (These categories overlapped because some complainants had more than one diagnosis.) In 44 cases, the complainants were of school age. Nursing facilities were the most common residential setting where complainants lived, accounting for 60 percent of all complaints. Another 30 percent of complaints were filed by residents of psychiatric institutions.336
OCR representatives have participated in the Olmstead advocacy training sponsored by HHS, CMS, and the U.S. Department of Education; met with state officials to explain the legal basis for Olmstead planning and implementation; and provided significant technical assistance to the states, including assistance in Olmstead planning and application of HHS standards to state Olmstead plans.337
(b) ADVOCACY TRAINING AND TECHNICAL ASSISTANCE
In 2001, HHS, CMS, and the U.S. Department of Education funded a national conference of experts and a series of regional training conferences titled “Disability Advocacy in a post-Olmstead Environment.” The trainings were designed primarily to prepare disability rights advocates to advance implementation of the Olmstead decision within each state. Secondary audiences included legislators, governor’s office representatives, and other state officials. The training was designed and delivered by Independent Living Research Utilization (ILRU) and the Brain Injury Association, Inc. (BIA), and training topics included the Olmstead decision, consumer direction, personal assistance services, Medicaid policy and practices, related state laws, Olmstead plans, related services and benefits, and exemplary programs and strategies forOlmstead implementation. Each state could send to the training up to eight participants who had to be nominated by disability leaders and demonstrate that they had the backing of a disability advocacy organization such as a CIL. In the second year of the Olmstead project, the core group of participants trained in the first year will receive additional technical assistance and problem-solving support from experts to assist them in implementing the Olmstead decision in each state.338 From the experience of Olmstead implementation at the state level, advocates who have participated in theOlmstead trainings clearly are well equipped to critique their states’ planning efforts and propose constructive alternatives.339
(c) SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA) INITIATIVES
On December 14, 2000, SAMHSA’s Center for Mental Health Services (CMHS) sponsored a meeting of 40 federal agencies, national mental advocacy organizations, consumer groups, and private sector companies to establish a National Coalition to be composed of representatives of the Departments of Health and Human Services, Housing and Urban Development, Labor, Education, Justice, Transportation, and Social Security as well as from the President’s Task Force on Employment of Adults with Disabilities, the Veterans Administration, and community leaders from dozens of national organizations “to promote community-based care for persons with mental illness in accordance with Olmstead v. L.C.” The coalition proposed to lead the development of similar coalitions at the state level that, in turn, would aid in “the design and development of comprehensive community mental health service plans.” CMHS committed $6.3 million to help develop the statewide coalitions, provide training, and support an Olmstead coordinator in each state.340
As of June 2001, 43 states had received grants of $20,000 to support state coalitions and Olmstead coordinators.341 The National Coalition, now called the National and Statewide Coalitions to Promise Community-Based Care, provides technical assistance to state Olmstead coalitions through a team of national consultants. The impact of the Olmsteadcoalitions is apparent at the state level, where several of the coalitions have persuaded reluctant state governments to address Olmstead implementation in more meaningful form.342
SAMSHA is also conducting a $20 million study to determine the effectiveness of consumer-oriented mental health service programs as an adjunct to traditional mental health services.343 Other SAMHSA activities include convening technical assistance conferences and meetings on employment of persons with psychiatric disabilities, involuntary treatment, and electro- convulsive therapy, and establishing a CMHS National Advisory Council Subcommittee on Consumer/Survivor Issues.344
(d) ADMINISTRATION ON AGING
In February 2001, the Administration on Aging launched a National Family Caregiver Support Program funded at $125 million. States can use this program to support elders who are not eligible for Medicaid.
(e) HOUSING INITIATIVES
Without affordable and accessible housing, large numbers of persons with disabilities who are unnecessarily institutionalized will be unable to move to the community. Yet, unlike HHS, which began working with state Medicaid agencies shortly after Olmstead was decided to assist them in incorporating the integration mandate into their delivery of services to persons with disabilities, HUD has not played an active role in fostering Olmstead implementation.345
HUD did, however, launch two initiatives in 2001 to expand housing opportunities for persons with disabilities: the Section 8 Homeownership Voucher Pilot Program for Disabled Families346 and the Project Access Demonstration.347 As implemented by HUD, the Homeownership Voucher Pilot is targeted to persons with disabilities with incomes up to 99 percent of the median income in the area. To be eligible, a household must have an annual income of at least $10,000. Thus, the program targets persons with disabilities who have higher household incomes; the income requirements would have precluded the two plaintiffs in Olmstead v. L.C. from participating in this project. The impact of this promising practice is also limited by the fact that local PHAs are not required to participate or to include persons with disabilities in the home ownership program.348
The second project, Project Access, initially provided 400 rental vouchers in 11 states and a projected 2,000 at full implementation that are being distributed in collaboration with HHS to connect people moving from nursing facilities to the community with Medicaid-funded services. HUD provides rental vouchers and technical assistance, and HHS will use Nursing Home Transition grants or other Medicaid funds to assist people moving from nursing facilities to the community. Some disability organizations were concerned that this program actually took resources from another program at HUD that was serving people with disabilities349 and that it would “direct Section 8 vouchers to a number of settings that fly in the face of the inclusion mandate of the ADA, such as assisted living and residential ‘facilities.’“350
- THE WORK INCENTIVES IMPROVEMENT ACT
Although not a direct response to Olmstead, the Work Incentives Improvement Act was enacted to overcome a barrier to community integration: the loss of public health benefits for Medicaid beneficiaries who wish to return to work. The Act provides that persons receiving SSDI and Medicare benefits who return to work can receive up to six additional years of Medicare benefits. States also have the option to amend their Title XIX state plans to offer Medicaid coverage to persons who, but for their income and resource levels, would be eligible to receive SSI. In return, the state may apply a sliding-scale premium for Medicaid-funded health care services. This should allow persons receiving Medicaid benefits to continue their general Medicaid coverage and to continue to receive whatever services they are receiving under a waiver program. States may also offer Medicaid coverage to individuals with a medically improved disability who lose Medicaid coverage because they no longer meet the definition of disability.
The Work Incentives Improvement Act provides vouchers from the Social Security Administration-called a “ticket to work”-that Medicaid beneficiaries can use to shop for a program from approved providers. Providers will be paid, not on a fee-for-service basis, but for documented outcomes for the person with disabilities. Providers also will be paid an incentive, in the form of a percentage of the federal benefits the person would have been paid, as long as the person they are serving maintains employment. However, providers will not be paid until the person leaves the Social Security rolls. Because the number of SSI and SSDI beneficiaries who find it possible to leave the rolls altogether is very small, providers of employment-related services may be reluctant to risk failure by serving persons with more significant disabilities.351 State Vocational Rehabilitation (VR) agencies may participate in the Ticket to Work program as an employment network. If the VR agency is the designated employment network and has written agreements with providers in the network to provide vocational services, providers can at least be assured of payment for their services. However, VR participation is optional.
- THE EXECUTIVE ORDER
During his presidential campaign, George W. Bush promised that if he were elected, he would issue an Executive Order committing his Administration to implementation of the Olmstead decision.352 After his election, President Bush announced the New Freedom Initiative on February 1, 2000, and repeated his commitment to sign an order that Olmsteadbe fully implemented.353 When the order had not been signed more than three months later, advocates held a demonstration in Washington, D.C., to press the point. Less than an hour after the demonstration began, some advocacy representatives were invited to meet with the director of the President’s Domestic Policy Council and were informed that the Executive Order would be completed and signed within 30 days. Accordingly, President Bush issued Executive Order No. 13217, “Community-Based Alternatives for Individuals with Disabilities,” on June 18, 2001. The Order asserted the Administration’s commitment to implementation of the integration imperative of the Americans with Disabilities Act as interpreted by the Supreme Court in Olmstead v. L.C.
The Order affirmed the commitment of the government of the United States to five fundamental principles concerning the right of persons with disabilities to live in the community:
Community-based alternatives for individuals with disabilities advance the best interests of Americans.
Community-based alternatives should foster independence and participation in the community for persons with disabilities.
Unjustified isolation or segregation of qualified individuals with disabilities through institutionalization is a form of disability-based discrimination prohibited by Title II of the ADA and must be avoided by states unless doing so would fundamentally alter the nature of the service, program, or activity.
The Supreme Court in Olmstead construed the ADA to require states to place individuals with disabilities in community settings rather than institutions whenever treatment professionals determine that such treatment is appropriate, the affected individuals do not oppose community placement, and the state can reasonably accommodate the placement given the resources available to the state and the needs of others with disabilities.
The Federal Government must assist states and localities to swiftly implement the Olmstead decision to ensure that all Americans have the opportunity to live close to their families and friends, to live more independently, to engage in productive employment, and to participate in community life.
The Executive Order requires federal agencies to promote community living for persons with disabilities by (1) providing coordinated technical assistance to states; (2) identifying specific barriers in federal law, regulation, policy, and practice that impede community participation; and (3) enforcing the rights of persons with disabilities. Specifically, the Order requires federal agencies to collaborate to ensure that the Olmstead mandate is implemented in a timely manner. Agencies that work with states are to help states assess their compliance with Olmstead and ensure that federal resources are used in the most effective manner to support the goals of the ADA.
The Order directs federal agencies to “evaluate the policies, programs, statutes and regulations of their respective agencies to determine whether any should be revised or modified to improve the availability of community-based services for qualified individuals with disabilities.” The purpose of the review is to identify affected populations, improve information about community support, and remove barriers to community placement. The review must include consumers, advocacy organizations, and service providers.
Finally, the Order directs the Attorney General and the secretary of HHS to “fully enforce Title II of the ADA.” The agencies are encouraged to work cooperatively with states and use alternative dispute resolution procedures.
Following the Executive Order, the Administration carried out an extensive public comment process to assist the agencies in conducting their self-evaluations. The public comment process was led by HHS through the new Interagency Council on Community Living and launched in an open letter from Secretary Thompson of HHS to all interested parties inviting their input. The agencies gathered information from the public for their self-evaluations through written comments, a national teleconference held on August 15, 2001, a National Listening Session held on September 5, 2001, and studies and policy research. More than 800 individuals and organizations provided comment.
In HHS, Deputy Secretary Claude Allen convened a department-wide task force known as the New Freedom Initiative Group. Each of HHS’s 17 component offices appointed a senior level manager and a key staff person to the group. The deputy secretary then directed all HHS components to conduct separate self-evaluations. Each component was asked to look at its policies, programs, statutes, and regulations and respond to two questions:
Does any policy, program, statute, or regulation inhibit the ability of individuals with disabilities to live in the community?
Can any of these be revised or modified to improve the availability of community-based services for people with disabilities?354
The group met biweekly to review and analyze policies, program administration, laws, regulations, program guidance documents, data systems, research, budget and program planning documents, information about past and current component activities, contract documents, and human resource materials.355
On December 21, 2001, HHS issued a preliminary report on its own actions and those of the Departments of Labor, Education, HUD, Justice, Transportation, and Veterans Affairs as well as of the Office of Personnel Management and the Social Security Administration to fulfill the mandate of the Executive Order. The preliminary report identified barriers to community integration and described the agencies’ proposed solutions.356 The agencies’ final, more detailed reports were released on March 25, 2002.357 The final reports contained few changes from the preliminary report.
- ACTIONS AND PROPOSED ACTIONS BY FEDERAL AGENCIES, AS REPORTED IN DELIVERING ON THE PROMISE
(a) HEALTH CARE STRUCTURE AND FINANCING
The report, Delivering on the Promise, acknowledged the institutional bias of the Medical Assistance Program in which 73 percent of Medicaid long-term care funding goes to pay for institutional care and only 27 percent goes toward home- and community-based services. However, the principal action proposed to address this systemic barrier was the creation of a Medicaid Community Services Reform Task Force within HHS to advise on removing barriers to community integration. HHS did promise a “coordinated package of regulatory or potential legislative improvements” to reduce barriers to community living and institutional biases in the Title XIX program, but, although the proposed changes would result in marginal improvement, they would not squarely address the disproportionate funding of institutional services by Medicaid. HHS proposed to do the following:
- Make home- and community-based waiver renewal less burdensome by removing the requirement that states seek renewal of a Section 1915(c) waiver unless CMS requests renewal because of performance problems.
- Clarify that one-time costs of transition to a community residence may be covered under a home- and community-based services waiver, including such costs as security deposits, initial furnishings, and utility and telephone setup fees and deposits. HHS also promised to allow durable medical equipment, prosthetics, orthotics, and supplies to be furnished to skilled nursing facility residents prior to discharge.
- Clarify that the need for “active treatment” is distinct from level of care and not required to qualify for services under a home- and community-based services or mentally retarded developmental disability (MR/DD) services waiver.
- Allow states to tighten institutional eligibility for hospitals and ICFs/MR without simultaneously narrowing home- and community-based services waiver eligibility.
- Allow states to restrict the disregard of income or resources to people who are eligible for home- and community-based waiver services without applying the disregard to an entire eligibility group, thus giving states more flexibility in administering their Medicaid program.
- Provide guidance to the states to ensure continuity of health coverage for Medicaid-eligible persons in institutions for mental diseases (IMDs) or correctional facilities to ensure that states do not let those persons’ Medicaid eligibility lapse merely because federal financial participation under Medicaid is not available in those facilities.358
HHS also promised to establish a time-limited advisory committee, the Medicaid Community Services Reform Task Force, to be composed of representatives of “all age and target groups within the disability community,” organizational representatives, and government associations, to “advise CMS on other actions that may be advisable to remove barriers and promote community living.” The role of the task force would be to consider improvements to state plan services; consider when family caregivers, spouses, and children would be cost-effective; improve coordination between state Title XIX agencies and other agencies; improve methods of contracting for services and service delivery to promote person-centered planning, peer mentoring, support coordination, individualized budgeting, and consumer direction of services. Not included in its charge was consideration of statutory changes that would remove the Title XIX institutional bias.359
To consumers of mental health services, HHS promised to “issue technical assistance and guidance to improve states’ understanding of their existing options” under Medicaid waivers.360 Of course, these options are limited to waiver services for children and adults older than 64 because younger adults cannot be served in the home- and community-based waiver. The report also did not address the lack of Medicaid funding for home- and community-based long-term support for people with mental illness. In a 2001 report addressing barriers to community integration for persons with mental illness, SAMHSA had recommended establishing such an option,361 but this recommendation was ignored.
On a subject of great concern to persons with significant disabilities for whom state Nurse Practice Acts are a barrier to receiving health-related services in the community, HHS promised to “work with states to advance methods” under which delegation of nursing tasks under Medicaid can be achieved, a commitment that stops short of removing the barrier itself.362
HHS promised to provide simplified model waivers to permit states to offer self-directed services and support for informal caregivers and to seek authorization from Congress to conduct a 10-year demonstration of respite services for family caregivers.363 On May 9, 2002, CMS released two template applications that states may use to simplify their requests for § 1115 demonstration waivers to provide consumer- and family-directed services. Because CMS was already granting § 1115 applications for self-determination waivers, the templates do not create a new program or benefit but merely streamline the application process.364
HHS proposed a statutory change to create a state option enabling presumptive Medicaid eligibility for people determined to need a nursing facility or ICF/MR level of care who are being discharged from hospitals or other institutions to the community. Another statutory improvement would authorize a 10-year home- and community-based services demonstration as an alternative to Medicaid-funded psychiatric residential treatment centers for children.
HHS also promised to establish an Office on Disability and Community Integration. The agency proposed to develop a strategy for addressing quality of care issues in home- and community-based services, which would include establishing defined expectations for home- and community-based services, assisting states to use results of HHS quality reviews of community placements, providing technical assistance to states and HHS regional staff in effective systems design or quality improvement strategies, and implementing new quality assurance and improvement systems suited for services in one’s home.
HHS promised to review the discharge planning policies of institutions participating in Medicare and Medical Assistance to ensure that these institutions provide more effective discharge planning for adequate and appropriate community-based care.
HHS also promised that a plan to achieve appropriate community-based services for youth with special health care needs would be developed and implemented. The only increased funding for community services HHS promised was the initial $70 million in Systems Change grants for community living plus an additional $55 million to be allocated in FY 2002.
The HHS report acknowledged that in written comments and at the National Listening Session, “[i]nstitutional bias in Medicaid was identified as a major barrier by HHS components and all stakeholder groups including state and local governments.” Approximately 35 percent of the consumers, 45 percent of the providers, 52 percent of the advocacy organizations, and 75 percent of the governmental interests who commented identified Medicaid structure and financing as a major barrier to community living.365 HHS framed the solutions it proposed in the March 2002 report as measures to address the institutional bias of Medicaid, but those recommendations plainly ignored the root cause of the institutional bias: the fact that participating states are required to provide nursing facility services and, for states that have opted into the ICF/MR program-as all the states have-institutional services for persons with developmental disabilities, but the states are given broad discretion to design the home- and community-based services and personal care services they will provide, and indeed they have discretion as to whether to provide those services at all. HHS also did not propose to eliminate or reduce the differences in eligibility requirements for institutional and community services that create an incentive for institutionalization. The report did not commit the administration to seek the statutory change in Title XIX that will be necessary to remove these barriers. The closest it came was the weak promise that “CMS will work with states and other stakeholders to consider statutory changes to establish a state plan option for comprehensive HCBS [home- and community-based] services.”366
The final report acknowledged many barriers to community integration of persons with disabilities in federal housing programs. The barriers include
- insufficient supply of affordable and accessible housing;
- the status of private housing providers as “contractors” rather than “recipients” of federal funds so they are not required to ensure accessibility of their services;
- HUD 504 regulations on homeownership that are ignored by HUD offices because they refer only to programs that no longer exist;
- lack of full use of the Federal Housing Administration’s (FHA’s) Title I and 203(k) programs to finance accessibility modifications because eligibility for these programs requires that rehabilitation costs be at least $5,000;
- lack of flexibility within the Section 811 Supportive Housing program to develop more integrated housing with fewer supportive services;
- unavailability of funds for move-in expenses, deposits, and household items for Section 8 voucher recipients;
- absence of data collection requirements that would enable HUD’s Office of Public and Indian Housing to know whether vouchers targeted for persons with disabilities under the Mainstream, Certain Developments, Designated Housing, and targeted Fair Share vouchers have been, in fact, issued to families with disabilities;
- failure of some PHAs to request an adequate number of vouchers to meet the housing needs of nonelderly disabled families or to designate accessible units as “elderly only”;
- shortage of “visitable” units in public housing developments because of a lack of technical knowledge on the part of PHAs and their engineering and architectural consultants;
- lack of enforcement of Section 504 and the Fair Housing Act of 1988 at the design review stage of construction of new public housing to ensure accessibility.367
However, apart from a commitment to update the HUD Section 504 regulation and to require a standardized certification on construction drawings for federally funded public housing projects of the number and percentage of accessible units meeting Section 504 and Fair Housing Act requirements and a proposal to amend Section 811, the actions the federal agencies proposed to address these barriers consist primarily of information and technical assistance to PHAs and seem unlikely to result in a significant expansion of affordable housing.
The HUD report does not mention the Section 232 program, by which HUD guarantees loans to nursing facilities, assisted living facilities, and other congregate facilities. According to a report from ADAPT, HUD paid out $174 million in 2001 for defaulted loans to nursing facilities and $27.6 million to assisted living facilities, some very large in size. Rather than foreclose on the properties and sell them, HUD set up a work group with the American Health Care Association and other “stakeholders” to study the problem.368
To expand the use of Section 8 vouchers, HUD promised to provide technical assistance to local PHAs and “strongly encourage” them to consult with disability organizations. HUD also promised to issue notices to PHAs and to Community Development Block Grant (CDBG) grantees explaining the implications of the Olmstead decision. HUD promised to work with the Department of Justice (DOJ) on investigations and enforcement of developers’ obligations under the accessibility provisions of the Fair Housing Act. (No private right of action exists under these provisions, and thus the United States is responsible for enforcing them.) Actions proposed by other federal agencies (the Departments of Labor, Education, Justice, and Health and Human Services) consisted primarily of interagency collaboration to identify strategies to increase access to housing by people with disabilities.
(c) PERSONAL ASSISTANCE, DIRECT CARE SERVICES, AND COMMUNITY WORKERS
The reports acknowledged the critical shortage of personal assistants and community care workers caused by very low pay and lack of benefits. The principal response, however, was the proposal of the Department of Labor (DOL) to develop a cross-agency/cross-department federal plan “to increase the availability and quality of personal assistants, and to identify options for the education, training and career advancement for personal assistants and other direct care staff and community service workers.” DOL also promised to establish an online registry and to assess the impact of the exemptions within the Fair Labor Standards Act’s (FLSA’s) minimum wage and overtime exemptions for companionship and live-in services on the availability of personal assistance services.369 Although an online registry and repeal of the companionship exemption in the FLSA will be helpful, these actions fall far short of addressing the extremely low pay of personal assistants that is the acknowledged cause of the labor problem.
HHS promised to address workforce shortages by initiating a national demonstration to test the impact of better coordination with the Temporary Assistance for Needy Families (TANF) program and the availability of vouchers for workers to purchase affordable group health coverage. HHS also promised to make available to states a coherent body of information about methods to address worker shortage issues, research these issues, and collaborate with foundations, the private sector, the Department of Labor, and other agencies to “formulate a comprehensive approach to the worker issue.”370 These actions, again, do not directly address the pay issue.
The Department of Education’s Rehabilitation Services Administration (RSA) promised to explore how funds for personal assistance services could become more “consumer driven.” Because the concept of consumer-driven personal assistance services has already been widely demonstrated and evaluated and is being funded with Medicaid dollars, this exploration seems unlikely to result in change.
(d) CAREGIVER AND FAMILY SUPPORT
HHS promised to provide states with a simplified model waiver form for caregiver support and to seek authority to conduct a national respite care demonstration for caregivers of adults and children.371
The Department of Transportation (DOT) promised to renew its FY 2002 budget request, which was not funded, for $145 million to establish two grant programs to promote innovative transportation solutions for people with disabilities. These programs would fund community-based organizations, nonprofits, and transportation providers to expand transportation options. DOT also stated that it is considering a number of proposed regulations to enhance the accessibility of aircraft and enhance safety standards for motor vehicles.372
DOT and several other federal agencies (DOL, Education, DOJ, and HHS) promised to collaborate with other agencies to encourage integration of transportation and other services. DOT promised to revitalize the joint DOT/HHS Council on Access and Mobility,373 and DOJ promised to look for opportunities to participate as an amicus curiae in private lawsuits concerning accessible transportation.
DOL acknowledged the “urgent need to increase the availability of customized employment” (i.e., supported employment) to enable people with significant disabilities to work. To that end, DOL promised to initiate an Olmstead Community Employment Initiative, a coordinated strategy to “ensure that all DOL policies and activities fully address the employment and training needs of people with disabilities who are at risk of institutionalization” or are moving from institutions to the community. DOL also promised to award Olmstead Community Employment Planning and Implementation grants to states that include an employment focus for people with disabilities in their Olmstead state plans and activities and that coordinate “employment and related supports” at the state and local level. The grantees will be consortia of nonprofit advocacy or service agencies and Local Workforce Investment Boards; their activities will focus on increased capacity, coordination, and feedback to DOL on effective Olmstead implementation strategies. However, the Administration requested only $8.3 million to fund these grants in FY 2002. The FY 2002 budget also proposes an additional $6 million to expand the Customized Employment Grant initiative from seven to 17 sites. These amounts are minuscule in comparison with the funding for traditional VR services.374
Additional DOL activities promised in the preliminary and final reports included research and demonstration of promising practices to increase employment and successful transition from school to work, the convening of a Youth Advisory Committee, training and technical assistance, and expansion of grants to enable Local Workforce Investment Boards to systematically review their policies. DOL promised to develop and implement an action plan to promote self-employment and small business development among people with disabilities, including those who wish to return to their communities from institutions.375
RSA of the Department of Education promised assistance and coordination to help state VR agencies improve transition from school to work. RSA also promised to actively enforce the VR regulation that eliminates extended evaluation as a final employment outcome and to ensure that an employment outcome is counted only for a person with a disability who is working in an integrated setting in the community. However, fundamental reform of the VR program to address the barriers it presents to persons with significant disabilities that seek employment was not addressed.
HHS promised to work with other federal agencies to develop strategies on employment issues. The Office of Personnel Management (OPM) proposed to disseminate information about hiring, retaining, and working with persons with disabilities and facilitate “telework” and to revise its guidelines to make it easier for persons with disabilities to apply for federal employment.
The Social Security Administration, the agency responsible for implementing the Ticket to Work and Self-Sufficiency Program, promised aggressive implementation of that program. It also promised to expand its corps of employment support representatives specially trained to assist SSDI and SSI beneficiaries to work and to conduct research and demonstration projects to encourage employment of persons receiving SSDI and SSI.
The Department of Veterans Affairs (VA) promised to consider expanding its authority to pay for assisted living or board and care home services after the evaluation of a pilot program authorized by P.L. 106-117 for VA-paid assisted living. Currently, this is the only exception to the statutory rule that allows VA to pay only for nursing facility services. VA also promised to require its outpatient clinics to submit plans for the provision of mental health services. At present, some clinics do not offer basic mental health services. VA also promised to evaluate and consider expanding its adult day care, homemaker, and health aide program and to reduce its backlog of more than 661,000 claims.
The Departments of Education and Labor made several commitments designed to improve educational outcomes for students and adults with disabilities by disseminating information, providing technical assistance and training, and enforcing transition planning requirements. Of greatest relevance to Olmstead implementation is the commitment of the Department of Education to consider amendment of the provision of the Carl D. Perkins Vocational and Technical Education Act that allows vocational education funds to support state institutions for persons with disabilities.
(i) ACCESS TO TECHNOLOGY
DOL, the Department of Education, and HHS all promised to take steps to improve the availability, affordability, and accessibility of technology to people with disabilities. Beyond DOL’s commitment to expand its DisabilityDirect.gov Web site to provide employment information, the agencies’ promises had little specificity beyond a commitment to plan.
(j) ACCOUNTABILITY AND LEGAL COMPLIANCE
The Departments of Justice, Education, Labor, Health and Human Services, and HUD all committed to increase enforcement, monitoring, and review of the implementation of federal legal mandates that protect persons with disabilities, including the ADA and, specifically, Olmstead-related claims, the Fair Housing Act, the Civil Rights of Institutionalized Persons Act (CRIPA), the Vocational Rehabilitation Act, and the Workforce Investment Act. The agencies also committed to provide technical assistance and information dissemination to enhance implementation of these federal statutes.
(k) PUBLIC AWARENESS, OUTREACH, AND PARTNERSHIPS
The Departments of Justice, Education, Labor, Health and Human Services, and HUD committed to conduct public awareness campaigns, education, training, outreach, and listening sessions and to develop informational materials, public service announcements, and improved lines of communication with people with disabilities, all for the purpose of enhancing awareness of the rights of persons with disabilities and, in particular, the rights articulated in the Olmsteaddecision. Of note is HHS’s commitment to establish a Disability Advisory Committee that includes all the constituencies described in Executive Order 13217 to review and advise HHS on the implementation of solutions to the problem of unnecessary institutionalization and to provide information and advice to HHS on community integration issues.376
(l) INCOME SUPPORTS
The Social Security Administration committed to provide enhanced training to its staff, disability examiners, and administrative law judges in Olmstead-related issues.
(m) GATHERING, ASSESSMENT, AND USE OF DATA
DOJ, DOE, DOL, HHS, and HUD made numerous commitments to collect data on the unmet needs of persons with disabilities, on efforts to meet those needs, on compliance with federal requirements, on promising practices, and on use of federal programs designed to assist persons with disabilities.
(n) CROSS-AGENCY COLLABORATION AND COORDINATION
Finally, DOJ, DOE, DOL, HHS, and HUD made commitments to collaborate in work groups and other partnerships to enhance access to housing, employment, and transportation. Of note was HHS’s proposal that the Interagency Council on Community Living convened by Secretary Thompson in July 2001 be authorized permanently and that the Council develop a strategic interagency plan to expand and promote home- and community-based services and to address the following issues: housing, workers with disabilities, the long-term care workforce, assistance technology, transportation, and education.
A comparison of the barriers to community integration identified by people with disabilities in Chapter II with the actions proposed by federal agencies in “Delivering on the Promise” shows that major barriers, including the institutional bias of Medicaid funding, the severe shortage of affordable housing, and the low wages of personal assistants and direct support staff, will scarcely be affected by these actions. Although many of the actions proposed by the agencies will be helpful to people with disabilities and to states seeking to implement the Olmstead mandate, most seem likely to have only a marginal impact on service systems for people with disabilities. In many cases, the agencies’ proposed actions consisted of further demonstration of consumer-directed approaches to services whose efficacy had already been quite thoroughly demonstrated.
In early 2003, the Bush Administration announced a five-year program beginning in 2004-the “Money Follows the Individual” Rebalancing Demonstration-to enable people with disabilities to move from institutions to the community. The program would provide for one year of 100 percent federal funding for home- and community-based waiver services for a person leaving an institution, after which the state would agree to continue to provide services for the person at the regular Medicaid matching rate. The Administration will seek $350 million to fund the program in 2004, with $1.75 billion in proposed funding over a five-year period.377
Overview: The States’ Responses to Olmstead v. L.C.
This chapter examines responses at the state level to Olmstead v. L.C. and to HHS’s instructions to the states concerning the development of “comprehensive, effectively working plans.” Although the experiences of the states vary widely, each state has its own unique story and approach to Olmstead implementation. In Chapter VI, we examine the experiences of 10 states (Arizona, Florida, Illinois, Michigan, Mississippi, Nevada, New Hampshire, New York, Texas, and Washington) in more detail. This chapter summarizes the status of implementation in the other 40 states and the District of Columbia.
This chapter summarizes the progress of Olmstead implementation on a state-by-state basis (with the exception of the states that will be analyzed in depth in chapter VI). We shall discuss the planning process; the progress the state has made in community integration since Olmstead v. L.C. was decided; and state “systems change” activities, that is, efforts to redesign the state service systems to enhance choice, independence, self-determination, and community integration. Collectively, these activities are indicators of the states’ overall compliance with Olmstead, including the states’ compliance with HHS’s planning instructions; movement to the community from public and private institutions, nursing facilities, psychiatric facilities, and other types of institutional settings; and reform of service delivery systems to remove barriers to community living.
(a) THE PLANNING PROCESS
A broad-based stakeholders’ group, the Olmstead Core Working Group, is drafting a plan to be called “Sweet Home Alabama: Under Construction.” The lead agency for Olmstead planning is the Long Term Care Division of the state Medicaid agency. Other stakeholders involved include officials from the Departments of Mental Health, Human Resources, and Public Health as well as the Governor’s Office on Disabilities, provider organizations, consumer advocates, and persons with disabilities. Each of four planning subcommittees (Needs Assessment, Best Practices, Consumer, and Resource Development) is chaired or co-chaired by a stakeholder.378 The steering committee charged with developing the plan, including representatives of the governor, the commissioner of Health and Human Services, and the Alabama Mental Health Planning Council. Each of the four subcommittees included two consumers, two family members, two mental health advocates, a representative from the HHS commissioner’s office, a representative from the community services division, two developmental disability facility representatives, two community service providers, and representatives from several advocacy groups.
The initial plan included timelines for assessments, and the state agreed to extend to persons in nursing facilities or at risk of institutionalization the assessment procedures developed in a January 2000 settlement in Wyatt v. Sawyer for persons with mental illness and developmental disabilities. The planning group asked the Department of Rehabilitation Services’ Independent Living Unit to identify specialists who can identify persons who are unnecessarily institutionalized or at risk.379
(b) PROGRESS IN COMMUNITY INTEGRATION
In 2000, 614 persons lived in Alabama’s state developmental disabilities institutions and another 930 persons with developmental disabilities lived in nursing facilities. These numbers have declined by only 4 percent since 1998.380 In its most recent available annual report, the state’s Division of Mental Health and Mental Retardation reported an average reduction in state psychiatric beds during FY 2000 of 529 out of 4,465; however, it was not stated whether this affected the 760 residents of state psychiatric facilities who had been institutionalized there for more than a year. The state is committed to placing 300 persons from state mental health and developmental disabilities institutions by 2004, which represents a reduction of 13 percent.381
In 2001, Alabama’s nursing home residents numbered 23,538, and the state was 20th in the nation in nursing facility residents measured as a proportion of the total population age 65 and older. However, Alabama experienced a 7 percent increase in the number of nursing facility occupants from 1996 to 2001, ranking seventh in the nation in nursing facility population growth.382
(c) SYSTEMS CHANGE ACTIVITIES
Alabama has received a Real Choice Systems Change grant for a target population of “persons with disabilities regardless of age or type of disability.” The plan specifically includes children in residential treatment. The focus of the Systems Change grant is information dissemination and service coordination. The state plans to develop a community-based information and referral clearinghouse; develop and implement a Service Coordination Core Training Module to cross-train medical service coordinators; implement a single point of entry for home- and community-based services or enhanced coordination; support person-centered planning for consumers with developmental disabilities through training and mentoring; establish a process for consumer input for persons with developmental disabilities; expand the Psychiatric Rehabilitation Model to all community mental health centers and all units of state hospitals over three years; develop a person-centered assessment tool as the basis for a consumer-directed system of senior services; establish a permanent Disability/Aging Policy Advisory Group within the Medicaid Agency’s Long Term Care Division to formalize the mechanisms for enhanced consumer input and enhanced coordination of services; develop advocacy and informational materials to educate consumers, family members, policymakers, and others concerning the state’s Olmstead plan; and establish an Outreach and Education Unit within the Medicaid Agency’s Long Term Care Division. The goal of plan activities is enhanced access to home- and community-based services through improved information dissemination and service coordination; creation and expansion of systemwide opportunities for consumer choice and control; and expansion of resources through effective planning, advocacy, and education.383
Although these are important goals, they do not address the significant systemic barriers to community integration in Alabama identified in reviews of Alabama’s waiver programs in 2001. The reviews concluded that the range of long-term care services in Alabama is very narrow and that the state makes only modest use of available federally funded service delivery options. The state’s Medicaid home health benefit is quite strictly medical in its orientation and has an absolute limit on the number of visits per year that makes it difficult for it to serve as a long-term care service. Although the Department of Rehabilitation Services offers a very flexible set of services through its own small programs and through the homebound Medicaid waiver, the target population for these services is limited to the nonelderly population. The Medicaid waivers do not offer consumer-directed care and rely on agencies to deliver services. They do not cover medical services that are not covered under the regular Medicaid program, such as home oxygen, nor do the waivers eliminate the widespread restrictions on amount, duration, and scope in Medicaid benefits, such as the limitation to 16 hospital days a year. The number of agencies involved in providing long-term care services (policy and administration of these services are spread across four agencies) causes duplication of effort.384
The reviews further concluded that the political power of the nursing home industry is a significant barrier to shifting funds from nursing facilities to community-based programs:
Especially in comparison with the home care association and consumer advocates for older people and younger persons with disabilities, the nursing home association is a highly organized, well-financed trade association with strong ties to the legislature, while the home care association and consumer advocates for older people and younger people with disabilities are not as well organized or connected. The nursing home industry is not opposed to noninstitutional services and does not view them as a major competitor (in part because there is excess demand for long-term care), but nursing homes have successfully obtained yearly Medicaid rate increases that have absorbed a substantial portion of the Medicaid expenditure growth that could pass the legislature. Because of their political power, repeal of the Boren Amendment, which set federal minimum reimbursement standards for nursing homes, by the Balanced Budget Act of 1997 has had little impact. State observers report that efforts to reallocate funds from nursing homes to home and community-based services as has been done in Oregon and Washington would be opposed by the industry and are given little chance of enactment.385
Information dissemination cannot overcome these significant barriers. In sum, neither the Olmstead planning process nor the Systems Change grants squarely address Alabama’s most significant barriers to deinstitutionalization.
(a) THE PLANNING PROCESS
Alaska has not formed an Olmstead planning group or developed an Olmstead plan, although the state has designated anOlmstead contact person who attended the Olmstead coordinator training sponsored by CMHS. State officials reportedly consider that the planning mechanisms already in place are sufficient to support implementation of Olmstead. Alaska is committed to implementing a statutorily required Comprehensive Integrated Mental Health Plan; a Division of Senior Services Systems Change grant; a Nursing Facility Transition grant; an Integrated Substance Abuse and Mental Health services plan; an action plan developed by a long-term care committee; and a system improvement plan for assisted living services. The state also plans to identify the services needed to reverse the exodus of children and youth going out of state for residential psychiatric treatment services; the in-state capacity required; and the actions required to develop the needed capacity to serve as many children and youth as possible within their home communities.386
(b) PROGRESS IN COMMUNITY INTEGRATION
Alaska has no remaining developmental disabilities institutions, and only six persons with developmental disabilities lived in nursing facilities in 2000.387 The state’s total nursing facility population in 2001 was only 638, and the state ranked 32nd in the nation in the population of nursing facilities expressed as a percentage of the population age 65 or older. However, Alaska was 15th among the states in the rate of increase in the nursing facility population from 1996 to 2001,388 and Medicaid spending on nursing facilities increased by 48 percent during this period,.389 The number of children in psychiatric facilities increased during the same period from 38 to 66, and the number of adults from 15 to 81.390 Medicaid spending on inpatient mental health services showed corresponding increases during 2001 (19.2 and 76.6, respectively).391 The state Medicaid agency’s Medical Care Advisory Committee has not identified deinstitutionalization as a policy priority for 2003.392
(c) SYSTEMS CHANGE ACTIVITIES
Alaska began to implement a consumer-directed program of personal assistance services in October 2001 that enables persons with disabilities to hire, train, and supervise their personal assistants with the aid of a fiscal intermediary. The state is using its Community-Integrated Personal Assistance Services and Supports grant to provide training and technical assistance to consumers and providers in consumer control of personal assistance services.393 Alaska also has a Nursing Facility Transition grant that will be used to identify nursing facility residents who wish to transition to the community, assess their needs for transition services and community services, convene individual planning teams for persons who wish to move, and coordinate with Division of Senior Services staff to develop the needed community services.394
Although Alaska’s institutional populations are relatively small, the state has not responded to Olmstead by taking steps to reduce institutional populations. Indeed, the trend is in the opposite direction.
In May 2000, the Arkansas Department of Human Services (DHS) established an Olmstead Working Group in response to a governor’s executive order. At Governor Huckabee’s direction, DHS created a group called the Governor’s Integrated Task Force (GIST) to provide input into the plan. The Working Group released a preliminary report in February 2001.
In Arkansas, Olmstead planning “kicked off a rancorous debate as advocates for [people with disabilities] who want to live at home squared off against those supporting institutional care.”395 The preliminary report of the Olmstead Working Group includes a candid analysis of the institutional bias of services in Arkansas, noting that neighboring Kansas spends 47 percent of its long-term care dollars on community services compared with Arkansas’ 26 percent. As an example of an existing program that could be built on, the planning group singled out the Independent Choices program, which currently allows about 2,200 personal assistant recipients to exchange personal care services for a cash allowance.396 The group also noted that caps on the developmental disabilities home- and community-based waiver ($160 a day compared with a maximum of $225 a day for a state institution), the Alternatives waiver for adults with physical disabilities, and the ElderChoices waiver ($29,000 annually with a requirement that persons who need more than eight hours a day of services cannot use these waivers as their sole source of support) made it very difficult for persons with complex needs to receive services in the community.
The Working Group found that about 1,000 persons with developmental disabilities living in the community were waiting for home- and community-based waiver services while the waiver program was able to process requests from only about 50 persons a month. The group also found that about 1,000 persons with mental health diagnoses were living in residential care facilities, funded in part by the Medicaid personal care option.397
The preliminary report of the state’s Olmstead Working Group recommended that the state provide periodic assessments of all persons covered by Title II of the ADA, give people with disabilities the option of receiving home- and community-based services when recommended, and develop a process for gauging a person’s choice of services.398 GIST is charged with identifying how and by whom the assessments will be performed, with the concurrence of the Arkansas DHS. The assessment process was first to be tested in a pilot project.399 The proposed timeline calls for identifying “target population, numbers and location” and for determining “what steps are necessary to close the front door to inappropriate institutionalization.” The planning group is committed to addressing quality assurance.400
The draft recommendations of GIST-115 altogether-were released in summer 2002. GIST then voted for 10 priority recommendations, which are contained in a draft plan published on October 14, 2002. After public comment, a final draft with comments will be published.401 The following are GIST’s 10 priority recommendations:
- Address issues related to the Nurse Practice Act.\
- Restructure mental health service delivery.\
- Develop a Web site listing consumer services.\
- Use existing housing funds to finance integrated housing facilities.\
- Provide information to applicants about alternatives to institutions.\
- Facilitate transitions from institutional settings to the community.\
- Reduce waiting lists for home- and community-based waiver services.\
- Reduce the response times for obtaining home- and community-based waiver services.\
- Increase consumer direction for waiver and state plan services.\
- Advocate for mental health parity for health insurance.402
The plan contains no timelines or numerical targets. The original list of 115 recommendations read more like a “wish list” than a comprehensive plan. The draft plan shares this lack of cohesiveness, and some of its priority recommendations are basically a list of projects rather than a blueprint for systems change. For example, the plan for restructuring mental health service delivery reduces to six projects that the Arkansas DHS has decided to work on in response to GIST’s recommendations: (1) increasing funding for adult acute inpatient services, (2) shifting funds to children’s outpatient services, (3) improving forensic services, (4) working on commitment laws and parity issues, (5) improving standards and accountability at psychiatric hospitals, and (6) working on diversity issues.403 Not only are these projects not connected in any systematic fashion, but most of them have little to do with creating community services or enabling residents of psychiatric institutions to move to the community.
The section of the plan on facilitating transitions from institutions focuses on identifying people who “choose to live elsewhere.” The Arkansas DHS has contracted with the Council on Quality and Leadership to interview a random sample of about 300 persons living in Arkansas nursing facilities and ICFs/MR. The interviews will identify specific individuals who would prefer to live in the community and would benefit from community placement. The interviewers will then refer those persons to entities that can help them transition. The results of the survey will be used to determine whether a statistically significant percentage of institutional residents would choose to live in the community and whether assessing all institutional residents for their desire to move would be “cost effective.”404 This process will limit drastically the number of persons who will have opportunities to move to the community, especially from the Human Development Centers (the developmental disabilities institutions). The process is inconsistent with Olmstead’s mandate to identify all persons who can handle and benefit from community placement, not just those who can express an affirmative desire to do so. It is also inconsistent with the recommendations in the state’s preliminary Olmstead report. Further, if the state should decide that the process has not been cost-effective, that is, the percentage of institutional residents who have expressed a desire to move is too small to justify a more global assessment, then no one other than some percentage of the original 300 will have the opportunity to move.
As part of the goal of facilitating transition from institutions, the plan recommends “creating new roles for the Human Development Centers.” Projects to carry out this recommendation include locating community services on the campus of the institution. Classifying such activities as “facilitating transition” when, in fact, they are designed to maintain the institutions stands Olmstead on its head.
Even states that have a relatively inclusive planning process have done little to inform people with disabilities aboutOlmstead planning and implementation. To its credit, the Arkansas group has consistently emphasized public awareness of Olmstead, and the recommendations in the draft plan reflect that. The Arkansas planning group recognized, in its initial report to the governor, that “The commitment to inform Arkansans of the effect of this plan must be made if people with disabilities are to have a real choice about where and how to live,” and that disseminating information about the planning process would be a challenge because existing media channels were unlikely to consider Olmstead planning a newsworthy event.405 The group took a creative approach to public awareness, using regional “Big Tent” meetings, specialized newsletters, and Web sites to reach the different disability constituencies.406
(a) PROGRESS IN COMMUNITY INTEGRATION
According to data collected by the National Association of State Mental Health Program Directors (NASMHPD), Arkansas has only 184 inpatient psychiatric beds, and no one living there had lived in a psychiatric facility for more than a year.407However, the number of persons in state developmental disability institutions has been virtually constant since 1990. In addition, there were 934 persons with developmental disabilities in nursing facilities in Arkansas in 2000. Overall, the number of persons with developmental disabilities in public and private institutions in Arkansas declined by only 4 percent from 1998 to 2000.408
In 2001, 18,677 persons lived in Arkansas nursing facilities, making the state 10th in the nation in nursing facility population expressed as a percentage of the population as a whole age 65 and older. Arkansas has reduced nursing population by 10 percent since 1996, a significant decrease compared with the rest of the nation.409 However, Medicaid expenditures for nursing facility services, already very high in 1996, increased by 25 percent between 1996 and 2001.410 A recent report by the Arkansas Association of Area Agencies on Aging found nearly 2,900 elders waiting for in-home care and more than 7,000 waiting for home-delivered meals and other services.411
(b) SYSTEMS CHANGE ACTIVITIES
Arkansas has a Community-Integrated Personal Assistance Services and Supports grant; however, it is limited to persons with developmental disabilities. The grant will be used to develop an Arkansas Department of Developmental Services (DDS) advisory council composed of consumers and families, provide information on a Web site and handbook, develop an advertising campaign for recruiting direct support professionals, and study and develop new service delivery options, including fiscal intermediaries and community boards.412
Arkansas also has a Real Choice Systems Change grant for adults age 19 and older. The project will examine strategies to recruit and retain in-home workers, develop a Medicaid/Medicare integrated system, provide technical assistance in consumer self-determination, and develop an assessment process based on consumer preferences.413
(a) THE PLANNING PROCESS
In April 2002, the Health and Human Services Budget Subcommittee of the California Senate adopted language in a trailer bill requiring the California Health and Human Services Agency (CHHSA) to create an Olmstead plan. The committee’s action was the result of intensive advocacy by the Coalition of Californians for Olmstead (COCO), a broad cross-disability coalition of consumer and advocacy organizations.414
The National Conference of State Legislatures’ (NCSL) March 2001 findings on California suggested that the state had represented to the NCSL that the Long Term Care Council (LTCC) of the CHHSA would serve as the Olmstead planning group. However, in its Two Year Olmstead Progress Report, NAPAS reported that California was not, in fact, developing anOlmstead plan:
The Long-Term Care Council, which was represented to NCSL as an Olmstead Task Force, has in fact not been given a directive to develop an Olmstead plan. The LTC Council’s only written document is a vision and mission statement supporting the provision of quality long-term care. This document does not mention the Olmstead decision and its structure does not directly involve consumers of long-term care services or their advocates.
COCO informed NAPAS that it had tried to work with the LTCC for over a year, but that the LTCC “has failed to identify itself as the body coordinating Olmstead planning and therefore there is confusion and disagreement about its goals and mission.”415
In April 2002, lawyers representing the California DDS had represented in a brief filed in Sanchez v. Johnson, a case in federal district court challenging the low wages of direct support professionals working in the community, that the state had a “comprehensive, effectively working plan” consistent with Olmstead requirements. However, representatives of COCO testified in a hearing before the Health and Human Services Budget Committee that California “has no timetable for a plan, much less a timetable for actually moving people from institutions to the community.”416 The subcommittee adopted the directive that CHHSA begin developing a plan, and a few days later, at a meeting of the LTCC, althoughOlmstead planning was not on the agenda, the director of DDS proposed that the state begin to develop an Olmsteadplan. The LTCC voted to develop a process for Olmstead planning by its next meeting in late July.417
According to COCO, prior to the Senate subcommittee’s action, the state’s efforts in community integration of people with disabilities and elders, especially those who live in long-term care facilities, were “dismal.” Plans to assess institutional residents for community service needs were extremely limited as well. Although the LTCC received a federal grant in 2002 to develop an assessment tool and process for nursing homes, the grant proposed to assess 650 of the more than 65,000 Medicaid-funded nursing facility residents over the next three years and contained no goal for assessing people in psychiatric institutions. Despite the statutorily required person-centered assessment process for people with developmental disabilities, people in institutions are often determined “not ready” to move because of the lack of resources in the community.418
In September 2002, the CHHSA extended an invitation to all interested stakeholder groups, individuals with disabilities, and elders to participate in a series of work group meetings to help develop the state’s Olmstead plan. The state announced that it would designate those persons who wish to participate in these work groups as “Real Choice Consultants” so they could receive travel reimbursement. The state also announced that it would sponsor a series of community forums throughout the state to receive input from persons with disabilities and others.419
A draft plan was released in January 2003 and was to be presented to the legislature in April 2003. It is basically a “plan to plan,” and its recommended future actions include such basic steps as identifying the data needed to assess persons in institutions and developing needed community services. The plan proposes to identify, beginning in June 2003, all persons living in publicly funded institutions and to identify for each person the services and supports that would enable him or her to live successfully in an integrated community setting. The plan recommends that the state identify all persons who do not object to community placement and for whom the assessment team has identified community placement as a “feasible option.” The plan also proposes to identify the gap between existing services and consumer needs, that is, the number of affordable, accessible housing units needed to enable people who currently are institutionalized to transition to the community.420
These are positive steps. Also positive is the plan’s commitment to make peer support and independent advocates available to assist in assessments and to base the determination of the most integrated setting based on the person’s needs and desires for community services and not on the current availability of services.421 But the time frames for these preliminary activities are far in the future. The council does not propose to review existing discharge planning procedures until July 1, 2003,422 or to recommend improvements in existing assessment procedures until fall 2003.423 The council proposes to prepare “a conceptual design for a comprehensive assessment and services coordination system for individuals placed in, or at risk of placement in, publicly funded institutions.” However, the design will not be produced until April 2004.424
The plan sets no time frames or targets for movement of people on waiting lists; indeed, the plan is not clear as to whether people who are unnecessarily institutionalized should be considered as on a waiting list for community services. The state agencies represented on the LTCC are not asked to report on the status and movement of their waiting lists until fall 2003.425 Further, the plan contains many caveats that its recommendations may not be implemented because of California’s staggering budget shortfall, estimated to be more than $20 million.426
The most impressive component of the California plan is the section on housing, which plainly reflects input of state housing and community development agencies or others with expertise in housing. The plan proposes that the California Department of Housing and Community Development (HCD) develop a database of housing resources available to persons with disabilities in each city and county, including the numbers of Section 8 vouchers, the numbers of accessible subsidized housing units, and other relevant data. HCD will require that ConPlans reflect Olmstead goals as a condition of certification, will develop a Universal Design/Visitability Ordinance for adoption by local governments, and will award state housing dollars only to projects that reserve ground floor units for persons with disabilities and require all apartments to be convertible for use by persons with disabilities.427
In all, however, the plan, by postponing even an analysis of the barriers to community integration for six to nine months, seems designed more as a defense against litigation than as a serious effort to remedy unnecessary institutionalization.
(b) PROGRESS IN COMMUNITY INTEGRATION
Institutional populations in California are very large. The 2000 census reported 15,950 institutionalized children, 12,922 adults between the ages of 18 and 64 living in nursing facilities and another 21,359 living in other institutions, and 114,909 institutionalized elders. Although California’s nursing home population of 105,923 is the second highest in the nation (after New York), it is lower than the median for the United States as a whole when expressed as a percentage of the total population age 65 and older.428 Medicaid spending on nursing facilities rose by a relatively modest 26 percent between 1996 and 2001.429
Although more than 2,000 persons with developmental disabilities left state institutions to move to the community during the mid-1990s under the consent decree in Coffelt v. Department of Developmental Services, by 1998 movement from institutions had virtually come to a halt. In 2000, 3,876 persons were in state institutions and another 4,887 in nursing homes, private ICFs/MR, and other private institutions.430 Discharges are now matched by a virtually equal number of admissions. In 2001, 2,247 Californians institutionalized in state psychiatric facilities had lived in those facilities for more than a year.431
(c) SYSTEMS CHANGE ACTIVITIES
California has not received a Systems Change grant. In the Olmstead training sponsored by ILRU, California advocates demanded numerous improvements in the services system: In-home support workers should receive higher wages and benefits; in-home support service hours must not be capped; the state should apply for more aggregate waivers, and home- and community-based waivers should reflect California’s population, with more waivers for persons with physical disabilities and seniors; counties should be held accountable for their housing plans and should be fined for not having safe, affordable housing and rewarded for having it; and the state should streamline disability services so there is a single point of entry and it is not so difficult to coordinate the various agencies providing services.432 Similarly, COCO asked that the planning process include the development of appropriate assessment tools for people in institutions or at risk of institutionalization, expansion of community support infrastructures, expansion of affordable housing, enhanced quality assurance, and reallocation of resources to move people who want to and can move from institutions into the community.433
Californians with disabilities have filed several lawsuits to challenge the lack of movement from institutions: Davis et al. v. Department of Health and Human Services, which challenges the City of San Francisco’s decision to rebuild Laguna Honda, a 1,200-bed public nursing facility, and asks that the defendants be ordered to conduct assessments, identify the long-term care needs of those they serve, and determine whether their needs can be met in an integrated, community-based setting;434 Capitol People First v. DDS, a post-Coffelt lawsuit that challenges the inappropriate institutionalization of persons with developmental disabilities in state institutions; and Sanchez v. Johnson, which challenges the great disparity in wages paid to direct support professionals who work with persons with developmental disabilities in the institutions and the wages paid to those who perform comparable work in the community.
(a) THE PLANNING PROCESS
At an Olmstead training sponsored by ILRU, most of the participants, Colorado advocates representing ILCs, Atlantis/ADAPT, Colorado Protection and Advocacy, and the Colorado Cross-Disability Coalition-a statewide organization whose director is coordinating grassroots Olmstead-related activities in Colorado-reported that they were actively involved in the Olmstead work in their state, although only one of several proposed planning groups was active as of that date.435By April 2002, each of the state agencies for Developmental Disabilities, Mental Health, Health Care Policy and Financing, and The Children’s Division of the Department of Health and Human Services was reported to be developing its own plan, and the four plans were intended to be combined into a single plan with common themes.436 According to the NCSL, the draft plans will be released in 2003.437
(b) PROGRESS IN COMMUNITY INTEGRATION
In 2000, Colorado had only 147 persons with developmental disabilities left in state institutions, but 270 persons with developmental disabilities in nursing facilities. Institutional populations in developmental disabilities decreased by 64 percent from 1990 to 2000, and between 1990 and 1997, the state reduced the population of its large private ICFs/MR to zero.438
The long-term population of Colorado’s state psychiatric institutions is also quite small. At the end of 2001, only 44 residents had been there for more than a year.439
In 2001, 16,885 persons lived in nursing facilities in Colorado, although the state ranked below the median (29th) in nursing facility population when expressed as a percentage of the population as a whole. The number of nursing facility residents declined by 2 percent between 1996 and 2001,440 and Medicaid expenditures for nursing facility services increased only modestly during the same period, by 18 percent.441
Colorado advocates have identified the following barriers to community integration: low reimbursement; no providers in some areas of the state; too much provider control because of restricted access; lack of consumer-directed models; housing cost; a provider-driven budget process; and waiting lists for the developmental disabilities and children’s model waiver. In addition, the advocates cited as barriers the strength of the nursing home lobby and a legislative and executive focus on acute care issues rather than long-term care; the complicated authorization procedure for home health services; and eligibility determinations that take too long and thus impair the effectiveness of a fast-track hospital discharge program capable of diverting people from nursing facilities.442
(c) SYSTEMS CHANGE ACTIVITIES
Atlantis/ADAPT leaders Mike Auberger and Autumn Gold are subcontractors for Colorado’s Nursing Facility Transition grant. The project will establish 10 support networks based in Independent Living Centers, inform 1,200 nursing facility residents of their right to receive services in the community, identify barriers to transition, and establish a state infrastructure and model transition process.443
As in other states, Colorado’s worsening fiscal situation has threatened to make Olmstead implementation problematic; however, the strength and unity of the disability movement in Colorado has helped advocates resist deep budget cuts. In late July 2002, the state proposed a 30 percent cut in Medicaid-based personal assistance services. As a result of unified resistance and direct action from the disability community, the state reduced the cut to 5 percent, which the disability community still would not accept.444 By the beginning of 2003, the state’s worsening budget situation led the governor preliminarily to approve a 1.2 percent cutback in community programs for adults with disabilities that will preclude the development of new community services for 663 adults on waiting lists for residential services and others who were slated to move from nursing facilities.445
(a) THE PLANNING PROCESS
Connecticut’s Olmstead planning process was unusual in that it grew out of a long-term care planning process established by the legislature and housed in the Department of Social Services (DSS), and the state Medicaid agency, and intended to focus on the needs of elders. The planning group, the Long Term Care Planning Committee, was formed in 1998 and composed of legislators and representatives of the relevant state agencies in equal numbers.446 After the Olmsteaddecision came down, DSS and the Office of Policy Management concluded that the state should develop a comprehensive community integration plan for persons with disabilities, broadened the Long Term Care Planning Committee, and in March 2000, added an advisory committee, the Community Options Task Force, which was co-chaired by representatives of DSS and the Connecticut Council of Persons with Disabilities. The task force included representatives of ADAPT; The Arc, Connecticut; the Brain Injury Association; the State Independent Living Council; People First of Connecticut; and other disability groups. Its role was to provide advice to the Long Term Care Planning Committee and help develop the state’s plan for Olmstead implementation.
In March 2002, the Long Term Care Planning Committee published a document titled Choices Are for Everyone. The plan describes the services available through the different service systems and in different areas of the state447 and calls for converting existing funding streams that are segregated or designated particularly for disability groups into funding streams that are assigned to each individual who needs support. The plan contains a recommendation that money will follow the person.448
However, funding for numerical targets and the many ambitious proposals to remove barriers to community integration suggested by members of the Community Options Task Force are not reflected in the plan because the Long Term Care Planning Committee refused to set measurable goals for community integration. Accordingly, the Community Options Task Force produced a Supplementary Report of its own that it presented to the governor. The Planning Committee’s next task is to present the governor and the legislature with an action plan by the end of 2003 to implement Choices Are for Everyone.449
(b) PROGRESS IN COMMUNITY INTEGRATION
In 2001, 29,166 persons lived in nursing facilities in Connecticut, and the state had the third highest nursing facility population in the nation when measured as a percentage of the population as a whole age 65 or older. However, Connecticut made better than average progress from 1996 to 2001, reducing nursing homes population by 3.4 percent.450From 1996 to 2001, Medicaid expenditures on nursing facility services increased by 22 percent.451 According to a survey of policy directions among the states in long-term care conducted by the NCSL, Connecticut state officials and legislators state that increased reimbursement for nursing facilities and assisted living facilities remain among their major priorities.452Compared with the size of the nursing facility population, the number of long-term residents of state psychiatric facilities is relatively modest: 228 in 2001.453
A significant barrier to funding the goals in Connecticut’s plan is the high cost of services at the Southbury Training School, an institution for approximately 630 persons with developmental disabilities. Southbury’s aging population is virtually static except for deaths, and the cost of care there is among the highest in the nation, more than $500 per person per day, as a result of a U. S. Department of Justice consent decree and a pending lawsuit, Messier v. Southbury Training School, filed by People First of Connecticut, The Arc, Connecticut, and the Western Connecticut Association for Human Rights and awaiting decision in federal court.454 In October 2001, The Arc filed a lawsuit on behalf of 1,700 persons with developmental disabilities waiting for services. The district court granted class certification in this case on February 12, 2003, only a day after the Commissioner of the Department of Mental Retardation announced that funding to reduce the waiting list would be eliminated in this year’s budget.455
A bill was passed in 2001 in the Connecticut legislature asking the governor to develop an inventory of persons who want to move from institutions. However, no funding was attached to it, so it is unlikely to enable institutional residents to move.456
(c) SYSTEMS CHANGE ACTIVITIES
Connecticut received a Nursing Facility Transition grant to transition 150 persons to the community. The Community Options Task Force was actively involved in developing the grant proposal. The Connecticut Association of Centers for Independent Living (CACIL) will be responsible for the overall management and administration of the project, which will be staffed and implemented by the state’s five CILs.457 A Real Choice Systems Change grant will develop model community programs for all disability populations.458
(a) THE PLANNING PROCESS
On May 18, 2000, then-Governor Carper issued an executive order instructing the Department of Health and Social Services (DHSS) to
submit a written plan to the Governor no later than November 1, 2000, including . . . recommendations on a 5-year timetable for providing increased community-based opportunities, where appropriate, for people with mental retardation currently residing at the Stockley Center, as well as people with mental retardation residing in the community who need alternative services.
submit a written plan to the governor no later than March 1, 2001, . . . including recommendations on a 5-year timetable for providing increased community-based opportunities, where appropriate, for people with mental illness currently residing at the Delaware Psychiatric Center, as well as people with mental illness residing in the community who need alternative services.
conduct a comprehensive review of all services and support systems available to all people with disabilities in Delaware and submit a comprehensive written plan (including, but not limited to, the recommendation in numbers 1 and 2) to the Governor no later than May 1, 2001, . . . including specific recommendations on how Delaware can improve its programs for people with disabilities by legislative or administrative action. DHSS shall ensure the involvement of consumers, advocates, providers and relevant agency representatives in this review.459
However, a change of administration intervened, and the state’s commitment to place institutional residents quickly evaporated. On March 19, 2002, the chair of the Developmental Disabilities Council wrote to the governor’s counsel on behalf of a coalition of disability organizations, including The Arc of Delaware, the Freedom Center for Independent Living, the Alliance for the Mentally Ill in Delaware, United Cerebral Palsy, and Easter Seals, charging that the state had failed to meet any of its goals for community placement:
The Division of Developmental Disabilities Services (DDDS) compliance plan for FY 03 contemplates providing community-based residential supports to 60-80 individuals drawn from both Stockley and its waiting list. … Unfortunately, the Division’s proposed budget precludes achievement of that target. In addition, the Medical Care Advisory Committee reported at its January 9, 2002, meeting that the Division will only be transitioning 6 or 7 individuals out of Stockley in FY 02, when the compliance plan provided for the transition of 24 individuals. … The Division of Substance Abuse and Mental Health (DSAMH) reported that 76 individuals have been transitioned from the Delaware Psychiatric Center (DPC) to community settings. However, according to Department of Health & Human Services Federal Office for Civil Rights status report issued in February, only 28 of the patients identified as appropriate for discharge last summer have been transferred. Moreover, 15 of these individuals were transferred to other institutions (Stockley Center). Most others were diverted to private hospitals. This is merely transferring individuals from institution to institution, which is not consistent with the spirit of the Olmstead decision. The Division of Services for Aging and Adults with Physical Disabilities (DSAAPD) reported that it has transitioned 16 individuals since July 2001. Sixteen individuals out of approximately 5000 people currently residing in institutional settings does not constitute “swift” implementation of the Olmsteaddecision, which is mandated by the President’s Executive Order. In addition, 5 of the individuals were transferred to Stockley Center and 4 were transferred to assisted living facilities.
[Moreover,] Delaware’s budget ignores the application of Olmstead to persons in the community at risk of institutionalization.460
Also in March 2002, representatives of The Arc of Delaware and other disability rights organizations met with the governor to inform her that if the state could not agree to a realistic plan to meet the community service needs of residents of the Stockley Center and persons on community waiting lists, the organizations would resort to litigation. The governor declined to negotiate with the advocates. On March 26, 2002, the state submitted to CMS an amendment to its existing home- and community-based waiver for persons with developmental disabilities that had the effect of removing virtually all the available slots in the waiver. The disability organizations filed a lawsuit, Arc of Delaware v. Meconi, in federal district court on April 8, 2002.461
However, Olmstead planning got a fresh start on July 1, 2002, when the Delaware House of Representatives passed a House Resolution “creating a commission to assess and make recommendations on community-based alternatives for persons with disabilities.” The resolution was initiated by the State Council for Persons with Disabilities and supported by the Developmental Disabilities Council and other disability advocacy groups462 and does not require Senate or gubernatorial approval. The commission created by the resolution was to be composed of a member of the House; a member of the Senate; the Controller General; the director of the Delaware State Housing Authority; the directors of University of Delaware’s Center for Disabilities Studies and Assistive Technology Initiative; and the directors of the Divisions of Social Services, Aging and Adults with Physical Disabilities, Developmental Disabilities, and Substance Abuse and Mental Health. The Commission was charged with presenting a plan by February 15, 2003, to reduce unnecessary institutional placements and actively coordinate efforts to obtain non-state funds.463
The Delaware state officials responsible for services to persons with disabilities refused to participate in the Commission’s planning process on the advice of their counsel in Arc of Delaware v. Meconi.464 Instead, the HHS published a short, hastily put-together plan in October 2002 while a motion for preliminary injunction was pending in Arc of Delaware v. Meconi. In the plan, the state proposed to place 24 residents of the Stockley Center who wish to move to the community, to provide community services for all the persons in the “urgent” category of its waiting list registry, and, over a two- to three-year period, “to continue to provide 24 placements from the Stockley Center until the only consumers residing [there] are those who require long term structured treatment.”465
The plan contains no placement goals or estimates of the number of persons with physical disabilities or elders who could leave nursing facilities for the community. Indeed, as the NCSL observed, it “does not contain any recommendations or clear strategies.”466 It promises to use its Nursing Facility Transition grant to evaluate Medicaid beneficiaries living in nursing facilities “to determine whether those residents wish to transition to the community.”467
The plan envisions no new activity aimed at enabling residents of psychiatric institutions to move to the community. Rather, it simply states that its current process for evaluating people after they are admitted to a psychiatric institution complies with Olmstead.468
In March 2003, the commission created by House resolution in July 2002 (now called the Commission on Community-Based Alternatives for Persons with Disabilities) issued its report to the Delaware General Assembly, “A Call to Action: Building a Community-Based Plan for Delaware.” The report is comprehensive and covers individual assessment, residential, health care, employment, transportation, and educational services.
The commission’s report is based solidly on the principle of “funding and services following the individual” and affirms that this change is needed to remove institutional bias.469 The report is styled as a preliminary plan that will be monitored and refined by a formal oversight group of stakeholders across disability groups.470
The initial step called for by the plan is “an exhaustive and on-going cross-disability universal assessment [to] allow the state to analyze and respond to the specific needs of the disability community.”471 The plan calls for the development of a single assessment tool (instead of the multiple tools currently in use) and evaluation every three months of all persons, regardless of severity of disability, institutionalized in nursing facilities, ICFs, and other institutions to determine their interest in community-based services. Every six months, those persons will be assessed to determine the needed supports for home- and community-based living using the Community Transition Form recommended by national disability services consultant Tony Records. Assessments will be carried out by an independent contractor who is free from financial or other conflicts, and based on the assessments, institutional residents will move to the community over a five-year period.472
Unique among the states is the commission’s goal of assessing persons with severe and persistent mental illness or other disabilities exiting the prison system. The commission also set a goal of annually assessing all persons living in group homes, natural family settings, or supportive living environments to determine their preferences and needs. Based on assessment data, the commission set an objective of developing a database system that makes possible the provision of support services in an equitable manner.473
The commission’s plan contains a comprehensive set of housing goals, including increasing homeownership and the supply of affordable and accessible rental housing. Among the commission’s objectives are that state and local authorities must obtain mainstream and fair share vouchers through HUD and ensure that vouchers are distributed in a timely fashion.474
The commission’s goals in health care, transportation, employment, and education are thoughtful and thorough. The commission concluded with regret that without the participation of state agencies, it was not feasible to include budget projections. Nevertheless, the commission was able to establish a number of meaningful goals for financing community services, including the following:
Allow all state and federal dollars to follow the individual from institution to community.
Aggressively identify any programs that are 100 percent state funded but could be Medicaid reimbursable.
Locate and secure a steady stream of revenue-based funding to support home- and community-based services, such as a Health Care Fund or Transportation Trust Fund.
Research “ability to pay policies” to secure additional revenues for community-based services.
Sell off the land and facilities at Stockley that are not needed and dedicate the proceeds to the improvement and expansion of community-based services.
Consolidate three state-operated institutions into one that will generate additional revenues from the used property and buildings that can be dedicated to community-based services.
Secure private funding for demonstration and pilot projects.
Support the Division of Developmental Disabilities Services in collaboration with the Center for Disability Studies to provide funding for a self-determination/family support program.
The commission’s report concludes with its highest priority recommendations: urging the DHSS to carry out a policy of “open government” at regular public meetings at which HHS would report baseline data and outcomes; establishing the independent needs assessment and database; and issuing a gubernatorial order for the continued monitoring of the state’s progress in implementing the recommendations in the report.475
The commission’s plan is inevitably flawed because the relevant state agencies refused to participate. Nevertheless, the plan, if implemented, would provide a solid foundation for meaningful Olmstead implementation. In its emphasis on assessment, transition, expanding access to housing, and creative funding strategies, the plan is exemplary.
(b) PROGRESS IN COMMUNITY INTEGRATION
As is demonstrated by the numbers Rita Landgraf cited in her letter quoted above, only 36 Delawareans with disabilities moved to the community from institutions, psychiatric hospitals, and nursing facilities in FY 2002. Conservatively, this is about half of 1 percent of Delaware’s institutional population. Compared with other states, the pace of movement of people with developmental disabilities in Delaware has been strikingly slow in the past several years: From 1997 to 2000, MR/DD institutional populations declined by a total of only 7 percent.476 With 3,950 nursing facility residents, Delaware is 21st in the nation in nursing facility population when expressed as a percentage of the population as a whole age 65 and older. Although nursing facility population declined by 2 percent from 1996 to 2001, during the same period, Medicaid expenditures on nursing facilities increased by more than 50 percent.477
(c) SYSTEMS CHANGE ACTIVITIES
Delaware has a Real Choice Systems Change grant designed to increase access to assistive technology. Grant activities include conducting a needs analysis, creating an awareness campaign, conducting training activities, and developing a Web site and a tracking system for assistive technology.478 The state also received two Nursing Facility Transition grants in the second round of system change grants.479
- DISTRICT OF COLUMBIA
(a) THE PLANNING PROCESS
The District of Columbia does not have an Olmstead plan; the nearest equivalent is the activity of the Real Choice Systems Change Advisory Committee of consumers, providers, and representatives of government agencies.480
(b) PROGRESS IN COMMUNITY INTEGRATION
The District of Columbia was an early leader in community integration for persons with developmental disabilities when it closed the Forest Haven institution in 1991. But although only 19 persons with developmental disabilities in the District lived in congregate facilities in 1998, that number had risen to 84 in 1999 and 2000. On the one hand, from 1996 to 2001, nursing facility population in the District grew by a staggering 18 percent, the highest rate of growth in the nation,481 with a corresponding increase in Medicaid expenditures.482 On the other hand, the census of state psychiatric institutions decreased by 23 percent from the beginning of 1998 to the end of 2001, from 868 to 636, 347 of whom had lived there for more than a year.483
(c) SYSTEMS CHANGE ACTIVITIES
The District recently received two Systems Change grants, one in the area of Community-Integrated Personal Assistance Services, the other a Real Choice grant.484
(a) THE PLANNING PROCESS
On December 8, 1999, Governor Barnes issued an executive order creating a Governor’s Blue-Ribbon Task Force on Community-Based Services composed of consumers, families, advocates, and professionals. The task force was charged with examining the current status of community-based services, the future need for such services, and the barriers that prevent access to existing services and recommending funding and service priorities.485 It held 10 meetings open to the public, conducted hearings attended by about 300 people throughout the state, and solicited input through questionnaires.
In January 2001, the task force issued a final report containing no targets for community placement but a number of recommendations for improving services, including centralizing information, data collection, and referral; implementing a single point of entry system; piloting consumer-directed care; creating presumptive eligibility for Medicaid services; screening current residents of nursing facilities for community living; increasing provider reimbursements and direct care staff salaries; implementing new Medicaid options, including the Ticket to Work, the personal care option, and the rehabilitation option; expanding waiver services to elders; and increasing funding for people on waiting lists.486
By this time, the governor had instructed the Department of Human Resources to apply for a grant from the Center for Health Care Strategies, Inc., (CHCS) to develop an Olmstead plan, with the Division of Mental Health, Mental Retardation and Substance Abuse (DMHMRSA) designated as the lead entity in the planning effort.487 An Olmstead Planning Committee was established consisting of advocates, consumers, families, service providers, and representatives of the Division of Medical Assistance, DMHMRSA, the Division of Aging Services, the Division of Children and Family Services, the Office of Regulatory Services, and the Governor’s Council on Developmental Disabilities. The committee met eight times, formed workgroups, conducted focus group meetings with stakeholders, and issued its “Final Report and Recommendations” in November 2001.488
The Planning Committee set four goals that are refreshingly simple and focused: transitioning people from institutions to the community; diverting people presenting in the community from institutions; building system and provider capacity; and gaining commitment from the state to provide the resources needed to implement the plan.489 The body of the plan keeps the focus solidly on community placement for institutional residents or those at risk of institutionalization. It contains a thorough description of the existing community system and acknowledges the gaps in information about current services, for example, the lack of reliable information about the number of people currently institutionalized or at risk of institutionalization and the absence of a waiting list for people who currently are institutionalized and who are appropriate for home- and community-based services.490
The Planning Committee recommended that the “universe” of people potentially appropriate for community services be identified and that persons living in institutions receive one-on-one education and outreach from people who have been institutionalized. The committee emphasized that the assessment process should not become a tool to prevent people from moving to the community and noted that when Georgia had closed institutions in the past, it had offered community services to each resident. For persons who need significant supports, the Committee recommended the assistance of a “Most Integrated Setting Team” of consultants and people with disabilities with significant experience assisting people to move from institutions.491
The Planning Committee emphasized that although historically Georgia “has allowed family members to decide where an individual with disabilities will live,” this choice belongs with the person with disabilities. The committee recommended that the state honor the choice of the person and the recommendations of the treatment team.492
The most distinctive aspect of the Georgia plan is its treatment of institutionalized persons who can handle and benefit from community services. Rather than postponing identification of such people, as so many states have, the Georgia committee attempted to identify the numbers of children and adults with disabilities in all congregate settings, including public institutions, private mental health hospitals, private nursing facilities, juvenile justice detention facilities, and jails. The group was unable to find data on residents of some of these settings, such as private mental health facilities and criminal justice facilities, but proposed to collect such data for the next planning phase. Using the data at hand, however, the group proposed to identify the support services needed by institutional residents who are “immediately ready for services in the community” and, for those whose support needs were more challenging, to develop an Individual Community Integration Plan for each person and identify the resources needed to serve those persons in the community. The planners developed preliminary cost estimates and a schedule for transitioning all children and adults with mental illness and developmental disabilities in public institutions and nursing facilities over a five-year period, from FY 2003 to 2007.493
The planners were not able to obtain good data on the numbers of children and adults with physical disabilities in nursing facilities, but remained committed to the goal of moving 20 percent of these persons per year over a five-year period. Similarly, the group could not determine how many elders living in nursing homes met the Olmstead criteria, but remained committed to their right to live in the most integrated setting and proposed that a Most Integrated Setting Team for Older Adults with Physical and Other Disabilities be assembled immediately and begin to putting together profiles showing the supports that older adults would need to be served in a community-based setting.494
The plan notes, “Currently consumers [with mental illness] residing in state-operated hospitals, private psychiatric hospitals and private nursing facilities who have requested a less restrictive placement are not routinely placed on the regional planning lists.”495 In this respect, of course, Georgia resembles most states. The planning group’s insistence that institutionalized persons be treated as “waiting for community services” and its decision to develop preliminary cost estimates and a schedule for transition deserve to be emulated by other states.
After the plan was submitted in January 2002, the governor charged the relevant state agencies with ongoing review and reporting on the state’s compliance with Olmstead and designated the Governor’s Office of Planning to oversee Olmsteadimplementation. Funding to move all persons under 21 from state retardation institutions was appropriated in the FY 2003 budget, and funding is included in the governor’s budget for 2004 to transition nearly 300 residents of nursing facilities, developmental disabilities institutions, and state mental health institutions to the community.496
(b) PROGRESS IN COMMUNITY INTEGRATION
In 2000, 3,299 Georgians with developmental disabilities were institutionalized: 1,489 in developmental disabilities institutions, 1,700 in nursing facilities, and 110 in other private institutions. This number has declined by an annual average of only 1.5 percent since 1990; almost all the decline occurred in the number of persons living in state developmental disabilities institutions.497 Georgia advocates report that in addition to the large and relatively static population of persons with developmental disabilities in nursing facilities, 1,300 persons with mental illness are institutionalized in these facilities.498 Georgia does not report length of stay in state psychiatric institutions, but the average daily census in these institutions was about 1,000 in 2001.499 With a total of 36,356 nursing facility residents in 2001, Georgia ranked 14th in the nation in nursing facility population when expressed as a percentage of the population as a whole age 65 and older. The state ranked 13th in nursing facility population increase.500 Medicaid expenditures for nursing facility services increased by about 17 percent between 1996 and 2001.501
In the 2001 session of the Georgia state legislature, Governor Barnes received a standing ovation when he promised that community services would be provided to an additional 1,232 persons with developmental disabilities, 2,000 elders with disabilities, 2,000 non-Medicaid eligible elders with disabilities, and 85 persons receiving developmental disabilities family support services.
However, the enthusiasm was short-lived. The governor requested that state agencies cut all budgets by 2.5 percent in FY 2002 and by 5 percent in FY 2003. The service slots that had not been awarded were frozen in mid-October. In an effort to negotiate provision of at least some of the services, Department of Human Resources Commissioner Jim Martin proposed to unfreeze 50 percent of the slots and permanently cut the other 50 percent. The governor responded by cutting all the slots permanently.502
On January 31, 2003, people with physical disabilities confined in nursing facilities or at risk of nursing facility placement filed Birdsong v. Perdue in federal court. The complaint alleges that in the three years since the Olmstead decision, the state “has made no significant effort to operate its community services in an even-handed manner so that persons who need [community services] have this option.”503
(b) SYSTEMS CHANGE ACTIVITIES
Georgia has received two Nursing Facility Transition grants, both of which are being carried out by Independent Living Centers as contractors. One will transition 24 persons from nursing facilities to the community; the other will develop a transition infrastructure within the Independent Living Network to introduce people with disabilities to peer supporters and role models. The grant, however, contains no concrete target for placing nursing home residents in the community.504
(a) THE PLANNING PROCESS
The Hawaii legislature passed a concurrent resolution in May 2000 establishing an Olmstead planning task force. The planning committee was chaired by the directors of the state Departments of Human Services and Health and the executive director of the Center for Independent Living; its top priority was information, including an awareness of available resources and a single point of entry. In December 2001, the Department of Health submitted to the legislature a five-year strategic plan to enhance services and support for people with developmental disabilities. The plan was intended as a response not only to Olmstead but also to Makin v. Cayetano, a lawsuit filed on behalf of persons with developmental disabilities on long waiting lists for services. In preliminary rulings, the district court in Makin had held that Medicaid beneficiaries waiting for services had enforceable rights under Title XIX of the Social Security Act and the Americans with Disabilities Act. The court’s decisions confirmed that the Olmstead decision applies not just to individuals currently institutionalized but also to individuals living in the community who are at risk of institutionalization because of a lack of community supports.505
In September 2002, Hawaii instituted The Olmstead Plan: State of Hawaii. The plan contains four goals:
Each individual will be informed and educated to make choices and decisions.
Each individual will be supported in finding an appropriate, affordable, and accessible home of his choice in a timely and efficient manner.
Each individual will have access to and will direct financial resources to meet his identified goals in a timely manner.
Each individual will be able to locate housing, acquire personal support personnel, use transportation, and engage in employment to sustain community-based living.
The State of Hawaii will coordinate an ongoing, effective quality assurance program to monitor and assess the state’s progress in meeting the goals and objectives of the plan.506
The Hawaii plan proposes to develop new standardized assessments to be administered to all persons in institutions to “determine whether they choose to remain in the care facility or move to a more independent community-based alternative.”507 Implicit in the assessment goals and objectives in the plan is the assumption that the only persons who will have the opportunity to move to the community are those who affirmatively express their “wish” to move, contrary toOlmstead.
(b) PROGRESS IN COMMUNITY INTEGRATION
Hawaii has closed its only state developmental disabilities institution, and only 80 residents of state psychiatric facilities have lived there for more than a year.508 From 1996 to 2001, Hawaii’s nursing facility population increased by 13.5 percent (to 3,694), the fifth highest growth rate in the nation.509 Surprisingly, however, Medicaid expenditures on nursing facility services increased by a modest 7 percent between 1996 and 2001.510
In 2000, the Hawaii legislature appropriated an additional $4.3 million for home- and community-based waiver services for persons with disabilities. However, this action was driven not by the Olmstead planning process but by the April 2000 settlement of Makin in which the state agreed to fund an additional 700 community placements and expand home- and community-based waiver services by 70 percent over a three-year period.511
(c) SYSTEMS CHANGE ACTIVITIES
Hawaii’s use of its Real Choice Systems Change grant is responsive to its five-year strategic plan of December 2001. The state is using the grant to develop, demonstrate, and institutionalize a cross-agency Web-based single entry point (SEP) to provide consumers with in-depth, up-to-date information on all their available service options by private and public agencies. The SEP will use a unified database showing all long-term care services offered by the state, counties, and private organizations, with open slots listed according to geographical location; it will also include a quality assurance system that will identify service gaps by tracking service requests and allow consumers to rate the services they receive. A consumer who is also co-principal investigator for the project and has at least 51 percent consumer membership will chair the project’s governing council and work groups.512
(a) THE PLANNING PROCESS
Idaho is developing a plan to enhance its community service system through a Community Integration Committee composed of representatives from the Department of Health and Welfare, the divisions of Family and Community Services, and Medicaid and with representation from other agencies and from consumers. The state has not set a date for plan completion. Issues being addressed by the planning group include housing, transportation, medications, and community support but not numerical targets.513
(b) PROGRESS IN COMMUNITY INTEGRATION
The number of persons with developmental disabilities in public and private institutions and nursing facilities in Idaho actually increased by 8 percent (to 464) from 1998 to 2000, as did the Medicaid funds spent on services in these settings.514 According to the Idaho Developmental Disabilities Council, home- and community-based waiver services are not available in all areas of the state, and more than 4,500 persons with developmental disabilities are waiting for Section 8 rental assistance or the Home of Your Own program.515
Compared with the number of institutionalized persons with developmental disabilities, the population of Idaho’s state psychiatric institutions is relatively low. At the end of 2001, only 29 residents of such facilities had lived there for more than a year.516
Idaho’s nursing facility population, in the midrange of the states when expressed as a percentage of the population as a whole age 65 and older, declined by 3.6 percent from 1996 to 2001, to 4,619.517 Medicaid expenditures on nursing facility services increased by 32 percent during this period.518
(c) SYSTEMS CHANGE ACTIVITIES
Idaho is using its Real Choice Systems Change grant to conduct a needs and resources assessment, analyze current service use, and “test and refine a community based plan.”519 In 2001, the legislature and the Department of Health and Welfare initiated a new program to provide children’s mental health services; however, this initiative was not a response toOlmstead planning but was driven by an effort to resolve the Jeff D. lawsuit filed in 1980.520
(a) THE PLANNING PROCESS
The first edition of the state’s Olmstead plan, published on June 1, 2001, articulated six policy directives: (1) consumer choice; (2) informed choice; (3) support for informal networks of family and communities; (4) enhanced quality assurance and advocacy; (5) increased system capacity; and (6) coordinated workforce development. The draft called for reducing the population of the state psychiatric hospital by 100 and developing community services for all persons in state developmental disabilities institutions who have been “targeted for placement” by 2003, a number estimated to be 350. The plan did not examine existing assessment procedures.521
The release of the first draft of the plan was followed by a series of public hearings around the state. A theme of many commentators was that the plan was not a long-term plan but was focused on short-term goals. The state administrator who presided at the hearings acknowledged the validity of the criticism.
The most frequently recurring themes of the hearings were the long waiting lists for services, especially Indiana’s Community and Home Options to Institutional Care for the Elderly and Disabled (CHOICE) and home- and community-based waiver services. A witness from an Area Agency on Aging described how the long wait for in-home services leads to unnecessary institutionalization:
What happens is we screen all the people who go into nursing homes in this four-county area: Clark, Floyd, Harrison, and Scott. … Almost everyone that we screen is appropriate for nursing home placement because we cannot offer them any community services whatsoever.
In the beginning, in 1992 when the Waiver Program started and the CHOICE program started we were able to give people alternatives and choices. That stopped about 1993 because the waivers started filling up, there was no expansion of the waiver, home care dollars got certainly saturated and very shortly we began a waiting list for home care dollars, as well as for the Medicaid Waivers.
So now when someone applies for nursing home placement we cannot offer home and community based services to them, so they automatically by default go into a nursing home.
You call in today, you wait two and a half years for home care, you could wait for four to five years for a Medicaid Waiver, but if you make application for a nursing home today you probably will be approved if you meet the eligibility criteria.
… [W]e need to look at what are we doing on the aging side of the house. We are placing people in institutions instead of bringing them out. At some point we need to turn this around and the aging people we need now to be giving them a choice. We don’t need to be forcing them in because there’s no other choices for those individuals.522
The comments on the plan submitted by the Indiana State Commission on Aging also emphasized the lack of meaningful support for Indiana’s existing home- and community-based services for elders in the plan:
We could not find a vision statement for the future. It is limited in scope. We cannot see that as a comprehensive plan. Most action steps are short term. It does not include the number of persons in need of service, the projected number of individuals to be served, or the funding needed for such services. Timelines are short term with most being within the next two years, and most action steps were already in progress before the document was written. The document appears to be more of a status report than a comprehensive plan. …
I am a little concerned that we keep building programs on top of programs on top of programs when you have already got a program established, the CHOICE program that is almost identical to the same thing, and you can’t get money for it.
The waiting list is almost as long as from here to Chicago and then they are going to build another program. I have seen this kind of thing happen before. You create a new agency, you create now jobs, then there is no money for them. You get people’s hopes up and there is nothing there.523
On July 30, 2002, Governor Frank O’Bannon announced the formation of the Governor’s Commission on Home and Community-Based Care, with the purpose of developing short- and long-term strategies to create or expand community living options for people who are institutionalized or at risk of institutionalization. The Commission’s members included consumers, advocates, clergy, legislators, government representatives, businesspeople, providers, educators, and representatives of the medical and legal professions.524 The Commission began its work amid the skepticism arising in part from first draft of the plan of many stakeholders about whether the commission’s work would, in fact, “provoke lasting change.”
But by fall 2002, a remarkable change had occurred in the Olmstead planning process in Indiana, a change that deserves to be emulated by many other states. The commission decided to accelerate the planning process and refocus it on the most urgent systemic barriers because “the original assignments and time-lines established for both the commission and its task forces were not responsive enough to the urgency of many of the system problems and the opportunities presented by the upcoming legislative session.”525 Accordingly, the commission assigned each of its recommendations to one of three categories: (1) those that should be implemented quickly and with little or no fiscal impact or regulatory requirements; (2) those that should be implemented quickly but have a fiscal impact or require regulatory changes; and (3) those that are more complex, costly, or difficult and will require more time to develop and implement.526 The commission acknowledged the significant institutional bias in Indiana’s service system and the magnitude of the task at hand.527 The Commission developed 16 recommendations that are directly responsive to systemic barriers, could be implemented simply and at little or no additional cost, and “are absolutely critical to developing the longer-term recommendations” of the planning group.528 These recommendations address systemic barriers that are familiar from many states.
Two of the recommendations concern program eligibility: (1) Make financial eligibility requirements for the Aged and Disabled waiver and other home- and community-based waivers the same as for Medicaid-funded nursing facility placements by implementing spousal impoverishment protections; (2) Raise the monthly income eligibility standard for the Aged and Disabled waiver and other home- and community-based waivers to 300 percent of the Supplemental Security Income standard. Although the second recommendation would require a financial impact analysis, the commission considered that the cost of implementation would be offset by cost savings from diverting more people from nursing facilities and the fiscal impact analysis should consider these potential savings.529
The next six recommendations concerned streamlining funding and drawing down more federal matching funds: (1) Request approval from CMS to allow Medicare beneficiaries to attend day services that currently do not meet formal Medicare requirements; (2) reappoint the Indiana Low Income Housing Trust Fund Board-originally established in 1988 to develop a permanent, nonrenewable revenue source to finance affordable low-income housing-and develop directives, action steps, expected outcomes, timelines, and staff support for the board to enable it to fulfill its original charge; (3) submit a home- and community-based services waiver for children with serious emotional disturbances to provide wraparound support, respite, and psychosocial and behavioral training and therapeutic foster care; (4) expand access to Medicaid Rehabilitation Option funds to cover children’s mental health services; (5) use a waiver obtained in 1996 but inconsistently implemented to allow the use of Adoption Assistance Act IV-E funds to provide services for children age 14 to 21 on waiting lists for independent living services; and (6) simplify and make consistent the payment process for Medicaid transportation providers. Apart from the proposal to revive the Low Income Housing Trust Fund, the fiscal impact for most of these proposals were primarily in the area of administrative costs. The commission expected that funds used to pay for existing services could be used as the state match to draw down additional federal funds and that certain administrative costs would also be eligible for a federal match.530
The commission developed four recommendations designed to create incentives for providers to increase capacity: (1) Analyze the reasons for the significant underuse of the Assisted Living waiver; (2) develop congregate care options within the Aged and Disabled waiver without limiting the choice of services available to persons who do not prefer congregate settings; (3) remove barriers to timely Medicaid reimbursement for small providers who find the system cumbersome and difficult to understand; and (4) allow local taxing authority by Regional Transit Authorities. All but the last, which could lead to increased expenditures at the local level and which the commission recognized could be a hard sell to the state legislature, would have minimal fiscal impact apart from administrative costs.531
Finally, the commission recommended four measures to increase consumer education and consumer choice: (1) Ensure that local employment resource centers provide up-to-date, consumer-accessible information for persons seeking employment; (2) provide the administrative resources needed to coordinate and administer state and local applications for all available federal and state funds to support housing initiatives for persons with disabilities; (3) amend home- and community-based waivers to include consumer-directed services options (and develop a fiscal intermediary structure to make this possible); and (4) require an employment component as part of Individualized Education Plans (in the special education system) and treatment plans (in the child welfare system) for all children receiving state-funded or state-regulated services.
The costs associated with these initiatives are primarily administrative; the last recommendation is noteworthy because it requires the participation of state education and child welfare agencies that all too frequently are not at the table as part ofOlmstead planning.532
The commission’s 16 short-term recommendations address systemic barriers that in many state Olmstead planning efforts would simply be identified for further study and analysis. The commission’s effort to prioritize activities that could begin immediately and at little short-term cost should serve as a model for other states.
(b) PROGRESS IN COMMUNITY INTEGRATION
Indiana is a heavily institutional state that currently spends 85 percent of its Medicaid long-term care dollars on institutional services and has a very high nursing facility bed ratio per 1,000 persons age 65 and older. Waiting lists for home- and community-based services are high: They include 2,300 people waiting for services under the Aged and Disabled waiver and 7,000 waiting for the CHOICE program.533
The Olmstead plan’s projection that 350 institutionalized persons with developmental disabilities can live in the community is surprisingly low, considering that in 2000, 782 Indianans with developmental disabilities were segregated in state institutions, another 835 in private ICFs/MR, and an astonishing 1,933 in nursing facilities.534 The plan calls for reducing the census of the state psychiatric hospitals by only 100 of the 800 persons who, as in 2001, had been housed in those settings for more than a year.535
Indiana’s nursing facility population, 41,946 in 2001, is one of the highest in the nation; the state ranks seventh in nursing facility residents when expressed as a percentage of the population as a whole age 65 and older. However, the state reduced nursing facility population and number of nursing facility beds by about 6.5 percent from 1996 to 2001, a decrease that is well above average for the nation.536
The state’s Olmstead plan states that budget requests have been approved for 2002 and 2003 that will fund 1,635 additional places in the Aged and Disabled waiver and 812 additional places in the Developmental Disabilities waiver by 2003.
(c) SYSTEMS CHANGE ACTIVITIES
Indiana has a Nursing Facility Transition grant to reintegrate nursing facility residents into the community and divert persons at risk of entering nursing facilities by changing pre-admission screening procedures and establishing partnerships with hospital discharge planners. However, the grant contains no numerical targets.537
Senate Bill 215, enacted in 2001, requires the state to create and maintain a registry of personal services workers who provide attendant care services, to be used by beneficiaries of the CHOICE and the Medicaid Waiver program who can hire their own assistants. The list will also be available to individuals receiving personal assistance through the VR program or through private pay.
The state is developing waivers for targeted case management and support services, leveraging federal funds by shifting state funds used to support adult day services to the Medicaid waiver program. The most recent budget contains funds for raising salaries of direct support professionals.
(a) THE PLANNING PROCESS
The state’s Olmstead plan was published in July 2001. More than 50 percent of the membership of the Olmstead Real Choices Consumer Taskforce, as the Olmstead planning committee has been known since 2002 and which is now reported to be working on implementation of the plan, is composed of persons with disabilities who use services or family members of persons with disabilities.538
The plan projects that a comprehensive list of the Iowans living in residential settings will be compiled as an implementation activity, including a list of the persons in facilities for which data is less readily available, such as residential treatment facilities, corrections facilities, and any other congregate facilities that may be identified.539
The Iowa Olmstead plan commits the state to a relatively small number of significant initiatives that have the potential to significantly restructure the state’s service delivery systems:
“Money Follows the Person.” The plan commits the state to “identify and pursue all needed legislative or regulatory actions so that, as individuals access community living with community-based care services, funds that would be available to support them in facilities will be made available to cover the cost of community-based services.”
“No Discrimination Because of Severity of Disability.” The plan commits the state to “identify and pursue all needed legislative and regulatory actions necessary [to] establish reimbursement rates that are sufficient to support the needs of individuals with severe disabilities.”
“Home Health Services Designed to Support Independence.” The plan commits the state to “redesign and increase home health services with the intent of supporting people in their own homes and preventing admission to nursing homes and institutions. Iowa will develop a comprehensive (less medical) approach for home health benefits, to be used in combination with attendant services (e.g., via the Personal Care Option or HCBS Waivers).”
“Support the Use of Paraprofessionals to Provide Comprehensive Personal Attendant Services.” The plan commits the state to “review the Physicians Practice Act and the Nurse Practice Act to ensure that individuals with disabilities who need services generally performed by a licensed professional as a part of their routine daily personal care can use personal attendants or other para-professionals.”540
(b) PROGRESS IN COMMUNITY INTEGRATION
Concurrent with the development of the Olmstead plan, the Iowa Department of Human Services’ Medicaid Infrastructure Grant Work Group met to design a consumer-directed personal assistance benefit to be added to the state’s Medicaid Plan under the personal care option. The estimated number of beneficiaries of the program is 992, and it would be implemented beginning in 2003. Although this program is well designed (consumers could use the benefit at home or work, receive additional hours over the minimum through prior authorization, and hire friends and neighbors as assistants), it is discouraging that the work group assumed that this benefit would not be used by nursing facility and other institutional residents to move to the community because of the many other barriers that prevented community placement for these persons:
In assessing the various barriers to use of the new state plan community-based PAS [personal assistance services] benefit, we determined that there were a considerable number of factors that would make it difficult for persons in a nursing facility or residential care facility to access the benefit. These include, but are not limited to, a lack of housing, a lack of other supports necessary for one to reside in the community, the potential loss of Medicaid eligibility upon one’s return to the community due to different asset and income rules, a need for 24-hour skilled nursing care that could not be met cost-effectively in the community, and a lack of desire on the parts of some residents or their families, for them to return to the community. Once all factors were considered, our estimate of the number of people likely to return to the community and access the PAS benefit was extremely small. Given the small percent estimated, it was determined that, methodologically, in developing the cost projections, the nursing and residential care facility populations could be removed from the denominator of persons likely to use PAS, without there being any significant impact on the outcome. Therefore, this population was removed from the equation.
The work group acknowledged that many nonelderly persons living in nursing facilities and other institutions would choose to return home to the community if they had more information about what was available and some assistance with their transition and that this would be consistent with the state’s response to the Olmstead decision. Because Iowa’s nursing facility population of 28,825 is the highest in the nation when expressed as a percentage of the population as a whole age 65 and older,541 this should be an important concern. Nevertheless, the work group did not alter its projections and cost estimates to accommodate persons who would like to leave institutions.542 Of course, because the personal care benefit is a state plan service, Iowa will not be able to limit the service to persons who are currently not institutionalized. However, given the state planners’ assumption, it is plain that assertive advocacy will be needed to make institutional residents aware of the option.
(c) SYSTEMS CHANGE ACTIVITIES
Although the Iowa Olmstead plan does not contain an evaluation of the adequacy of current assessment processes, the state’s Olmstead planning group participated actively in developing the state’s Real Choice System Change grant proposal, the focus of which is “establishing a flexible, consumer-centered, individual assessment process emphasizing consumer preferences” and “developing a coordinated system of transition and community support services.”543
(a) THE PLANNING PROCESS
Kansas does not have an Olmstead planning process. However, in 2000, the Department of Aging and the Department of Social and Rehabilitation Services formed two subcommittees, one to draft a study of 10 years of implementation of the ADA in Kansas (since 1990, when the statute was enacted), and the other to develop an assessment process to identify people who want to leave institutions.544 The latter project, “Operation Escape” was responsive to an initiative proposed by members of Kansas ADAPT, who met with the secretaries of the Kansas Department of Aging (KDOA) and Social and Rehabilitation Services in September 2000 to propose a process for identifying individuals living in nursing homes who would like to live in the community. KDOA staff responded that they were receptive and suggested a cooperative approach to the project. ADAPT would design a program (with state agency approval) of information and referral. Members of ADAPT would go into facilities to provide information about services, assistance with moving out, advocacy, and follow-up. “Operation Escape” is targeted to nursing facility residents and does not address residents of other facilities.545 Thus far, the state’s planning efforts have not determined how many people are unnecessarily institutionalized, nor have they set measurable targets for community placement.
(b) PROGRESS IN COMMUNITY INTEGRATION
In the past few years, deinstitutionalization in Kansas has slowed or halted, and the state’s fiscal investment in nursing facilities, psychiatric hospitals, and other congregate settings has increased significantly. Although throughout most of the 1990s, Kansas significantly decreased its reliance on institutions for persons with developmental disabilities, deinstitutionalization had virtually ceased by 1999, and in 2000, people with developmental disabilities were admitted to nursing facilities in Kansas for the first time in a decade.546
Kansas’ nursing facility population, 21,498 in 2001, makes it one of the highest in the nation when expressed as a percentage of the population as a whole age 65 and older, although it was even higher five years ago: Kansas reduced nursing facility population by 13 percent from 1996 to 2001, one of the highest rates of decline in the nation.547 In the past five years, Medicaid spending on nursing facilities in Kansas has doubled, and the amount increased by more than 35 percent in each of the past two years. From 2000 to 2001, Medicaid spending on inpatient mental health services increased by 122 percent. Spending on home- and community-based waivers, personal care, and home health also increased, but much more modestly, between 10 and 16 percent.548 Waiting lists for home- and community-based waiver services were high even before the recently threatened budget cuts. A recent review of Kansas’ home- and community-based waivers found that the low wages and lack of overtime pay for direct support professionals will substantially affect the ability of the state to increase the number of persons served in the community through waiver services, that many consumers had little or no choice of providers, that an accurate count of the persons waiting for services and with unmet needs had yet to be made, that quality assurance was virtually nonexistent for persons receiving in-home family support, and creating opportunities for people to live in homes that do not resemble institutional settings is extremely difficult in some regions.549
In mid-May 2002, the Department of Social and Rehabilitation Services predicted that because of revenue shortfall and the state law balanced budget requirement, waiting lists for persons with developmental and physical disabilities would triple.550
(c) SYSTEMS CHANGE ACTIVITIES
Kansas has received two Systems Change grants for a total of $2 million. One of the grants, for personal assistance services, is to be administered by the University of Kansas Center for Research; the Department of Social and Rehabilitation Services will administer the other.551
(a) THE PLANNING PROCESS
Beginning in November 2000, a group called the Kentucky Olmstead Committee began conducting public forums to identify issues to be addressed in the Olmstead planning process; the group then formed issue teams to develop the plan. Kentucky was one of eight states that received a grant of $100,000 from the Robert Wood Johnson Foundation for this initial activity. In April 2002, the General Assembly passed legislation establishing an oversight committee to oversee Kentucky’s compliance with Olmstead.552
The Olmstead planners’ initial policy recommendations included a recommendation that by July 1, 2002, persons living in long-term care facilities will be assessed to determine if they are receiving services in the most integrated environment appropriate. A community-based team composed of professionals and persons with disabilities who are knowledgeable about community services would conduct the assessments using a common assessment instrument.553
The policy recommendations also included a recommendation that 500 persons be added to the Supports for Community Living Program, using funds budgeted for nursing facility placements and transferred to the community program. The planning group recommended that all persons who currently live in Personal Care Homes (approximately 5,600 in all) will be transitioned to their own homes, a family care home, or a group home. The Cabinet will reallocate the funds currently used to support these persons in Personal Care homes to programs to support them in their own homes.554
Kentucky’s final Olmstead plan was published on December 11, 2002.555 It contains goals designed to ensure that people with disabilities are evaluated and determined eligible to receive services in the most integrated setting. The plan states, “Individuals with disabilities currently living in institutional settings who desire community services and for who[m] the treatment team has concluded that community placement is appropriate, will be identified and plans will be developed as soon as is practicable and funds are available.”556 The qualification that the person must “desire” community services and that transition plans will not be developed until “funds are available” are inconsistent with Olmstead. Further, the manner in which the following goal is framed-“The process used to determine an individual’s need for services and supports will be based on objective criteria focusing on the functional ability of the individual and the recommendations of the treatment team”557-suggests that recommendations for community placement may depend on the person’s functional ability and that the process will favor persons who are higher-functioning.
(b) PROGRESS IN COMMUNITY INTEGRATION
Although the planning group’s recommendations, if implemented, would benefit significant numbers of persons with disabilities, they would not ensure that persons with developmental disabilities, a group that in Kentucky are still institutionalized in relatively large numbers, will be assured of movement to the community. This is somewhat ironic because people with developmental disabilities have, across the nation, tended to benefit more from deinstitutionalization initiatives than people with other disabilities. But in Kentucky, in 2000, more than 1,700 persons with developmental disabilities lived in public and private institutions and nursing facilities; the number of persons with developmental disabilities in state institutions (735) and nursing facilities (744) has remained relatively constant since 1996.558 In contrast, Kentucky’s state psychiatric hospital population in 2000 included only 83 persons who had been there more than a year.559 Kentucky’s nursing home population has grown by about 4,000 in the past five years, an increase of 16 percent.
Kentucky’s nursing home population was 22,776 in 2001, 16th in the nation when expressed as a percentage of the population as a whole age 65 and older. The number of nursing facility residents grew by 4.9 percent, the 10th highest rate in the nation.560 Although nursing facilities still dominate the long-term care landscape, Kentucky has expanded its waiver services significantly in the past few years and, in 2000, served 18,000 persons through the home health benefit and more than 15,000 through home- and community-based services waivers. Except for spending on public and private ICFs/MR, Medicaid spending on institutional services in Kentucky has shown only modest increases in comparison to spending on home- and community-based waivers home health services. Kentucky has not exercised the option to include personal care services in its state plan, but relies heavily on the home health care benefit to support community services for elders and younger adults with disabilities.561
(c) SYSTEMS CHANGE ACTIVITIES
The Policy Recommendations for the state Olmstead plan include provisions that would empower Medicaid beneficiaries to manage their service dollars, employ and dismiss service providers, and pay family members for delivery of services. The recommendations also place high priority on developing supported employment and would require that housing strategies pursued in the Olmstead plan be aligned with other planning efforts to maximize access by people with disabilities to affordable, accessible housing.562
The state is using its Systems Change Grant, in part, to develop pilot nursing facility transition projects in two regions of the state (urban and rural) to assess the availability and accessibility of housing and service options for transitioning out of institutions into the community.563
(a) THE PLANNING PROCESS
The impetus for Olmstead planning in Louisiana came from a cross-disability consumer advocacy coalition, Louisiana People’s Olmstead Plan (LaPOP), created in late 2000. Leaders of the coalition included the AARP and Louisiana Citizens for Action Now (LaCAN), an advocacy organization of parents of persons with developmental disabilities. More than 40 disability organizations became members of LaPOP, including independent living centers, multiple groups representing the elderly and people of all ages with disabilities, mental health advocates, providers, and state and local agencies. Ralph D. Rouse, Jr., of the Office of Civil Rights for HHS Region VI, encouraged the formation of LaPOP. The organization’s mission is “to prepare a state long-term care plan the provides freedom of choice and quality of life to individuals with disabilities.”564 State officials originally had chosen not to develop an Olmstead plan, but LaPOP’s advocacy and a meeting with representatives of the Office of Civil Rights, attended by about 25 representatives of the disability community, caused them to reconsider.565 LaPOP is now the Louisiana Disability and Aging Partnership (LaDAP).566
LaPOP persuaded the Louisiana Department of Health and Hospitals (DHH) to jointly seek legislation authorizing the formation of an Olmstead planning group. Accordingly, legislation was passed in 2001 establishing the Disability Services and Supports System Planning Group and specifying its membership and that of a consumer task force for the planning group to which proposals of the planning group would be submitted for review. The legislation specified that the mission of the planning group was “to enhance Louisiana’s long-term support system [to] recognize the importance of self-determination to persons with disabilities, of the desire of persons with disabilities, with paid or unpaid support, to develop an individual plan, to have access to paid or unpaid support to attain personal goals, and to contribute to their communities when possible.”567
Although the role of the Planning Group is to advise the DHH, it meets under the auspices of the Governor’s Office of Disability Affairs. In the first year of the planning group’s existence, LaDAP focused on legislative advocacy for increased funding for community services and for a Real Choice Systems Change grant.568 The state did agree to apply for a Systems Change grant, but although advocates wanted the Governor’s Office to be the lead agency in applying for the grant, according to a former state official, the nursing facility lobby succeeded in moving the lead agency function to the DHH. The state received the grant, but the trust of the advocacy community was badly damaged by the experience.
No formal plan has been produced, although the planning group was scheduled to meet through at least December 2002.569 According to local stakeholders, the DHH is essentially the only state agency at the table-the state housing and transportation agencies are not participants in the process, and no Olmstead-related legislative proposals have made it into the DHH budget. Advocates are frustrated by state officials’ lack of vision and concerned about whether the planning process will make any difference.
(b) PROGRESS IN COMMUNITY INTEGRATION
Although the planning group has not established the “reasonable pace” by which institutionalized persons will move to the community, DHH set a goal for FY 2001 of allowing up to 125 persons to move from developmental centers to the community.570 This rate of deinstitutionalization is disturbing when compared with the 3,861 persons with developmental disabilities in large congregate facilities in Louisiana in 2000, including 1,717 in state institutions and 1,109 in nursing facilities.571 At the end of 2001, Louisiana also housed 341 persons in state psychiatric facilities who had been there for more than a year.572
However, Louisiana’s investment in nursing facility services is the state’s most stunning exemplar of reliance on nursing facility services. In 2001, 30,127 Louisianians were confined to nursing facilities compared with 679 persons served in the elderly waiver, 500 in the adult day waiver, and 121 in the Personal Care waiver. The state ranked fifth in the nation in nursing facility population when expressed as a percentage of the population as a whole age 65 and older. Although nursing facility population declined by 5.9 percent from 1996 to 2001,573 the supply of beds remained virtually static; thus, an oversupply of nursing facility beds exists in spite of the fact that people must wait years for community-based services. Louisiana ranks 49th out of the 50 states.574 The state spends more than a billion Medicaid dollars on nursing facility services for a per capita outlay of $260. Moreover, nursing facility Medicaid expenditures grew by 125 percent in 2001, the same year that the state committed to Olmstead planning.575
According to a report in 2000, about 10,000 Louisianians are on waiting lists for home- and community-based waiver services and are sometimes forced to choose between accepting inappropriate services or being bumped to the bottom of the list. Systemic problems in the community system include low wages and lack of overtime and benefits for direct support professionals, a system of “fining” case managers for minor infractions, and lack of cooperation and coordination between the state Medicaid agency (DHH) and the state MR/DD agency.576 Louisiana did not receive a Systems Change grant.
(c) SYSTEMS CHANGE ACTIVITIES
In July 2001, after months of intense advocacy for DHH to submit an application for a Real Choice Systems Change grant, the advocates withdrew their letters of support for the grant after DHH allowed the director of the Louisiana Nursing Home Association to participate in editing the final draft of the proposal, and counsel for DHH advised that the Consumer Task Force could not play a decisive role in planning or implementing the activities proposed in the application.577
A class action lawsuit filed in federal court in April 2000, Barthelemy v. Department of Health and Hospitals, has had far greater impact on the progress of community integration and systems change in Louisiana that formal Olmstead planning. Barthelemy was filed by the Advocacy Center, Louisiana’s Protection and Advocacy system, on behalf of persons in nursing facilities or at imminent risk of placement in those facilities. In October 2001, the court approved a settlement agreement requiring the defendants to reduce waiting lists for waiver services to 90 days over the next four years; increase the number of waiver slots by 1,850, amend the state plan to add the personal care option for persons in nursing facilities or at imminent risk of nursing facility placement for up to 56 hours a week, increase the wages of personal care attendants and case management fees, develop assessment-driven plans of care, and implement a variety of methods for ensuring that nursing facility and residents and persons referred for long-term care services are adequately advised about the availability of community services.578 In summer 2002, the parties negotiated a modification of the settlement agreement adding 500 waiver slots to the 1,850 already agreed to, obligating the defendants to use their best efforts to fill 100 percent of the slots by the end of the six-month period in which they become available, and requiring consumer-directed implementation of the new personal care option. Some of the timelines in the original agreement were modified, but most provisions of the agreement will become operational in 2003.579 Barthelemy has enormous potential to expand the availability of community services as an alternative to nursing facility services in Louisiana.
(a) THE PLANNING PROCESS
Maine’s Olmstead planning process has been unusually broad and inclusive. In response to the first CMS letter, Commissioner Concannon of the Maine Department of Human Services, with the approval of the governor, invited several other state commissioners to develop a common response to the Olmstead decision. The other agencies at the table were the Departments of Behavioral and Developmental Services, Education, Labor, and Corrections. With consumer representatives, the agencies formed a joint Plan Development Work Group for Community-Based Living. The work group was charged with finding answers to the following questions:
- How do we eliminate altogether the unnecessary institutionalization of persons with disabilities (in both state and private institutions)?
- How do we ensure sustainable community living for persons receiving publicly funded services in the community?
- How do we identify and address the needs of persons at risk of unnecessary institutionalization who are not currently receiving services?
The work group was asked “to go beyond developing a ‘comprehensive, working plan’ in response to the Olmsteaddecision [and] to help develop a single coherent vision of what it means to provide community-based services across all state agencies … and through economic downturns … make sure that community- and home-based services provide needed support for people with disabilities.”580
With stakeholder representatives from the State Rehabilitation Council for the Blind and Visually Impaired; the Developmental Disability Council; the Disability Rights Center; the Maine Administrators of Services for Children with Disabilities; the Maine Advisory Council for the Education of Children with Disabilities; the Maine Association for Mental Health Services; the Maine Association of Substance Abuse Programs; the Maine Long Term Care Steering Committee; the Maine Parent Federation; the National Alliance for the Mentally Ill, Maine Chapter; Speaking Up for Us; the State Rehabilitation Council; and the Statewide Independent Living Council, the work group began convening in May 2000 and has held monthly meetings since then. Staff support and facilitation has been provided by the Muskie School of Public Service at the University of Southern Maine with funding support from the Department of Human Services. Funding was also provided for work group members’ travel expenses to the meetings.581
The work group minutes show that the work facilitators made genuine efforts to include persons with disabilities in the work group sessions. Relatively early in the process, a Universal Access Group was formed to recommend specific accommodations to maximize opportunities for participation for persons with different disabilities.582
The planning process began by developing a statement of the service system’s needs, which the participants identified as the following:
- Improve the quality and capacity of the provider workforce.
- Ensure the availability of transportation.
- Ensure that people have the housing they need.
- Ensure that people have access to all the services and support they need to live in the most integrated setting.
- Eliminate barriers to employment.
- Ensure that the state coordinates and ensures the quality of its services.
- Educate providers, consumers, and the public about the rights and needs of people with disabilities.
- Develop alternatives to the state guardianship program.583
The work group helped develop the proposal for Maine’s Real Choice Systems Change grant, which was funded by HHS at a level of $2.3 million. Reflecting, perhaps, the diverse interests of the work group and the state agency participants, the activities in the grant read like a laundry list rather than a focused systems change effort and include such disparate activities as analyzing Maine’s personal assistance policies, developing an independent service coordination organization, conducting a flexible funding demonstration, and evaluating a wraparound services project in the Portland public schools.584
As facilitated by Muskie School staff, the planning process was careful, systematic, and respectful of differences in the group; it was also extremely slow. The plan was originally supposed to be completed by November 2001, but it was not until September 2002 that the group began to generate draft reports and recommendations.
Midway through the process, in October 2001, the group held a discussion that is quite revealing of the different interests of consumer advocates and state officials in the planning process in the role of the Work Group announced at the beginning of the planning process as “creating a coherent vision of home and community based services.” The facilitator’s “process check” had revealed that many participants felt confused about the relationship of the planning process to theOlmstead decision, and members of the group asked whether they were to create a plan or a vision. To a person, the consumers and advocates who spoke to this issue emphasized that their goal was to create a plan, whereas the state officials argued that they needed a vision. One advocate suggested that the state was avoiding the “meat and potatoes” of making sure people are out of segregated settings and focusing only on the “dessert and champagne” of improving home and community services. A consumer asked succinctly, “If the work group is developing a vision, then who is developing a plan? And if we are developing a vision, will it reduce any waiting lists?”585
The discussion continued at the following meeting when the work group reviewed a flowchart of its activities. An advocate said that she did not see anything in the flowchart “that said the plan is going to collect information on the people living in restricted settings that want to get out.” She asked whether the plan “will count the number of waiting lists, the number of people on each list, what services they need in order to move to a less restrictive setting, and a schedule for when those needs will be met.” A state official responded that the advocate “was looking for something very different from what the work group was currently working on.” Another advocate echoed that the plan must “set measurable goals and principles that can be used to measure success [such as] whether the children placed out-of-state for care were returned to Maine to receive care.”586
The discussion was tabled, and the issue was never resolved. The minutes reflect that the focus of the work group shifted to committee work. Finally, the group began to release its draft reports and recommendations. As of the end of September 2002, the work group’s recommendations included the following (note that these are not final recommendations):
- Identify department representatives who would be responsible to ensure that location of services and transportation are taken into account in housing planning and developing housing.
- Track whether people served are receiving services in the most integrated setting appropriate to their needs and preferences.
- Ensure that all people who are not served in the most integrated setting are provided that option within a reasonable period of time.
- Expand eligibility for the Bridging Rental Assistance Program (a program for consumers with mental illness on waiting lists for Section 8) to all who need it.
- Support home ownership loans for assistance with down payments and closing costs.
Expand legal resources to help people with disabilities protect their housing rights.587
Coordination of Services
- Create a common set of measures for assessing the effectiveness of the state’s services, including measures of whether services are provided in the most integrated setting and whether waiting lists move at a reasonable pace.
- Create a statewide, integrated information and referral system for all disability-related services.
- Create integrated access to services (“No Wrong Door”) so that consumers can be linked with all needed services so matter where they enter the service system.
- Expand eligibility for and access to service coordination.
Ensure that independent coordinators provide service coordination wherever possible.588
- Assure individuals and families the power to control and direct their services and select their own employees.
- Develop a comprehensive resource plan for individuals and families receiving services that would be driven by the person’s needs and include private and community resources as well as those provided by the state.
- Develop individual budgets for each consumer that would include the entire range of long-term care and home- and community-based services, including housing and transportation, so that persons who otherwise would choose to live in a nursing facility could purchase the support that makes home living possible.
Develop an Independent Service Organization (ISO) to provide employee management functions as an optional services for persons directing their own care.589
Data Collection and Analysis
- Collect data about where people live, the barriers to moving to a more integrated setting, and where the individual would prefer to live.
- Link data across programs.
- Collect data on anticipated needs.
- Collect data on waiting lists.
Comply with the state statutory requirement that anticipated needs be used to develop budget requests for the legislature.590
Advocacy and Quality Assurance
- Enhance support for self-advocacy.
- Remove barriers to consumer participation in decisionmaking.
Develop a consumer-driven quality assurance system that includes evaluations of consumer satisfaction.591
Although these recommendations are not final, it appears that the work group has essentially put off the identification of “the number of waiting lists, the number of people on each list, what services they need in order to move to a less restrictive setting, and a schedule for when those needs will be met.”
(b) PROGRESS IN COMMUNITY INTEGRATION
At the time the Olmstead planning process began, Maine had already made significant progress in reducing institutional populations. With the closing of the Pineland Institution in 1996 as the result of a consent decree, Maine became the fourth state to close its state institutions for persons with developmental disabilities. In 1998, the average combined daily census for the Augusta Mental Health Institute (AMHI) and the Bangor Mental Health Institute (BMHI) was 199, and by 2001 this had fallen to 170, 54 of whom had been institutionalized for more than 12 months.592 The reduction in psychiatric hospitalization was also the result in large part of litigation, a class action suit seeking community services for residents of AMHI.593 An unusual feature of Maine’s progress in community integration is decreased reliance on sheltered workshops, as evidenced by the fact that only 1 percent of more than 1,000 case closings in Maine’s vocational rehabilitation system were sheltered workshop placements.594
In 2000, 145 persons with developmental disabilities lived in nursing facilities in Maine; more than 150 persons were housed in ICFs/MR of seven or more persons; and the state had more than 5,300 licensed beds in large board and care facilities, more than 80 percent of them housing more than 10 residents.595 Maine’s nursing home population is falling: It decreased by 12.3 percent from 1996 to 2001, to 7,189; the number of beds fell by a comparable percentage; and Medicaid spending on nursing facility services fell by almost 10 percent during the same period.596 One reason for decreasing nursing facility use may be Maine’s use of pre-admission screening, using a uniform assessment instrument and a single, independent agency performing the assessments, to reduce reliance on institutional care.597 Another may be the rise in the use of assisted living facility services. The population of these facilities more than doubled between 1995 and 2001, from 2,174 to 4,602.598 Given the breadth of the work group’s charge and the large number of Maine elders living in congregate settings, it is rather surprising that the work group did not more explicitly address the unnecessary segregation of elders. Notably, the AAAs and grassroots organizations of elders did not appear to be represented on the work group.599
(a) THE PLANNING PROCESS
On July 25, 2000, Governor Glendening issued an executive order creating a Community Access Steering Committee (CASC) charged with developing “a comprehensive plan to expand community access opportunities for a broad spectrum of individuals with disabilities.” A year later, the CASC issued recommendations to the governor.
The committee was composed of the secretary and three other officials from the Department of Health and Mental Hygiene, the director of the Governor’s Office for Individuals with Disabilities, the secretary of Budget and Management, a representative from the governor’s office, three providers (including an assisted living provider), and three advocates.600The character of the committee’s recommendations was summarized succinctly by the Department of Legislative Services in a Fiscal 2003 Budget Overview: “Many of the committee’s recommendations were administrative in nature. … Some recommendations involve expanding services but do not specify funding sources or funding amounts[, f]or example, the exploration of opportunities to develop pooled funding on a regional basis to expand limited transportation resources, or expanding crisis response and respite care programs for people who live in the community.”601 Four members of CASC dissented from its final report.602
In September 2001, a broad coalition of disability organizations, including The Arc of Maryland, the Brain Injury Association of Maryland, the Maryland Statewide Independent Living Council, Maryland ADAPT, On Our Own of Maryland, the Maryland Association of Psychiatric Support Services, the Maryland Developmental Disabilities Council, People on the Go, and numerous other organizations, published a response to the CASC report.603 The Coalition charged, “The report does not move a single person nearer to freedom than they were prior to July 25, 2000, when the Governor issued his Executive Order.”604 The coalition made the following recommendations of its own:
Close state institutions, which “drain funds from the resource-starved community-based services system that most people with disabilities utilize and prefer.”
Bring in more federal dollars to support community living by taking advantage of opportunities to expand Medicaid, which state officials have ignored, and cease pouring Medicaid funds into private nursing facilities.605
Expand community capacity by securing a stable, well-paid, and well-trained community-based workforce (whereas the steering committee made similar recommendations, the report provides virtually no guidance about how to accomplish this).
Reviewing the coalition’s critique, the Department of Legislative Services acknowledged that community placement efforts had foundered but claimed that closure had “proven difficult” and was undermined by “budget woes on the community side of the mental health system.”607
In any case, the governor’s 2003 budget requested funding for only a handful of the CASC’s recommendations, which included funding for 60 persons to leave state-run psychiatric hospitals; 65 persons to leave state developmental disabilities institutions; and the first year of a five-year initiative to increase the salaries of direct support professionals (although this initiative had already been funded in the previous fiscal year before the CASC’s report was issued). Other provisions in the CASC’s recommendations that would require additional funding, such as increasing reimbursement rates for the Medicaid Personal Care Program, an automatic inflationary adjustment in community mental health service rates, and expansion of transportation resources, were not funded. Some of the “administrative” recommendations, primarily the creation of interagency work groups, were accomplished, whereas other recommendations were “under review.”608
Maryland’s new governor, Bob Ehrlich, has promised a radically different approach to Olmstead implementation. In fact, Governor Ehrlich’s campaign commitments in the area of disability policy embrace many of the recommendations of the coalition of advocates and begin with the express goal of “making Maryland the first state in the nation to comply fully with the landmark and historic U.S. Supreme Court Olmstead ruling.”609 The governor’s commitments include the following:
To oversee implementation of these recommendations, Governor Ehrlich promised to elevate the Governor’s Office for Individuals with Disabilities to cabinet-level status as the Department of Disability Services.610
Governor Ehrlich’s budget, introduced on January 17, 2003, is a significant first step toward making good on these promises. The budget includes $66 million in new funds for community services for people with developmental disabilities and mental illness in addition to a $128 million increase in general Medicaid funding.611
(b) PROGRESS IN COMMUNITY INTEGRATION
For a state of its size (it has a population of about 5 million), Maryland’s institutional populations are large, and its institutional costs are unusually high. In 2000, a total of 709 persons with developmental disabilities lived in large congregate settings, 548 of them in state institutions at daily costs of about $300 a day up to more than $450 for the largest institution, Rosewood. The average daily census of the state psychiatric hospitals was 1,293,612 and, according to the coalition, more than 2,800 persons with disabilities under the age of 65 are institutionalized in nursing facilities.613
From 1996 to 2001, nursing facility population in Maryland increased by 5.0 percent (to 25,361), the ninth highest rate of increase in the nation, and the supply of beds grew at an even faster pace, 9.2 percent, the sixth highest rate in the nation. Medicaid spending on nursing facilities increased dramatically between 1996 and 2001, by 78 percent. There is much force to the coalition’s argument that funds feasibly could be redirected from institutional to community services.
(c) SYSTEMS CHANGE ACTIVITIES
When the Glendening administration ignored the coalition’s recommendations, Maryland advocates turned to the legislature, which observers claim “has historically taken an active role in shaping Maryland’s health care policy.”614 In the 2002 legislative session, bills were enacted requiring residential facilities to provide information to residents about home- and community-based options at the time of admission and on an annual basis; providing a $14 million increase in direct care rates; and approving funding for 100 persons under the Community Choices waiver. However, legislation to establish a traumatic brain injury rehabilitation fund by increasing court costs and to capture Medicaid funding that is available to provide services to children at home who without services will be hospitalized did not pass.615
- Support consumer-directed outreach and support for people in institutions by funding expanded outreach programs.
- Raise the income level for eligibility for Medicaid from 49 percent to 100 percent of the poverty level.
- Implement the Medicaid buy-in and enable Medicaid beneficiaries to pay a premium to maintain Medicaid coverage after they enter the job market.606
- Downsizing institutions and reinvesting the savings from closing institutions into community-based services.
- Retaining a panel of experts to examine Maryland’s use of Medicaid dollars in the public mental health system.
- Creating an outreach program, including peer support from people with physical disabilities, developmental disabilities, and psychiatric disabilities, to identify nursing facility residents who may be interested in living the community.
- Addressing the shortage of community-based personal assistance staff (although the governor’s position statements stop short of any suggestion that the strategies for addressing this shortage will include higher wages).
- Supporting outreach to consumers in state developmental centers and psychiatric institutions.
- Creating services for people with mental illness caught in the criminal justice system.
- Developing a waiver for people with traumatic brain injury.
- Developing a new state program to provide interim rental assistance vouchers to people with disabilities waiting for Section 8 vouchers. The program would require recipients of these “transition vouchers” to apply for Section 8 vouchers and, when they receive them, to return their interim vouchers to the state for others to use them. The governor acknowledged, however, that because of the state budget deficit, it would not be possible to provide funding for this program in the 2004 budget.
(a) THE PLANNING PROCESS
In May 2000, Governor Cellucci issued an executive order directing the Executive Offices of Health and Human Services and the Office of Consumer Affairs to develop a five-year plan for long-term care. The report, issued on August 22, 2001, recommended expanding community services, enhancing coordination of services in a highly fragmented system, and addressing workforce development and quality assurance. Governor Jane Swift’s administration responded to the report by adding $6.1 million to her next budget to expand supportive housing, enhance adult day health programs, and develop 24/7 care teams to provide evening and nighttime coverage of home care services. The administration promised that although it did not intend to reduce spending on nursing facility services, it would significantly expand funding of community services in the future.616 To put the additional funding in perspective, the Health Care Finance Working Group reported in June 2001 that “the financial conditions of most home health care providers and adult day health providers are tenuous” and that a gap of $20 million to $25 million existed statewide between revenue and the actual cost of home health care.617 In any case, the administration reversed course in July 2002 when, in response to a loss of $2.4 billion in the state’s revenue base, the governor proposed a budget reduced by $1 billion that, according to Mass Home Care, an association of home care providers, “would cause home care services to the elderly to fall to levels similar to those of 1981-more than 20 years ago.”618
In July 2001, after advocates for elders and persons with disabilities charged that the state was doing little or nothing to respond to Olmstead,619 the governor established an Olmstead Advisory Group and directed that an Olmstead plan be developed by an Interagency Steering Committee and an Interagency Leadership Team composed of the secretaries or commissioners of the Executive Offices of Finance, Elder Affairs, and Health and Human Services (including the Division of Medical Assistance, the Massachusetts Rehabilitation Commission, and the Departments of Public Health, Mental Health, and Mental Retardation) and the Department of Housing and Community Development (DHCD). The planning team’s explicit inclusion of the state housing agency in the planning process is unusual and certainly a positive step. The advisory group, which included advocates and community providers, conducted a series of listening sessions between November 2001 and January 2002 and received input from nearly a thousand persons. Planning documents were prepared by the Center for Health Policy and Research at the University of Massachusetts Medical School.620
On July 31, 2002, the Massachusetts Executive Office of Health and Human Services released the first phase of theOlmstead plan, called “Enhancing Community Based Services.” The document is basically a “plan to plan,” although it does outline steps that are logical and consistent with the HHS guidelines. For example, the plan calls for an inventory of people in institutions to identify everyone who is in an institution or at risk of institutional placement and to determine how many people would like to leave the institution or could leave if they had adequate support and if funds could be redirected toward their support. The plan also asks that a single screening and assessment process be developed to identify the needs of all people with disabilities who apply for publicly funded long-term care services. All state agencies providing long-term care services would be required to screen persons eligible for Medicaid who apply for institutional services to divert those persons from institutions by “ruling out” community services as an option before admission is allowed.621 The plan calls for the state to establish a baseline of expenditure and use rates for facility-based services and use waiting list data to identify unmet needs for community services that will serve as a basis for planning and policy formation in the future.622 The plan’s recommendations in the area of housing are thoughtful and creative, reflecting the presence of DHCD at the table. Some examples follow:
- Have DHCD and MassHousing explore what would be necessary to include universal design in new units they fund or finance.
- Require use-of-lease addendums in publicly funded housing that allow the manager to move nondisabled households from accessible units to other available apartments as needed to accommodate persons with disabilities.
- Develop new housing to the greatest degree possible in areas serviced by accessible public transportation or in areas where fundamental amenities are in walking distance.
- Insure all existing publicly financed housing has completed Section 504/ADA self-evaluations and implemented transition plans.
- Expand DHCD’s definition of “homeless” to include persons living in rest homes, rehabilitation facilities, and group homes.
- Work with HUD to change federal law governing project-based Housing Choice Vouchers to allow owners/service providers to identify eligible applicants and maintain waiting lists for project-based units to allow housing with services to be appropriately matched to persons with disabilities.
- Have DHCD and service agencies work together to ensure that Project-Based Section 8 resources are used and allocated to best serve the needs and preferences of persons with disabilities, including the development of integrated housing models.
- Have DHCD and MassHousing conduct use reviews to ensure that targeted Section 8 programs are fully used.
- Research whether underused housing developments for elders and persons with disabilities can be reconfigured to provide more usable and desirable housing units.623
The next phase of the planning process is a document to be released in January 2003 that is to form the basis of funding proposals for the 2004 budget. In the meantime, the plan set some modest goals: Discharge 157 persons receiving inpatient mental health services from Medfield State Hospital (which is to be closed) and other facilities to new created residential services; create six new Programs of Assertive Community Treatment teams; increase Statewide Head Injury Program’s (SHIP) bed capacity by 5 percent; and provide 450 elders already enrolled in the home- and community-based waiver program with enhanced community services as an alternative to nursing facility placement. The most significant and costly initiative called for in the plan, which already was required by the consent decrees and court orders in Rolland v. Cellucci and Boulet v. Cellucci, was the addition of 650 community-based residential placements for people with developmental disabilities.624
Reaction to the plan from advocates was not particularly positive. Attorney Steven J. Schwartz, executive director of the Center for Public Representation, noted from reading the plan, “you don’t know how many people in Massachusetts will ever move from institutions to the community and you don’t know if it will take two years or 2,000.”625 Mass Home Care pointed out that no new state funding is provided for implementation of the plan and that the activities called for are to be carried out using existing resources or federal funds.626
Advocates supported legislation introduced by Senator Berry and Representative Kennedy to maximize federal funding for home- and community-based services and enable Medicaid dollars to follow persons from institutions to the community. S.B. No. 474 and its companion House bill would have required that “an individual eligible for or receiving acute or chronic long term care must be given the opportunity to have those Medicaid dollars follow them to the community and choose the personal care option in the community that best meets the individual’s needs. The Division shall apply for any necessary waiver from the federal government to allows funds received pursuant to Title XIX of the Social Security Act to be used for any services necessary to support individuals in their own homes in the community.”627 However, the bills died in committee.628
(b) PROGRESS IN COMMUNITY INTEGRATION
Massachusetts is still a heavily institutional state. It housed 2,792 persons with developmental disabilities in large congregate facilities in 2000. The large population of persons with developmental disabilities in nursing homes (1,499) will be reduced, however, by implementation of the consent decree in Rolland v. Cellucci, and the future of the state MR/DD institutions is uncertain given the announcement of Governor Mitt Romney in early 2003 of plans to close all Massachusetts’ six developmental disabilities institutions, beginning with selling Fernald Center, the oldest state institution in the nation, and its large campus in the coming fiscal year.629
In 2001, 528 persons in state psychiatric facilities had lived in those facilities for more than a year. Massachusetts has one of the highest nursing facility populations in the nation. In 2001, it ranked sixth in nursing facility population when expressed as a percentage of the population as a whole. Both the number of nursing facility residents and the bed supply have increased by more than 2 percent from 1996 to 2001, but surprisingly, this has been accompanied by a decrease by 14 percent in Medicaid spending during the same period.630
(a) THE PLANNING PROCESS
The National Council of State Legislatures reported in March 2003 that Minnesota does not have an official Olmstead task force, because the state already offers many options to support people with disabilities and elders in the community.631State officials cited the fact that Minnesota has closed its state institutions for persons with developmental disabilities and that with only a few developmentally disabled individuals remaining in private ICFs/MR and several hundred people with mental illness in state facilities, the state’s progress is sufficiently rapid. Minnesota is the largest state to close its state-operated congregate developmental disabilities institutions, and in 2001 it had only 82 persons in psychiatric facilities who had been there for more than a year.632 Medicaid nursing facility expenditures in Minnesota decreased by 8 percent from 1996 to 2001, although its nursing facility use is still about 160 percent of the national average.633
However, the Minnesota disability community disagreed that the state did not need to respond to Olmstead and asked the Minnesota Department of Human Services (DHS) to develop a detailed plan to promote community integration. In August 2000, the assistant commissioners of the Minnesota DHS responsible for the Aging Initiative and for health care informed advocates that they saw no need for a plan. On December 22, 2000, Pamela S. Hoopes and Anne L. Henry of the Minnesota Disability Law Center (DLC) wrote to the two assistant commissioners, repeating their request that the state take action to place inappropriately institutionalized persons in the community.
DLC pointed out that, according to DHS estimates, 2,600 Minnesotans under age 65 were living in nursing homes, whereas the state Department of Health placed the number at approximately 3,500. These persons were not being assessed for community placement nor provided with discharge plans specifying the community resources needed to support them in the community. DLC asked that DHS address the insufficiency of the services provided under the state’s waiver for persons with physical disabilities and squarely address the barrier presented by the lack of affordable housing.
DLC also pointed to a statement by the state medical director that approximately 67 of 232 persons receiving psychiatric services at Anoka Metro Regional Treatment Center could live in a less restrictive setting and remained at the center because of insufficient community resources and to estimates by other directors of regional treatment centers that approximately 20 percent of the patients now in the regional treatment centers are ready for discharge yet remain in the hospital for lack of community supports. DLC called the pace of DHS’s community initiatives “glacial.” For example, DHS had agreed to change its screening tool for personal assistance services because it failed to identify the personal care needs of persons with mental illness, yet it had failed to do so.
DLC asked DHS to take the following steps:
Screen and assess all current residents of regional treatment centers, Rule 36 facilities, and nursing facilities for possible placement in a more integrated setting. “The assessment should include identifying needed supports in the community, including appropriate housing or programmatic settings…. Each assessment should result in an action plan that describes how needed services will be obtained and how barriers to more integrated placement will be removed. The plan must include a time table.” DLC asked that the assessments be completed by April 1, 2001.
Provide the disability community with summary information about persons in regional treatment centers, Rule 36 facilities, and nursing facilities who have been identified as being ready for community placement, including information about the barriers that prevent their return to the community.
Within 12 months, fund services for persons with developmental disabilities who need home and community waiver services and make available consumer-directed service options in every county within three months.
Raise pay rates for personal assistants to levels that will allow individuals who need these services to get them.
Cease promoting community commitment of people with mental illness and actively support increased availability of voluntary services. Reserve 20 percent of the beds in the regional treatment centers for people with mental illness who voluntarily seek and need that level of treatment.
(c) SYSTEMS CHANGE ACTIVITIES
Although Minnesota is not developing an Olmstead plan designated as such, the DHS produced a report to the Minnesota legislature in February 2002 that addressed several Olmstead themes, though only in the context of services for elders. The report, “Keeping the Vision: Report to the Minnesota Legislature, Progress in Reshaping Long-Term Care in Minnesota,” was a response to long-term care legislation enacted in 2001, the purpose of which was to reduce the state’s reliance on institutional services and expand the availability of home- and community-based options. The legislation was probably driven by state officials’ concern about the potential for escalating future long-term care costs.634 The statute established a local planning process in which counties were required to analyze the present and future capacity (over the next 10 years) of services for elders, identify the gaps in services, and complete a service development plan describing how their objectives and action steps over the next year would address these gaps.635
Overall, the counties reported a significant oversupply of nursing facility beds and a high need to develop transportation, in-home respite, caregiver support, chore services, affordable rental housing with services, and foster care. The most common barriers to further development of these services were lack of start-up funding, service delivery problems in rural areas, lack of staff, low reimbursement, elders’ lack of awareness of services, need to remodel existing buildings, and problems finding and providing services in existing housing.636 The report also found that minority elders in Minnesota tend not to seek traditional services and that more culturally sensitive service providers are needed, especially in urban areas.637
The report used a set of “long-term care benchmarks” to measure the progress of Minnesota counties toward “rebalancing” the long-term care system in the direction of more meaningful access to home- and community-based services. The benchmarks are (1) ratio of senior housing units to persons 65 and older; (2) percentages of non-case mix and elderly in Elderly Waiver/Alternative Care Programs (a measure of the extent to which persons with more significant disabilities are receiving services in the Elderly Waiver and Alternative Care programs); (3) percentage of nursing home residents 65 and older who are Case Mix A (a measure of the percentage of nursing facility residents with less significant disabilities); (4) ratio of nursing facility beds to persons 65 and older; and (5) percentage of total long-term care spending for nursing home care.638 The emphasis on a small number of quantifiable benchmarks to measure progress is a clear, simple way to measure progress and evidently stimulated the counties to consider creative solutions to close the gaps they identified in the planning process. For example, in the area of housing, the counties’ proposal included “creating a user-friendly, fast-track small remodeling grant program for providers of adult foster care to create more units”; working with the Housing Redevelopment Authority (HRA) and the Area Agencies on Aging to establish assisted living in HRA sites; and leveraging county housing funds with other affordable housing funds to create assisted living development.639
Another promising practice in the 2001 legislation is offering incentives for closing nursing facility beds. Most states have an oversupply of nursing facility beds; Minnesota had dealt with this phenomenon with legislation in 2000 that allowed nursing facility operators to place beds in “layaway” for up to five years, that is, to take them temporarily out of service and have them be treated as unlicensed during that interval. In the first 18 months of the “layaway” program, nursing facility operators had taken 2,350 nursing facility beds (of a total of 45,103) out of service. The 2001 legislation goes further and establishes the goal of closing or partially closing up to 5,140 beds during fiscal years 2002 and 2003.640 This approach is innovative and has made Minnesota one of the leading states in the nation in reduction of nursing home beds: The state accomplished a 9.5 percent reduction from 1996 to 2001. Certainly that sort of reduction is warranted in a state with such heavy use of nursing facility services.641 With 38,052 persons living in nursing homes in 2001, Minnesota ranked second highest in the nation in nursing facility population when expressed as a percentage of the population as a whole age 65 and older.642
(a) THE PLANNING PROCESS
On April 28, 2000, Governor Carnahan signed an executive order establishing the Home and Community-Based Services and Consumer-Directed Care Commission. The Commission’s objective was to develop “a comprehensive, effectively working plan as contemplated by the Supreme Court in Olmstead.”643 The executive order instructed the commission to
(1) identify the current number of and current level of funding for home and community-based services (HCBS); (2) develop a tool for assessing the effectiveness of these services and programs; (3) identify the number of individuals in Missouri that are institutionalized; (4) identify the number of waiting lists for HCBS and consumer-directed programs and evaluate the pace at which individuals move from these lists; (5) provide individuals with disabilities who may be eligible for HCBS with information regarding this option; (6) recommend any changes that may be needed to improve HCBS; and (7) recommend any potential means of expanding HCBS.644
Fifteen persons were appointed to the commission: the directors of the Departments of Social Services, Mental Health, and Health; the commissioner of the Department of Elementary and Secondary Education; four representatives of the Governor’s Council on Disability; three persons with disabilities or family members; and two each from the state Senate and House of Representatives.645 The commission held hearings around the state to receive input on the plan, and four stakeholder subcommittees developed recommendations for the commission’s consideration.646
Even before the plan was published on December 31, 2000, Governor Carnahan signed into law an appropriations bill, H.B. 1111, allowing consumer choice in the use of long-term care funds. The bill, sponsored by Representative Quincy Troupe and Senator Joe Maxwell, provided that
an individual eligible for or receiving nursing home care must be given the opportunity to have those Medicaid dollars follow them to the community and choose the personal care option in the community that best meets the individuals’ needs. This includes the Consumer Directed Medicaid State Plan Amendment that is administered by the Department of Vocational Rehabilitation and the Department of Education. … [I]ndividuals eligible for the Medicaid Personal Care Option must be allowed to choose, from among all the options, that option which best meets their need; and also be allowed to have their Medicaid funds follow them to whichever option they choose.647
The legislation was signed into law on June 28, 2000.
The Missouri Olmstead plan describes existing programs, participants, and funding; discusses and makes recommendations concerning development of outcome assessment tools; identifies the number of institutionalized people with disabilities in the state; and identifies the number of waiting lists for services, identifies the number of people on them, and analyzes the pace at which the lists move. It examines whether the available information on community services is adequate for people to make informed choices.
The plan recommends changes in Missouri’s service system in seven areas: (1) consumer-directed personal care assistance, (2) housing, (3) interagency coordination, (4) Medicaid services, (5) funding mechanisms, (6) transportation, and (7) employment opportunities for people with disabilities. Specific recommendations include increasing availability of personal care assistant services, increasing their wages, and giving them more training; clarifying the legal status of having them administer medicines and perform other nursing functions; and improving background checks. Others include improving enforcement of fair housing laws; increasing funding for accessible, affordable housing; exploring various tax credit options, requiring use of universal design (making housing routinely accessible to disabled people) in any state-funded housing program; and making information about housing more available through several measures, such as a Web page.
The plan recommends establishing an interagency mandate to “blend funding streams” so people can receive help from more than one agency, designating a lead agency when several agencies are involved with one client, and creating a universal application form for all programs. Other recommendations are to increase Medicaid income and asset limits; expand the types of exempt assets; explore covering all Medicaid waiver services as state plan services; monitor the pace of waiting lists; and make Medicaid services comparable between nursing homes and community settings. The plan recommends additional support during the transition process, such as implementing a person-centered approach, allowing people to set aside part of their Social Security checks while still in the institution to create funds available to set up the new household, and providing extra funding for the transition.
The plan contains timelines for various actions and the agencies responsible for those actions during fiscal years 2001 and 2002. However, it does not set specific longer-term goals.
The Missouri Olmstead plan, along with H.B. 1111, which requires that funding follow the person from nursing facility to community, is generally considered a model response to the HHS guidelines. However, in some respects the plan fell short of recommendations made by advocates. A draft plan submitted by advocates during the planning process recommended that state agencies perform a needs assessment for each current institutional resident and identify “who wants to move to the community and what is needed to live in the community.”648 By December 1, 2000, the advocates proposed, assessments would be completed and the state would have a list of the names and locations of persons who want to move to the community and the specific types of support, in hours and funding sources, they need to live in the community. During the next year, the persons so identified would move to the community according to a planned transition schedule.649 The final plan does not require that institutional residents who could move from institutions actually be identified and provided with opportunities to move. Rather, the plan recommends that state officials measure the rate of community placement, as well as barriers to placement; develop processes to interview individuals to determine if they had informed choice; and monitor waiting lists, documenting why someone is on the list for longer than 90 days.650
It is fair to say that the primary strategies for reducing unnecessary institutionalization in the Missouri plan are strategies for informing consumers about community alternatives. The strategies for facilitating informed choice are thoughtful and comprehensive, but these strategies alone are unlikely to be able to overcome the barriers to community placement without more fundamental service system reform.
The state’s Olmstead plan contains no specific goals or targets for people who should move to the community to do so. The planning commission was not able to identify the number of persons living in other types of institutions, such as board and care facilities, juvenile detention facilities, or residential treatment facilities, nor did it recommend further work to identify people who are institutionalized unnecessarily in those facilities. The plan does not address the pace of transition, the movement from waiting lists, or how or whether institutional residents will be assessed for community living. Also, the plan does not identify gaps in the service system, the extent to which existing programs can serve as a framework for developing services, or the changes or improvements that need to be made in existing services so people can be integrated into the community.
It should also be noted that the personal care options cited in H.B. 1111 provide only six hours of personal care per day, and thus, according to advocates, the law is not adequate to meet the needs of all persons who are eligible for nursing facility services.651
Another relative weakness in the plan is in the area of housing. State housing officials were not at the table during development of the plan, and although the plan does contain a number of recommendations to address the housing needs of persons with disabilities, they are quite general and consist primarily of recommendations to “explore” additional housing options and “enhance” availability of desired housing options.652
To oversee implementation of the plan, Governor Holden created the Personal Independence Commission in an executive order on April 10, 2001. The commission’s charge includes examining whether existing programs provide people with disabilities adequate information about programs and services, monitoring the transition of people in institutions to the community, and recommending modifications to existing community services.653
State officials supported other legislative initiatives to implement the Olmstead plan. In May 2001, the legislature passed HS HCS S.B. 236, which opted into the Ticket to Work program and allows working people with disabilities to buy into Medicaid on a sliding fee scale, raised the Medicaid income eligibility guidelines to 100 percent of the poverty level over three years, and adopted a program for trained disability advocates to inform people in institutions of community alternatives.654 However, most of the legislation introduced in the 2002 legislative session did not pass, including H.B. 1469, which would create parity between institutional and noninstitutional eligibility for Medicaid; H.B. 1719, which would establish the Missouri Quality of Care Trust Fund to fund various long-term care initiatives and programs; H.B. 1309, which would require the release of information about violations by nursing facilities to the media; H.B. 1497, which would create a tax credit for buildings of universally designed lifetime homes; and H.B. 1647, which would require all new state housing construction to comply with universal design.
Like other states, Missouri has experienced funding shortfalls in the past year. As a result of cuts in the budget of the Division of Mental Retardation/Developmental Disabilities for community programs, no new community services will be provided except in crisis situations, and the waiting list for services is not likely to be reduced. Funding for durable medical equipment also was reduced. However, the Ticket to Work Buy-In was funded, including additional funds for personal assistance services to persons who need them to take advantage of the buy-in provision.655 One of the specific recommendations of the Olmstead plan, obtaining budget authorization for a waiver to support people with head injury, was not funded.
But unlike some other states, Missouri also responded to the funding shortfall by seeking to cut institutional costs, including a reduction of $20.7 million in Medicaid payments to nursing facilities and a smaller cut in funding for sheltered workshops.
(b) PROGRESS IN COMMUNITY INTEGRATION
Missouri institutional populations are large, and movement to the community has been slow. Medicaid expenditures on nursing facility services grew by a remarkable 88 percent from 1996 to 2001,656 and in 2000 the Olmstead planning commission found that more than 26,000 Division of Aging Medicaid recipients were living in institutions.657 The population of state developmental disabilities institutions actually increased from 1993 to 2000, from 1,480 to 1,509, although, commendably, the state has significantly reduced the number of persons with developmental disabilities living in nursing facilities (from 2,600 in 1990 to 830 in 2000) and in non-Medicaid-funded institutions (from 1,800 in 1990 to 432 in 2000).658 In comparison, the number of persons who have been institutionalized in state psychiatric institutions for more than a year is relatively small, 328 at the end of 2001.659
Missouri’s nursing facility population was 38,706 in 2001, making it 11th in the nation in nursing home residents as a percentage of the population age 65 and older. Although the nursing home population remained static from 1996 to 2001, the number of beds grew by 5 percent, a significant increase.660
(c) SYSTEMS CHANGE ACTIVITIES
Like its Olmstead plan, Missouri’s Systems Change grant focuses on facilitating informed choice. The grant is being used to develop resources for training on informed choice, train consumers on how to exercise informed choice, and conduct a pilot study to determine which strategies are most successful in facilitating movement to community settings.661
(a) THE PLANNING PROCESS
In response to Olmstead, the Montana Department of Public Health and Human Services (DPHHS) has issued two task force reports, one from the Senior and Long Term Care Division and the other from the Disability Services Division. The Senior and Long Term Care Division established an Olmstead Advisory Council “to make recommendations to the division and assist with the development of the division’s comprehensive, effectively working plan, using the guidelines established by the Health Care Financing Administration and the Office for Civil Rights.”662 The council met six times in different areas of the state to develop its recommendations, and the chief of the Community Services Bureau then developed a Biennium Work Plan for 2002-2003 that is responsive, in part, to the council’s recommendations. The work plan focuses conspicuously on information dissemination about community-based long-term care services and training of personal assistance workers, case managers, and other community service providers.663 It also calls for a study of the impact of transforming some home- and community-based services to state plan services for “a thorough exam of caregiver shortage issues and methods to address them” and the completion of a Traumatic Brain Injury (TBI) implementation grant. Although the plan had a goal to “Increase availability of all community services” and an objective of developing a legislative proposal to increase funding for community services, it set no specific goals, and the proposals for increased funding were equally vague.664
The Disability Services Division also developed a Biennial Work Place for 2001-2003 as part of its Olmstead plan. The plan calls for developing up to three new community residential homes to allow 12 persons to move from Montana Developmental Center and Eastmont Human Services Center, Montana’s two development disabilities institutions. The plan suggests that more than 12 persons have been recommended for community placement because it also contains a goal of developing a legislative request to create community services for other persons who have been referred to the community. The plan contains goals to enhance “informed choice” through education about community options.
The body of the 65-page plan acknowledges that “there is concern that there are persons committed to the residential ICF/MR facilities who would best be served in community settings but who are not referred to be considered for placement into community settings and services” as well as “concern that persons who would best be served in community settings are being diverted into the residential ICF/MR facilities due to needs or crises in relation to those persons that are poorly attended to when they arise.” However, the work plan does not set a target date for identifying persons who could be served in community settings, nor does it address the development of crisis prevention services.665
The plan acknowledges that “DPHHS does not have adequate appropriations from the 2001 Legislature by which to initiate an expansion of community service opportunities,” but states that the department will evaluate its services and funding sources to determine if more state general fund monies could be used as a match for Medicaid funds to make possible the expansion of the Medicaid-funded home and community services.666 According to the Montana Advocacy Program, DPHHS did identify state funds that could be used for the Medicaid match and would have enabled it to implement a provision in the work plan to develop a “transitional living program” for the developmental disabilities offender population, which is growing significantly at the Montana Developmental Center, to move to community settings. However, the governor would not allow the funds to be used for this purpose; they were used instead to meet shortfalls in the state general fund.667
Perhaps the most unusual provision of the Montana plan is a commitment to change the department’s system for assigning consumers to private providers. CMS determined that the existing system, in which the department awarded provider contracts through competitive bidding on the basis of responses to requests for proposals issued by the department, violated Title XIX’s choice of provider requirement, 42 U.S.C. § 1396a(a)(23). The department stated that it has developed a work plan to develop a new model that will allow consumers to select their own providers from those who are qualified to provide the service by July 1, 2003. The plan will address how reimbursement for services will be structured, how small providers will be reimbursed for vacancies, how cost per person will be determined, and the type of waiver services that should be put in place to accommodate the change.668
(b) PROGRESS IN COMMUNITY INTEGRATION
In the past five years, movement to the community from Montana developmental disabilities institutions has virtually stopped, and hovers around 130 persons in two state-operated facilities and another 162 in nursing facilities. In the past year, admissions and readmissions to the larger of the two institutions outnumbered discharges, to a large extent because of the increasing admissions of persons labeled as “developmentally disabled offenders.”669 In 2001, 51 persons had been institutionalized in state psychiatric hospitals for more than a year. A nursing facility population of 5,928 makes it the 12th highest in the nation in nursing home residents when expressed as a percentage of the population age 65 and older. Although the number of nursing facility residents declined by 8 percent from 1996 to 2001, the supply of beds increased by 2.8 percent, an indication that the state has not tied population decline to bed closure.670 Medicaid nursing facility expenditures increased by about 10 percent between 1996 and 2001.671
Institutionalization of children and adolescents with mental illness has increased from 51 in 1997, the year in which the state first adopted managed care to reduce costs in mental health, to 160 in 2002. Montana health care providers have identified this as a “critical problem.”672
(c) SYSTEMS CHANGE ACTIVITIES
Montana has a Community-Integrated Personal Assistance Services and Supports grant to alleviate competition for personal assistance personnel. Grant activities include developing a central mechanism for recruiting, screening, and training attendants; tapping underused sources of recruitment, such as older workers; developing a public relations campaign; and developing training modules and caregiver support groups.673
(a) THE PLANNING PROCESS
Nebraska does not have a task force or other formal method for responding to the Olmstead decision. Rather, the state has focused its efforts at the level of individual planning on placing and supporting qualified individuals with disabilities in community settings; on expanding community residential services for persons with mental illness; and on increasing capacity in community services in mental health, substance abuse, and developmental disabilities.674
(b) PROGRESS IN COMMUNITY INTEGRATION
In the past five years, Nebraska has made some progress in reducing the number of persons with developmental disabilities institutionalized in nursing facilities from 454 to 115, but movement from state-operated developmental disabilities institutions and large private ICFs/MR has virtually ceased and hovers around 400 and 240, respectively. At the end of 2001, 70 persons were institutionalized in state psychiatric facilities who had been there for more than one year.
Although Nebraska reduced the number of persons living in nursing facilities by 8.9 percent between 1996 and 2001, which compares quite favorably to the nation as a whole, by 2001 the state still had 14,492 nursing facility residents and was second only to its neighbor Iowa in the number of persons living in nursing facilities when expressed as a percentage of the state’s overall population age 65 and older.675 Nursing facility beds were reduced by only 4.6 percent from 1996 to 2001,676 and Medicaid spending on nursing facilities increased by 75 percent during that period.677 In 2000, Nebraska began to implement a grant program to reduce excess nursing facility capacity by converting nursing facility space to assisted living; this may result in a technical reduction in the number of beds, but only replaces one form of congregate living with another.678
An unusual study of the residential and daytime settings in which people in Nebraska, Wyoming, and South Dakota lived and worked in 1999 found that of all the persons receiving developmental disabilities services in Nebraska in 1999, only 82 percent were living in the residential setting recommended by professional judgment, and 77 percent were spending the daytime in the setting recommended by professional judgment. These conclusions were based on an analysis of data from the Inventory for Client and Agency Planning (ICAP) collected for almost 3,000 consumers of developmental disabilities services in a wide variety of settings. The report suggests that most, if not all, of the persons who were not in the setting recommended by professional judgment were in a setting that the professionals supporting that individual considered unnecessarily segregated, for instance, living in an institutional instead of a community residence or a group home instead of a supporting living arrangement.679
(c) SYSTEMS CHANGE ACTIVITIES
The Nebraska Health and Human Services System (HHSS) has received a Real Choice grant to develop consumer-directed services for people with developmental disabilities and behavioral health needs and elders. Activities to be supported by the grant include access to services through a single point of entry; standardization of regulations, policies, procedures, and contractual language; development of a training curriculum; and public awareness.680
- NEW JERSEY
(a) THE PLANNING PROCESS
The impetus for New Jersey’s Olmstead planning process came from New Jersey Protection and Advocacy, Inc., which convened an Americans with Disabilities Act coalition composed of 90 organizations and developed a set of principles for an Olmstead plan. The coalition persuaded Governor Whitman and the New Jersey Department of Human Services (DHS) to convene an Olmstead Stakeholder’s Task Force in November 2000.681 The task force was composed of consumers, advocates, government agency representatives, providers, and other interested parties. The plan was to be published in early 2002, but a change in administration intervened, and a pending review by the new governor has delayed its release.682 However, an advocate who was active in the ADA coalition reported that the plan drafted by DHS does not include the action steps proposed by the coalition for identifying institutionalized persons who would like to live in the community, the costs associated with institutional living, the services that currently exist, and the recommended changes; nor does the plan contain measurable outcomes, target dates, or provisions for monitoring and quality assurance.683
Notably, the New Jersey Department of Community Affairs, the state housing agency, was invited to the task force and committed 40 Section 8 Project Access vouchers to Olmstead implementation.684 However, the planning group does not include representatives from the Departments of Education or Transportation.685
Before Olmstead, DHS conducted another planning effort, called Redirection II, to improve mental health services both in institutions and the community. The Redirection II plan was based on independent clinical assessments of 1,051 nonforensically involved consumers in the state hospitals, 711 of whom had been institutionalized for more than six months. As a result of the independent assessments, the planning group concluded that 388 persons could be receiving services and support in alternative settings and that the hospital beds currently being used to house these persons could eventually be taken off line.686 Unfortunately, however, the plan contemplates that at least some of the 388 persons would move to nursing facilities, residential health care facilities, and group homes.687 The plan also provides for replacement of the Greystone Park Psychiatric Hospital with a smaller facility of 390 beds. In response to public comments, including strong opposition from state employees’ unions, the size of the proposed new facility was increased to 400 beds, with room for expansion to 450 if needed.688
Redirection II was not coordinated with development of the Olmstead plan. Nevertheless, it contains many elements of anOlmstead plan. It considers the extent to which existing programs can serve as a framework for developing services and the level of awareness and agreement among stakeholders and how that foundation can be strengthened. It discusses the improvements that can be made to support people with disabilities in the community, and it is based on assessments by independent, university-based evaluators who did not consider the services currently available in the community. The assessment process included reliability measures that further enhance its objectivity. The plan identifies the community-based services available in the state, assesses the extent to which these programs are able to serve people with disabilities in the most integrated setting appropriate, and identifies the improvements that can be made in existing services. It considers how the system might be made more comprehensive and the adequacy of the support the system provides for people at risk of unjustified institutionalization. It looks at funding by addressing some of the infrastructure changes that will be needed to support implementation. However, the plan does not address the pace of transition or the needs of persons on waiting lists for services, and there is no mention of consumer choice.689
(b) PROGRESS IN COMMUNITY INTEGRATION
In developmental disabilities, New Jersey is one of the most institutional states in the nation. In 2000, 4,757 New Jerseyans with developmental disabilities lived in large congregate institutions, 3,556 in state institutions, and the rest in nursing facilities and other large private institutions.690 The trend toward movement to the community has been steady but slow. New Jersey has not experienced litigation against its developmental disabilities institutions, and institutional closure has resulted in transfer of residents with more significant disabilities to other institutions, whereas those placed in the community were persons with higher cognitive abilities who presented fewer challenges.691 Because of the state’s extremely low investment in community services, the number of persons waiting for services in the community grew from 767 to 5,124 between 1986 and 1997. In the late 1990s, the waiting list crisis had become so acute and visible that a Waiting List Work Group recommended closure of at least three of the state’s remaining developmental disabilities institutions to redirect funds to the community.692
In mental illness, during the past 12 years, the reduction of institutional populations has been similarly steady but slow. The state has reduced the population of state psychiatric hospitals from 3,069 to 2,145 (30 percent), reduced annual admissions from 5,611 to 3,633 (35 percent), reduced the number of readmissions by 56 percent, and increased spending on community services by 175 percent.693
With 45,672 nursing facility residents in 2001, New Jersey was in the middle rank of states in nursing home use when expressed as a percentage of the total population age 65 and older. However, the state ranked eighth in the nation in growth of the nursing home population from 1996 to 2001 and fifth in the increase in the number of beds;694 during this period, Medicaid expenditures on nursing facility services nearly doubled.695 These data are significant in light of New Jersey’s claim that it has diverted thousands of elders from nursing facilities by its single entry system for long-term care support, which is discussed below.
Human services in New Jersey have not been as hard hit by funding shortfalls as in other states. New funding has been made available to support the movement of residents of state psychiatric institutions identified for community placement under the Redirection II initiative. However, the 2003 budget also contains funding for 265 new positions in the state psychiatric institutions and an astonishing 514 new positions in the developmental disabilities institutions in response to the threat of decertification for failure to meet federal standards.696
(c) SYSTEMS CHANGE ACTIVITIES
Beginning in 1996, New Jersey phased in a single point of access system for all services for elders called Easy Access, Single Entry (EASE). The initiative was supported by a grant from the Robert Wood Johnson Foundation and phased in over a five-year period. The system uses a toll-free caller system that can identify the county from which the call is made and automatically transfer the caller to the single entry office for that county. Callers can obtain information, receive counseling about available public benefits, schedule comprehensive assessments, and arrange for services to be provided. Although the program appears well designed and had strong support from Governor Whitman, it has not reduced resources spent on nursing facility services. Indeed, Medicaid spending on nursing facilities skyrocketed after the program neared full implementation in 1999.697
Since 1997, New Jersey has operated a Cash and Counseling demonstration project supported by CMS under a 1115 waiver and the Robert Wood Johnson Foundation. The program provides beneficiaries with cash rather than services from an agency. Persons enrolled in the program may hire friends, relatives, neighbors, or other persons of their choice except for a spouse or legal guardian. They may use the cash benefits of the program to purchase any goods and services related to their personal care. Analysis of the outcomes of the Cash and Counseling program has shown that costs are about 10 percent lower than the cost of agency-based services and that service delivery is much more reliable than is the case with agency-provided services.698
New Jersey also has a Real Choice Systems Change grant to expand housing and personal assistance resource for people with disabilities. Activities include seed money for innovative housing projects, creation of a personal assistant registry, creation of a rapid response personal assistant backup system, and development of an educational program for case managers and other frontline staff on the benefits of consumer-directed service models.699
- NEW MEXICO
(a) THE PLANNING PROCESS
In 2001, the New Mexico state senate requested, in Senate Memorial 33, that the state Department of Health and the Human Services Department “report progress on developing a state plan in response to the U.S. Supreme Court decision in Olmstead v. L.C.” The Legislative Finance Committee held hearings during the 2001 interim to address Olmsteadplanning and recommended that the state’s plan should include the following tasks:
- Assessing people who are at risk for institutionalization.\
- Defining institutionalization and reviewing and measuring placement activities in institutions.\
- Developing the service infrastructure within the constraints of the personal care attendant and nursing aide shortage.\
- Finding accessible, affordable community-based housing.\
- Accessing transportation.\
- Identifying sources of funding within state budgets.700
In the next legislative session, the state senate again passed a resolution, Senate Joint Memorial 54, asking that a task force be created under the direction of the Governor’s Committee on the Concerns of the Handicapped to develop a comprehensive, coordinated state plan in response to Olmstead and to report its findings to the Legislative Finance Committee in October 2002. The memorial also proposed that the Department of Health, the Human Services Department, other appropriate agencies, and persons with disabilities participate in the planning process.701
State officials’ response to the legislative measures was tepid at best. The director of a New Mexico Center for Independent Living reported that the Department of Health and the Human Services Department “held an Olmsteadmeeting where they simply stated what they were [already] doing.”702 In June 2002, an official of the Long Term Care Division of the New Mexico Department of Health reported that the department had decided that it “has no Olmsteadexposure because the DOH was far ahead of Olmstead with respect to community-based care.”703 She added that it was a “myth” that Olmstead required institutional closure, although at the same time she acknowledged that the state does not have adequate community services for persons with chronic mental illness, that funds for mental health services had been cut in the recent legislative session, and that “the infrastructure has declined over the last two years.”704 She reported the Department of Health had agreed to work with the Governor’s Committee on the Concerns of the Handicapped, but only on housing and transportation issues.705
(b) PROGRESS IN COMMUNITY INTEGRATION
New Mexico closed its two state developmental disabilities institutions in response to a class action lawsuit decided in 1990, Jackson v. Fort Stanton Hospital and Training School (D.N.M.). The last institutional resident moved to the community in 1998. The remaining persons with developmental disabilities in 2000 were 94 nursing facility residents and 16 residents of a private ICF/MR.706 At the end of 2001, 36 persons lived in New Mexico’s state psychiatric institution at Las Vegas.707 With 6,364 nursing facility residents, New Mexico is in the mid-rank of the states in nursing facility use when expressed as a percentage of the total population age 65 and older; it ranks 11th among the states in the percentage of increase in the number of nursing facility residents from 1996 to 2001,708 and, not surprisingly, Medicaid spending on nursing facilities increased by 38 percent during that period.709 However, the number of beds remained steady.710
(c) SYSTEMS CHANGE ACTIVITIES
The Human Services Department is developing a “global funding” Section 1115 waiver request to CMS.711 According to the Legislative Finance Committee, the waiver will “further diminish, if not eliminate, Medicaid’s bias for providing long-term care services in institutional settings [and] ensure that long-term care services are provided in an integrated setting that meets the tenets of the Olmstead decision and the Americans with Disabilities Act.”712 Under the global funding waiver, Medicaid reimbursement no longer will be tied to nursing facility beds or waiver slots, but will be attached to the consumer. Consumers of long-term care services will be able to move from one setting to another without having to go on a waiting list.713
The waiver will enable the state to finance long-term care services using funds currently identified for Medicaid nursing facilities and home-based care services. Long-term care consumers will have access to preferred home- and community-based services, such as case management, nursing, assisted living, adult day care, therapies, in-home respite, emergency response, environmental modifications, home-delivered meals, personal care, family counseling, behavioral support, independent skills training, supported employment training, community reintegration support, and nursing facility services. The department anticipated that more long-term care consumers will be provided services because of the greater cost-effectiveness of home- and community-based services: $39,000 annually for nursing facility services compared with $17,000 for home- and community-based services.714
In 2001, the Legislative Finance Committee convened hearings to address the costs and benefits of the administration’s newly proposed long-term care global Medicaid waiver. The following concerns were expressed:
Because of the administration’s proposal to cap funds, the program could increase the waiting list for community-based long-term care services and make the state vulnerable to future lawsuits.
New Mexico will not have sufficient services or protection for individuals who choose nursing home placement without sufficient new resources and additional home- and community-based provider development.
Neither the Department of Health Licensing and Certification Bureau nor the State Long-Term Care Ombudsman Program have sufficient oversight authority or staff to conduct surveys and additional provider visits.
New Mexico does not have adequate resources to accommodate even a minimal influx of people into community-based services.
New Mexico has serious resource limitations, including a lack of properly trained skilled and unskilled staff, a lack of paraprofessionals, and inadequate respite care for family caregivers.715
Many of these obstacles appear to be a product of the long-standing direction of long-term care spending to nursing facilities. New Mexico’s proposal to move to global funding appears to be a very promising approach, and it will be instructive to see its results.
Coupled with the Department of Health’s disinterest in Olmstead planning is a much stronger interest in Medicaid reform, which appears to be driven by funding shortfalls and concern that the Medicaid program could face bankruptcy within a generation.716 A Medicaid Reform Committee co-chaired by the same state senator who sponsored the Olmsteadplanning resolution began meeting in April 2002. Although the first meeting began with a proposal by the Medical Assistance Division to significantly reduce personal care services,717 the advocate representatives effectively focused the rest of the Committee on the relationship between investment in community services and overall cost saving.718 In August 2002, a Committee work group on Reconfiguring the Long-term Care Delivery System found that “New Mexico already has an underdeveloped LTC delivery system” and recommended that “increased efficiency, rather than cuts, be the focus of reform as this could lead to lower costs in the long run.” The group recommended considering the options of expanding the Program of All-Inclusive Care for the Elderly (PACE); supporting family care giving; reducing or eliminating the institutional bias in publicly funded care programs; increasing community-based programs; expanding self-directed care options; expanding public transportation and housing availability; investing in recruitment and retention programs for home health care providers; and setting a time frame for submission of the 1115 global funding waiver.719
The committee concluded that it needed more data, and more accurate data, on the cost of various long-term care services, the numbers of people using those services, how resources are being used, and staff retention.720
- NORTH CAROLINA
In fall 2000, the North Carolina Department of Health and Human Services (NCHHS) began to develop an Olmstead plan by conducting four public meetings throughout the state at which participants were asked to discuss (1) how to identify people who could be supported in home- or community-based settings; (2) the services needed to support people in the community; (3) the regulatory or bureaucratic barriers that prevent or hinder community placement; and (4) the quality, monitoring, and reporting systems needed to oversee community services. About 900 people with disabilities, older adults, family members, professionals, and providers attended the meetings. After the meetings, HHS published an interim plan, Serving Persons with Disabilities in Appropriate Settings, on December 28, 2000.721 A final plan has not yet been issued.722
Concurrently, NCHHS engaged in another planning process to reform long-term care in North Carolina, published an initial report at about the same time as the Olmstead plan,723 and, a year later, submitted State Plan 2001: Blueprint for Change to the Legislative Oversight Committee on Mental Health, Developmental Disabilities and Substance Abuse Services.724Although the two planning processes were not formally integrated, goals for Olmstead implementation have been integrated into the State Strategic Business Plan for implementing Blueprint for Change.725 In January 2002, the assistant secretary of the Department for Long Term Care and Family Services was formally designated as the person responsible for long-term care planning, including Olmstead planning. The assistant secretary chairs a Long Term Care Cabinet, which includes the secretary, deputy secretary, and the directors of all divisions whose work affects long-term care services.726
The core of North Carolina’s draft Olmstead plan is a process for identifying current institutional residents for potential community placement. Once they are identified, an individualized plan will be developed for each individual. The Office of Long Term Care will use the information generated by the individual planning process and an inventory of local resources to identify potential services gaps and specify the community services that need to be expanded. Service expansion will be addressed in the local plans to be developed by local entities as contemplated by the Blueprint for Change plan.727
The process for identifying institutional residents for community placement in the North Carolina plan is thoroughly inconsistent with Olmstead and with North Carolina’s own extensive experience with implementation of a pre-Olmsteadclass action suit brought by persons with developmental disabilities who were institutionalized in state psychiatric facilities, Thomas S. v. Flaherty,728 in which the court of appeals affirmed an order to the state to implement the community placement recommendations made by individual residents’ teams. Thomas S. was brought under the Fourteenth Amendment, not the Americans with Disabilities Act or Section 504 of the Rehabilitation Act; however, the court held that institutionalized persons with disabilities were entitled to services consistent with professional judgment. Where continued institutionalization was inconsistent with professional judgment, the individual was entitled to receive services in the community. In the course of Thomas S. implementation, the state arranged for independent evaluators to conduct comprehensive assessments of institutional residents to determine the services needed to remedy years of inappropriate institutionalization.729
In the assessment process developed by the Olmstead planners, institutionalized persons with developmental disabilities and nursing facility residents will first be asked whether the person “wishes to be considered for assessment for transition back into the community.” Only after expressing a preference for community placement will the person be assessed. Only for persons with mental illness who are currently institutionalized or at risk of institutionalization will the entire population be assessed.730
For people with developmental disabilities, the state will conduct assessments of institutionalized persons in state mental retardation centers and private ICFs/MR “who have expressed a desire to live in a more integrated community setting and those parent/guardians and habilitation teams support this move.”731 In other words, only those persons who have affirmatively stated that they wish to move to the community and whose parents or guardians support the move will be assessed for community placement. This is inconsistent with Olmstead and with the post-Olmstead case law that requires only that the person not oppose community placement and that does not support delegating the decision whether to oppose community placement to parents and guardians.732
Similarly, for persons in nursing facilities, the state proposed to develop a brochure called Going Home that outlines the community services available to persons who choose to leave the institution. The brochure will be distributed through long-term care Ombudsmen and Nursing Home Community Advisory Committee members who will visit nursing facilities and talk with residents who have expressed an interest in living in their own homes and communities. Once a resident expresses a “clear desire to be assessed for transfer into a more integrated setting,” the ombudsman or advisory committee member will notify the nursing facility social worker who will be responsible for making a referral to the regional Division of Vocational Rehabilitation Independent Living Office, which will then evaluate the resident “to determine if the person is an appropriate candidate for transition.”733 Again, this process places far too heavy a burden on individual nursing facility residents to make their preference for community placement known to ombudsmen and committee members, whose visits may be too sporadic and controlled by facility staff to effectively identify people who are interested in moving. Obligating a person with significant disabilities to express a “clear desire” for community placement is unrealistic and at the opposite pole from the Olmstead ”not opposed by the affected individual” standard.
The state engaged staff from the Center for the Study of Development and Learning of the University of North Carolina at Chapel Hill to interview residents to determine their preferences for community placement or continued institutionalization. By September 2002, data from the interviews, called Client Preference Interviews, were to be compiled, analyzed, and shared with the state.734 As might have been predicted, the number of persons who have asked to be considered for assessment is relatively small. UNC staff reported that in its initial interviews of residents of mental retardation centers and psychiatric hospitals, about half the residents said they wanted to leave, whereas a fourth said they would like to stay in their respective institutions and another fourth said they were “conflicted.” The evaluators reported that “in many cases, what an individual wants does not match with what a guardian thinks an individual wants.”735
More recent results of the Client Preference Interviews reveal the barriers to community placement presented by the “clear desire” standard, especially for persons with developmental disabilities. Of 1,786 persons interviewed in mental retardation centers, only between 5 percent and 8 percent expressed a “clear desire” to return to the community. The percentage of residents of mental health facilities who expressed a clear desire to return ranged from 17 percent at the North Carolina Special Care Center to 70 percent at Dix Hospital (an institution originally slated for closure in 2002).736
According to the state’s timetable for Olmstead implementation, it should now have consistent procedures for identifying and prioritizing institutional residents for discharge. By April 1, 2003, the state plans to have “out-placement teams” in each state institution, and by July 1, 2003, it plans to have a mechanism for tracking individuals leaving state institutions to ensure continuity of care. By July 1, 2007, it is expected that the number of certified beds in all state-operated facilities will have been reduced to “target levels.”737
The financing mechanisms originally contemplated for Olmstead implementation were creative and promising. The Division of Mental Health, Developmental Disabilities and Substance Abuse Services (MH/DD/SAS) planned to provide “bridge financing” for people leaving the institution for the community through two mechanisms: a MH/DD/SAS Trust Fund and Realignment/Community Capacity Reinvestment. The Trust Fund is a fund designated by the legislature for start-up and short-term operational costs of developing community services, housing, rental deposits, equipment purchases, and other resources for people leaving institutions in the interim before savings are realized through realignment of institutional resources. Realignment/Community Capacity Reinvestment means simply that as individuals leave state institutions, the financing of their community services will come directly from the planned redirection of the resources that become available as a result of closing institutional beds.738
In the 2001-2002 budget, the legislature, in S.B. 1005, set aside $47.5 million for the Trust Fund and stated that one of the purposes of the fund was to facilitate the state’s compliance with Olmstead. However, because of the state budget crisis, the governor by executive action placed $37.5 million from the Trust Fund in escrow, leaving only $12 million available for bridge funding. The MH/DD/SAS developed a scaled-down utilization plan for Trust Fund resources, which, as finally approved, provided funding to develop community resources for people leaving a children’s mental health facility and a psychiatric hospital unit slated for closure; funding to support transition of people from state mental retardation institutions to the community; funding for transition planning; and, in an especially promising use of bridge funding, $3.6 million to leverage the development of community housing for people with mental illness or other disabilities. The MH/DD/SAS reported that it has designated a planning team to work with the private sector to develop housing leverage plans.739 Not all the resources from the Trust Fund were used to develop community services, however; some were set aside for the development of specialized services at the institutions.740
In 2002, the Senate set aside $50 million for the Trust Fund. A budget amendment provided that all proceeds from the sale of the Central North Carolina School for the Deaf would be deposited in the Trust Fund.741
(b) PROGRESS IN COMMUNITY INTEGRATION
North Carolina’s institutional populations are large, and during the past 10 years they have decreased very slowly or grown. Despite Thomas S. implementation, North Carolina still houses almost 3,000 persons with developmental disabilities in large congregate settings, primarily state institutions; since 1990, an average of only 57 persons a year have moved to the community.742 If the state continues to use its present method for identifying persons for community placement, this pattern is unlikely to change. In addition, North Carolina has a large waiting list for developmental disability services-more than 6,000 persons in 1999.743
At the end of 2001, 626 of approximately 3,500 persons institutionalized in state psychiatric facilities had been there for more than a year.744 With 37,106 nursing facility residents in 2001, North Carolina was in the middle rank of states in nursing facility use, measured as a proportion of the state’s overall population age 65 and older. From 1996 to 2001, however, nursing facility beds increased by 7.6 percent, the ninth largest increase in the nation during that period, and the number of residents also grew, though by only 1.6 percent.745
(c) SYSTEM CHANGE ACTIVITIES
The NCHHS plan for reforming the long-term Blueprint for Change calls for reorganizing the department from its present divisional model of “essentially freestanding, single-disability silos” that operate independently of one another to a cross-disability framework that is intended to foster the development of common approaches to similar issues. The Area Agencies that currently provide services will be reorganized into Local Management Entities (LMEs) that will develop local business plans for development of services and manage a network of providers. To receive public funds, the provider must be a member of the network. Access to the reformed system at the local level will be through a “uniform portal.”746Although implementation of the new system has barely begun, it is a promising design that has the potential to enhance and integrate planning and development of community services at the local level and divert persons of all disabilities from institutions.
- NORTH DAKOTA
(a) THE PLANNING PROCESS
After HHS issued its first letter to state Medicaid directors, the director of the North Dakota Department of Human Services (DHS) appointed an internal work group to review the Olmstead decision and recommend further action. The group was composed of representatives of the Divisions of Aging Services, Children and Family Services, Disability Services-Developmental Disabilities Unit, Mental Health Services, the state Developmental Center, the state psychiatric hospital, the regional human service directors, and the Legal Advisory Unit. People with disabilities and advocates were not included in the work group. In August 2000, the group held four regional information meetings with consumers, families, advocates, and providers via teleconference to elicit their input. Following the information meetings, a broad coalition of disability organizations, including People First of North Dakota, the Mental Health Association, the AARP, three North Dakota CILs, The Arc, and the state Protection and Advocacy agency, urged the North Dakota DHS to develop an effective plan with full participation of stakeholders with disabilities.747 The coalition of advocates established their own Olmstead Workgroup to demonstrate a unified position on Olmstead implementation.748
On November 6, 2000, the work group issued a White Paper, which was not intended to be a plan but an analysis of the issues and a brief set of recommendations for further action.749 Its recommendations included the development of a comprehensive state plan by a commission appointed by the governor and composed of representatives from the governor’s office, legislators, family members, consumers, advocates, providers, and state agency directors. The work group also recommended that DHS develop a pre-assessment screening process to be completed before a person’s admission to a nursing facility and continue to support the development of alternatives to nursing facilities.
On August 7, 2001, Governor Hoeven issued an executive order establishing an Olmstead Commission “to develop a plan to implement the Olmstead decision by providing appropriate community-based placement for individuals with disabilities, consistent with the needs and available resources of the State.”750 The commission had already received a 36-month planning grant from HHS. The governor asked the commission to submit its report and recommendations in time for the 2003 Legislative Assembly. The executive order required that membership of the commission include representatives of all the disability organizations that had asked to participate in the planning group except People First of North Dakota.751However, when the members of the group finally were appointed in December 2001, the only advocates among the membership were the executive directors of North Dakota Protection and Advocacy, the North Dakota Mental Health Association, and the AARP-North Dakota.752
The executive order also required that a representative of “the public at large” be appointed to the commission. At least three of the persons actually appointed seem to fit this description: a manager from the Altru Health Foundation, a college student, and a schoolteacher.753
In March 2002, the Commission held focus group sessions across the state to collect information on consumers’ perceptions of the obstacles to accessing services, the length of the wait for services, the improvements needs in existing services, and “how an institution is defined.”754 The issues most commonly identified included “funding following the person”; eliminating the institutional bias; recipient liability; increased funding for home and community services; need for a “full continuum” of service levels in housing; lack of foster homes; shortage of housing and lack of funding for home modifications; absence of a single point of entry; lack of data; provider staffing shortages and low wages; and lack of community-based services for elderly persons and persons with mental illness. Transportation was judged inadequate in every community. Asked to define an institution, the participants identified size, restrictions on choice, and lack of community integration as the most common characteristics of an institution.755
(b) PROGRESS IN COMMUNITY INTEGRATION
North Dakota advocates reported at an ILRU training session in November 2001, “The state still does not believe there is a list of people who want to leave institutional settings.”756 That certainly rings true in developmental disabilities. As the result of a lawsuit brought and won by The Arc of North Dakota,757 the number of persons with developmental disabilities institutionalized in state facilities fell dramatically, from more than 1,200 in the 1960s to 149 in 2000, accompanied by an increase in public spending on developmental disability services that was equally dramatic.758 North Dakota was an early leader in the development of supported living services, and today the majority of persons who were placed in the community under the court orders receive services in their own homes or apartments. However, unlike other small states that have closed their developmental disabilities institutions in response to litigation, North Dakota kept the Grafton institution open, and, after the court relinquished jurisdiction in 1990, the pace of deinstitutionalization virtually came to a halt. The population of Grafton has hovered at around 150, the number of persons in nursing facilities has remained steady at around 190, and the number of persons in large private institutions has doubled to 109 in 2000.759 The state’s position is that the role of the developmental center is that of a “safety net” when appropriate community services are not available.760
According to the North Dakota DHS, the average daily census of the North Dakota State Hospital was about 160 in 2000.761 DHS attributes significant decline in the institutional population to a state statute enacted during the 1989-1991 biennium requiring all voluntary admissions to the State Hospital to be prescreened at one of the regional service centers, with the result that more people were diverted to community services, the number of hospital residents fell from 500 to 275, and 7 of 17 units at the hospital were closed. By 1999, two other units, a chemical dependency treatment unit and a geropsychiatric unit, were also closed because of the increased availability of community services.762
About 1,720 children in the child welfare and children’s mental health systems are placed outside their homes in any given year; according to the North Dakota DHS, about 35 percent of these children are placed in residential facilities rather than with families. The average length of stay in these facilities is short, however, ranging from 4.2 to 10.4 months in 2000.763About 35 children and youth are placed in residences out of state.764
During the first half of the 1990s, North Dakota had the nation’s highest percentage of elders placed in nursing facilities, and the state maintained a number of nursing facility beds per thousand persons that was 50 percent higher than the national average. During the first half of the 1990s, Medicaid expenditures on nursing facilities increased by almost 10 percent per year. In response to the pattern of runaway utilization, the legislature, the governor, and the DHS convened a Task Force on Long Term Care Planning that met during the interim between the last three biennial legislative sessions to consider ways to promote alternatives to nursing facility use. By 2000, however, the impact of these efforts was relatively modest: a reduction of 2.7 percent in the number of nursing facility beds, a reduction of 6.3 percent in the number of occupied beds, and a reduction of 11.8 percent in the number of beds occupied by Medicaid beneficiaries.765 Nursing facility expenditures continued to grow, however, and in the 1999-2001 biennium, DHS funds allocated to nursing facilities increased by 18.6 percent, primarily because of salary and benefit compensation for staff and rebasing of the upper payment limits. In the 2001-2003 DHS budget, nursing facility expenditures made up 21.4 percent, whereas home- and community-based services for elders and people with physical disabilities made up only 2.5 percent. Another 11.7 percent was earmarked for community services for people with developmental disabilities.766
(c) SYSTEMS CHANGE ACTIVITIES
In September 2002, North Dakota received a Real Choices Systems Change grant to evaluate and help implement methods of enhancing the effective delivery of home- and community-based services for people with disabilities in urban and rural counties. Of interest is that the grant was obtained by DHS on behalf of the Governor’s Olmstead Commission and will actually be administered by the commission.
The long-term care planning effort to address overuse of nursing facilities referred to above predates the formation of the Governor’s Olmstead Commission. In 2000, the Task Force on Long Term Care recommended that a targeted case management option be implemented to ensure that persons who were eligible for long-term care understood the options available to them before making a final decision about where to receive services. The task force also recommended the establishment of a rent subsidy program and a pre-admission assessment process before admission to a nursing facility.767 A state law enacted in 2001, House Bill 1196, which established a revolving loan fund for long-term care facilities, also authorized DHS to pay incentives of up to $15,000 per bed to nursing facility operators to reduce capacity. By September 2002, the DHS had paid $3.2 million to nursing facilities to eliminate only 265 beds.768
(a) THE PLANNING PROCESS
Ohio’s Olmstead plan is widely regarded as a model for other states. The planning effort began in June 2000, when Governor Taft instructed his Office of Budget and Management to coordinate a review of the state’s services systems with the Departments of Job and Family Services, Mental Health, Mental Retardation and Developmental Disabilities, Health, Aging, and Alcohol and Drug Addiction Services. The resulting plan was published on February 28, 2001. The recommendations in the plan are embedded in a vision of increased consumer self-determination and control and include the following:
- Change the reimbursement system for institutional care designed to slow the growth of institutional costs and allow investment of an additional $145 million in community services.\
- Shift funding to community services by systematically realigning financing, statutes, regulations, local infrastructure, and the support of public agencies.\
- Work with the National Governor’s Association and other national organizations to overcome federal policy constraints.\
- Address the health care workforce shortage by adopting “best practices” to increase job satisfaction.\
- Remove policy barriers in Ohio that inhibit people with disabilities from achieving independence and personal responsibility.769
The Ohio plan addresses most of the components of Olmstead planning recommended by HHS. It identifies, although in broad and general terms, the numbers of persons in institutions (except for nursing facilities) and waiting for services and considers the extent to which existing programs can serve as a framework for developing services and the level of agreement among stakeholders.770 The plan identifies strategies for system change that will enable more people with disabilities to be supported in the community and recommends changes that will enable people with disabilities to exercise informed choice.771
Some of the consumer input into development of the plan came from preexisting committees in the various departments: the MR/DD Vision Committee, the Department of Mental Health Building Our Future Together initiative, and the Department of Aging Summit on Health Care Workforce Shortage.772 In addition, the Department of Job and Family Services, the Department of Aging, and the Ohio State Independent Living Council organized 10 forums across the state to gather input.773 The plan addresses needed improvements in data systems774 and the challenges the system poses to serving people in the most integrated setting.775 It acknowledges candidly that the support people with disabilities need to live in the community is frequently not available and that entire state systems must be redesigned to improve the adequacy and availability of support.776 It addresses the needs of people who are at risk of unjustified institutionalization because of lack of support in the community, including those with and without informal caregivers, and examines the services that will enable them to move from waiting lists.777 The plan looks critically at the effectiveness of the current system and the real-world outcomes of current supports and services.778
The plan looks squarely at funding. It includes specific provisions in the Governor’s Executive Budget for 2002-2003 to expand home- and community-based waiver programs, including 2,300 new waiver slots in FY 2002; 2,600 new waiver slots in FY 2003 for elders, persons with physical disabilities, and persons with developmental disabilities; and funding for transition costs to enable 75 persons to leave nursing facilities in 2002 and 125 in 2003. It calls for development of a managed care waiver for persons with mental illness. Of great interest are the measures in the Governor’s Budget designed to reduce spending on nursing facilities and remove incentives to building more nursing facility beds, including setting separate rates for Medicaid- and Medicare-supported residents; changing the reimbursement formula to one that divides nursing facility rates by all beds rather than basing the rate on occupied beds; abandoning the payment of bonuses to for-profit providers on the basis of the value of their assets; abandoning the practice of bailing out bankrupt facilities; and limiting reimbursement for depreciation. Even with these changes, nursing facility expenditures would still increase because of automatic increases of 9.6 percent and 7.5 percent in FY 2002 and 2003, respectively, that are guaranteed by state law.779 The plan does not address how this requirement, which resulted in an automatic increase in nursing facility spending of more than half a billion dollars in FY 2002 and 2003,780 will be changed.
Despite its strengths, the plan does not address the pace of transition from institutions to the community or off waiting lists, does not set timelines for movement, and does not look at the adequacy of the state’s current system of assessing institutional residents for community placement (and refers to the results of assessments only for persons with mental illness), nor does it ensure that the state will respond to assessment findings in a timely manner. Although the plan speaks the language of consumer direction and control, it stops short of calling for system change that will enable funding to follow the person.
(b) PROGRESS IN COMMUNITY INTEGRATION
Ohio’s institutional populations are some of the largest in the nation. In 2000, nearly 8,000 persons with developmental disabilities live in large congregate facilities, including 2,430 persons in nursing facilities, 1,990 in state institutions, and 3,374 in large private ICFs/MR.781 Of the 412 persons in state psychiatric institutions who had been there for more than a year,782 the Ohio Access plan reports that preliminary assessments show that more than 100 could be served in community settings if proper support were made available. In addition, about 300 persons with mental illness living in adult care facilities could be served in a community-based setting if intensive services and housing support were available.783The plan concluded that services for people with mental illness were seriously deficient and that about 3,700 persons, or one-third of the consumers of community mental health services, were not receiving adequate services on the basis of frequency of hospitalization and crisis episodes.784 In 2001, 80,930 Ohioans lived in nursing facilities, a decrease of 2.6 percent since 1996, but still enough to make Ohio the ninth state in the nation in nursing facility use when measured as a percentage of the total population age 65 or older. During this period, however, Ohio reduced the supply of nursing facility beds by 12 percent, one of the largest rates of decrease in the nation.785
(c) SYSTEMS CHANGE ACTIVITIES
Most of the real work of implementation of the Ohio Access plan has occurred in the MR/DD Medicaid Redesign Project. Although redesign of MR/DD services was one of the recommendations of the Ohio Access plan, the impetus for MR/DD system redesign came not from Olmstead, but from a review by CMS of Ohio’s Residential Facility Waiver, and the redesign project predated and developed more or less independently of the Olmstead planning project. The review found that Ohio’s MR/DD service system did not comply with the Medicaid requirements of freedom of choice of provider, comparability of services, and being sufficiently statewide.786 Faced with a lack of new funding to support the necessary changes, state officials took on the challenge of serious, systemic change in the structure and financing of Ohio’s MR/DD services. A budget bill enacted in 2001 outlined the framework for systems change and established an Executive Branch Committee (EBC) to oversee the redesign consisting of representatives of the governor’s office, the Department of Job and Family Services, the Department of MR/DD, the Office of Budget and Management, The Arc of Ohio, the Ohio Association of County Boards of MR/DD, Ohio Superintendents of the County Boards of MR/DD, provider representatives, and a representative of persons with MR/DD.787
The basic strategy outlined by the bill was, first, to quickly free up funds by refinancing services that were funded 100 percent by local dollars to capture the federal Medicaid match. To do this, the state submitted a low-cost “basic” waiver with a cap of $5,000 per person to provide federal matching funds for people living at home with their families. It also expanded its Individual Options waiver, which complied with Medicaid requirements, to serve persons who were receiving state-funded supported living services. The freed-up funds were to be used for infrastructure, additional federal match, and expansion of services. After six months of “frontloading,” people enrolled in the Residential Facility Waiver and people in waiting list priority categories would transition to a series of new or amended waivers that would comply with Medicaid requirements. Each waiver would contain an individual cost cap on services so that persons with different levels of need would be served in different waivers (for example, the “cap” in the Basic waiver would be one dollar less than the “floor” in the Individual Options waiver), with provision for easy transition between waivers for persons whose needs might change. County boards that financed MR/DD services with local funds would be designated as Medicaid local administrative authorities with responsibility to ensure that Medicaid requirements, including choice of provider, are met.788 Conversion to the new system began in July 2002 and is expected to take about a year.789
As part of the redesign project, more than a dozen work groups with stakeholder representation were established with specialized tasks in different aspects of implementation. In March 2002, the director of the Department of MR/DD acknowledged that the relationship between the work groups and the department staff had been problematic: “As valuable as the work group process has been, we all acknowledge that the connection between policymaking and implementation needs to be strengthened.” The relationship between the work groups and the EBC established in House Bill 94 has not been simple to manage. Members of the EBC had worked together intensively on crafting the provisions of this omnibus legislation and therefore had a rich understanding of what was intended and why. One result was that the EBC was not totally satisfied with some of the approaches the work groups took, resulting in substantial revision of work products. Naturally enough, staff and the outside parties who donated their time and energies to the work groups expressed frustration over the process.790
The EBC’s resolution of the problem was to centralize responsibility for policymaking in its own subcommittees. The existing work groups’ role was reduced to carrying out specific assignments that might be made from time to time by an Executive Branch subcommittee.791
Conspicuously absent from the system redesign project is any consideration of how funding might be redirected from MR/DD institutions to community services. The director of the Department of MR/DD testified in May 2002 that the department had begun a pilot project to assist “individuals who have a desire to leave the centers” and move to a home- and community-based setting. In other states, offering community placement only to those persons with developmental disabilities who express a desire to leave the institution has left the overwhelming number of institutional residents behind. It was apparent from the director’s testimony that the state does not intend significant reduction of institutional populations but instead will rely on increasing efficiency to contain costs.792
However, by early 2003, state budget realities and the high cost of services at the state developmental centers-an average annual cost of more than $120,000 per person-led the administration of Governor Bob Taft to propose sufficient community placement of institutional residents to enable the state to close one or two of Ohio’s 12 state-operated developmental disabilities institutions. Governor Taft announced that residents of the institutions to be closed would be given choices about where they want to live, which could include the community or another state institution. However, the administration’s expectation plainly seems to be that most residents of the institutions selected for closure will move to the community.793
The obstacles to reducing spending on nursing facilities in state law have been a particular challenge in Ohio. After the Ohio Access plan was published, a group of disability advocates formed to work with state agencies to seek Systems Change grants from CMS. The Ohio Developmental Disabilities Council and the Statewide Independent Living Council used the group as the beginning of a cross-disability/aging Olmstead Task Force.794 In a meeting with the task force in March 2002, the executive assistant to the governor made clear that other demands on Medicaid funds, including the statutory formula that assigns 42.5 percent of Medicaid funds to nursing facilities and other long-term care facilities, will make it difficult for the state to expand existing Medicaid waivers or add new programs, such as the Medicaid buy-in.795
By summer 2002, some of the measures to reduce incentives for building unneeded nursing facility beds that were proposed by the governor and included in the Ohio Access plan in 2001 were still being considered by a Nursing Facility Reimbursement Council, made up of legislators, agency administrators, and representatives of the nursing facility industry. In a hearing before the council on July 16, 2002, the director of the state Medicaid agency made the case for change, pointing out that 14 percent of nursing facility beds were unoccupied, that the present system increases per diem payments as occupancy falls, and that other aspects of the reimbursement system inflate payments. The legislators expressed concern with downsizing nursing capacity, and one suggested that empty nursing facility beds should be made available to other populations, such as people with developmental disabilities and mental illness.796 An advocate who attended the meeting reported that the governor’s executive assistant pointed out the desirability of having 20 or so members of the Olmstead Task Force in the audience for the hearings.
Ohio has an administrative rule providing that a third of the proceeds from the collection of franchise permit fees and penalties paid by nursing facilities and hospitals are to be deposited in a “home and community-based services for the aged fund” and used to fund programs for Medicaid beneficiaries, including the PASSPORT waiver for persons older than 60 who are at risk of nursing facility placement. However, in an amendment that became effective on September 30, 2002, the percentage of the fees paid into the home- and community-based services fund was reduced to 23 percent for fiscal years 2003 through 2005.797
(a) THE PLANNING PROCESS
In February 2000, the Oklahoma Health Care Authority (OHCA) began a series of public meetings and work group meetings to obtain stakeholders’ views of the service delivery system and identify where “reasonable modifications to existing programs” were needed and could be made. Stakeholders who attended the meetings included the Departments of Human Services/Developmental Services Division, Mental Health and Substance Abuse Services, and Rehabilitation Services; the Oklahoma Brain Injury Association; Tulsa Arc; the UAP; the Oklahoma Developmental Disability Council; the Oklahoma Disability Law Center; and the Oklahoma Nursing Home Association. An OCR representative attended the public meetings.798
According to OHCA, discussions at the meetings led to “reasonable modifications” to the state’s Medicaid program. These changes included an amendment to the state’s Aged/Disabled (“Advantage”) waiver to include services for adults with developmental disabilities without cognitive disabilities, limited by availability of funding; reduction of the waiting list for MR/DD waiver services by 1,039 out of 2,500; expansion of Medicaid coverage of Durable Medical Equipment with the help of Oklahoma’s assistive technology program to provide more comprehensive coverage that meets CMS requirements; increases in the wages of direct support professionals by a little less than $1.50 an hour; and expansion in a transportation system to transport Medicaid recipients to medically necessary services. Despite these changes, as of February 2001, 2,964 Oklahomans were counted on the MR/DD waiting list.799
Following the first two Olmstead public meetings, an Olmstead Work Group began meeting monthly at OHCA. OHCA developed a list of “invitees” in concert with the Developmental Disabilities Council, the Division of Developmental Disabilities Services, and the Aging Services Division. Constituencies added to the group included NAMI, the Chicksaw Nation, the Oklahoma Mental Health Consumer Council, ABLE Tech (the assistive technology program), and an independent living center. The work group divided into five committees to address five of the principles set forth in the HHS letter to state Medicaid directors of January 2000. The groups respectively addressed the state of the current system, transition of qualified persons to community-based settings, assessments to determine how community living is possible, evaluation of the adequacy of current assessments, and persons at risk of institutionalization.800 The subcommittee members did not attempt to determine whether fundamental alteration in existing programs was necessary (or what would constitute a fundamental alteration), nor did they address funding levels or funding strategies.
The Summary Report of the Working Group, even in its fourth draft, is little more than a “plan to plan.” Each of the subcommittees recommended, in essence, that planning continue (or begin in earnest), that relevant data on existing services be collected and analyzed, that people who want to move to community be identified and assessed, that quality assurance systems be developed, that a preplacement screening process be developed, and that incentives for deinstitutionalization be created. One of the subcommittees did recommend that the state contract with independent community-based organizations to identify and assist with the transition of people in institutions who want to live in the community; another recommended that the state set targets for completing assessments of institutional residents, such as 20 percent per month.801 Other recommendations included pursuit of additional waivers for underserved populations, such as people with autism, mental illness, noncognitive disabilities, and brain injury; a true analysis of the costs and benefits of serving people in state institutions as compared with the community; sustained and regular input in policy and planning decisions from consumers and other stakeholders; and creation of a consumer-friendly single entry point.802
But it was clear to the consumers and advocates in the working group that the planning process had progressed as far as it could go without a much more substantial commitment from the state. The working group concluded the following:
[S]tates which have been the most successful in their Olmstead planning are those that have both the support of their executive body and a mandate to all state agencies, not just the Medicaid agency, to fully participate.
Advocates next turned to the legislature. A state senator introduced a bill, S.B. 1512, to create a Strategic Planning Committee on the Olmstead Decision.803 Even before the governor signed the bill on May 30, 2002, most of the stakeholder participants in the working group had been appointed to the new planning committee,804 which includes work groups on The Dollar Follows the Individual, Diversion, Community Supports, Quality Assurance, and Budget and Finance.
(b) PROGRESS IN COMMUNITY INTEGRATION
In the 1980s, Oklahoma was last in the nation in community services for persons with developmental disabilities and was saddled with a network of powerful private institutional providers, the legacy of an era when children entered the state institution at age 6 and were transferred to nursing facilities (some of them later converted to private ICFs/MR) at age 18. A successful lawsuit, Homeward Bound v. The Hissom Memorial Center, led to the closure of one of the state’s three developmental disabilities institutions, the placement of all Hissom residents in the community, and the creation of state-of-the-art community services in the Tulsa area. The population of Oklahoma’s developmental disabilities institutions has continued to decline since Hissom closed in 1994, but the decline has slowed in the past several years. In 2000, many more Oklahomans lived in private ICFs/MR (1,465) and nursing facilities (1,210) than in state institutions (407); moreover, movement from the private facilities slowed in the late 1990s and their population is now increasing again.805
In 2001, Oklahoma’s nursing facility population of 22,640 made it 10th in the nation in nursing facility use when expressed as a percentage of the state’s total population age 65 and older. Although the nursing facility population decreased by 11.5 percent from 1996 to 2001, one of the most significant declines in the nation during that period, decrease in the number of beds was only 2.4 percent, and Medicaid spending on nursing facilities actually increased by 53 percent.806 The population of Oklahoma’s state psychiatric institutions is relatively small in comparison, but about half the population has lived there for more than a year.807
(a) THE PLANNING PROCESS
The strongest impetus for Olmstead planning in Oregon has come from mental health advocates. In 2000, the Mental Health Planning and Management Advisory Council of the Oregon Mental Health and Developmental Disability Services Division and several mental health advocacy organizations urged the division to begin planning for the development of community supports for persons with mental illness who were in institutions or at risk of being institutionalized.808 Initially, administrators in the division were reluctant to commit to the planning process because they had heard from the National Association of State Mental Health Program Directors that a plan would increase the potential for lawsuits.809 On August 10, 2001, the Advisory Council (a group composed largely of consumers and other stakeholders) formally moved that the division permit the planning group to begin planning in earnest,810 secured the consent of the division administrator,811and, on October 25, 2000, the administrator of the division convened work groups (later combined into a single OlmsteadWorkgroup) “to assess the extent to which persons in Oregon’s state hospitals who had been determined to be ready for placement by their Treatment Teams had not yet transitioned to the community and to make recommendations regarding costs, timelines and processes.”812 The charge to the Olmstead Workgroup included preparing a list of persons for whom individualized community discharge plans should be developed; assessing community placement costs and timelines for their discharge; proposing a method for ongoing review of patients for discharge readiness and maintenance of a waiting list with estimated placement costs for each person to be placed; and preparing an Olmstead Plan with timelines for discharge and projection of funding and program development needed for each person.813
On December 19, 2000, as the Olmstead Workgroup was beginning its work, the Oregon Advocacy Center, the state’s protection and advocacy organization, filed an Olmstead lawsuit, Miranda B. v. Kitzhaber814 on behalf of 10 named plaintiffs and a class of approximately 100 residents of state psychiatric hospitals who had been recommended for community placement but remained institutionalized because of the lack of community services. The Olmstead planning process was put on hold for a time because of the lawsuit,815 but evidently resumed after the state filed a motion to dismiss on Eleventh Amendment grounds, which virtually guaranteed that the case would not move forward until the district court had decided the motion and the Court of Appeals for the Ninth Circuit had disposed of an interlocutory appeal.
The complaint in Miranda B. states that people with mental illness are placed at costly private hospitals while awaiting an opening at the state hospital and that, because of a backlog, they frequently are forced to live in medical and surgical units while awaiting placement.816 The court denied the defendants’ motion to dismiss, but the defendants, as might be predicted, filed an interlocutory appeal on the ground of Eleventh Amendment immunity. The appeal is currently pending.817
With Miranda B. on appeal, the work group published a draft plan on August 21, 2001. They found that a total of 70 adults at the two state psychiatric hospitals had been recommended for discharge by their interdisciplinary teams and 48 of them had been waiting to move for at least three months.818 Most of these persons had disabilities in addition to mental illness, including acquired brain injury, developmental disabilities, or histories of substance abuse, trauma, or sexual offending. The work group concluded that even if these persons were able to return to the community eventually, they would be at continued risk of reinstitutionalization because of their multiple and complex needs and the lack of services needed to support them in the community.819
The work group next identified the services needed by the 48 persons recommended for community placement, including residential treatment facilities, adult foster homes, supported housing, supported employment, and case management. Cost projections were developed on the basis of the following scenarios: (1) all-new development of facility-based services; (2) development limited to smaller homes, supported housing, and permanent, affordable housing, together with “judicious use” of vacancies in existing residential treatment programs. The work group recommended the second alternative, but noted that although the second alternative is more cost-effective and consistent with Olmstead, it would require more training of case managers, county residential coordinators, and service providers to work with consumers to develop and carry out more individualized plans in integrated residential settings.820 Cost projections for the recommended alternative included rent subsidy funds to enable consumers to afford housing until Section 8 vouchers become available.821 The work group analyzed the process for transitioning consumers from the hospitals to community settings and recommended changes aimed at tracking people waiting for placement and the length of time they remained waiting and ensuring that people recommended for placement actually do move to the community.822
Finally, the work group made 38 specific recommendations, of which the following are some of the most significant:
- Develop a comprehensive, effectively working plan to provide services to people of any age with psychiatric disabilities in more integrated, community-based settings.\
- Increase consumer and stakeholder participation on the work group.\
- Use the County Biennial Plans to identify programs and providers interested in developing additional resources.\
- Review Medicaid and other funding sources to identify potential sources of additional funds.\
- Give priority to developing smaller, more community-integrated residential settings.\
- Implement specific changes in the transition process to focus on identifying and developing the services needed for persons with more complex needs who are difficult to place.\
- Train providers and service coordinators in person-centered planning, cultural values, choice, and self-determination.\
- Develop additional peer-operated programs and support self-advocacy.\
- Seek funding to develop support brokerage agencies to assist consumers to recruit, supervise, and manage their own Personal Care Attendant services.
Of note is the work group recommendation that “[s]pecial transition work should be done with [Recommended for Placement] individuals who refuse all placements or show a special fear of leaving the state hospital” because the work group recognizes that the right to community living is not limited to people who affirmatively request community placement but should be extended to anyone who does not oppose community placement.823
In 2002, the work group report was approved and adopted by the division. Despite its limitation to persons with mental illness and the small number of persons who may ultimately benefit from community integration under the plan, the OregonOlmstead Workgroup’s report is a model Olmstead plan in many significant respects. It identifies the people recommended for placement with specificity and the services they will need in the community, examines the adequacy of the discharge process, considers the adequacy of existing services and the changes needed to make those services responsive to the needs of consumers, and projects the costs that will be associated with transition.
Concurrent with the work of the Olmstead Workgroup, a much more comprehensive effort to develop a blueprint for redesign of Oregon’s mental health system was carried out by a task force appointed by Governor Kitzhaber in January 2000, the Mental Health Alignment Work Group. The impetus for the formation of the Alignment Work Group was the recognition of the “hydraulic” impact of lack of adequate mental illness services on all parts of the human resource, education, and workforce systems, as manifested by the high percentage (ranging from 40 to 75 percent) of clients of various state agencies with untreated mental illness, together with the acknowledgment that lack of access to services was compounded by fragmentation and the lack of a real mental health system.824
Membership of the Alignment Work Group was extremely broad and included representation from the governor’s office; the Departments of Education, Corrections, Human Services, Housing and Community Services, Justice, and Budget and Management; the Oregon Youth Authority; the Oregon Commission on Youth and Families; the Oregon Disabilities Commission; the Association of Oregon Counties; the Oregon State Police; the Sheriffs’ Association; consumers and families; legislators; judges; community providers; local school districts; physicians; psychiatrists; local mental health directors; tribal governments; and housing providers, with some overlap with the membership of theOlmstead Work Group.825 The Alignment Work Group met two or three days a month from February through December 2002, and in January 2001 published a report that included the following recommendations:
Develop local biennial blueprint plans for multisystem teams to coordinate and deliver services for children, families, and adults.
Establish equal benefits for mental health and physical health (parity).
Provide public mental health funds through a block grant and encourage the local Mental Health Authority to enter into “blended funding” agreements with state and providers.
Address the connection between law enforcement and mental health by collaboration between local Mental Health Authorities, Public Safety Coordinating Councils, Corrections, and the Oregon Youth Authority and incorporate the results of this collaboration in local blueprint plans.
Create a seamless data system using an “information system guidance committee.”
Simplify Oregon Health Plan enrollment process and eliminate periods of noncoverage.
Conduct a study and analysis of the needs of the mental health workforce.
Delineate workforce needs and responsibilities and train accordingly.
Form a consortium of public and private groups to provide public education.
Change state agency administrative functions to support local service delivery.
Establish an independent ombudsperson.826
The Alignment Work Group also recommended the funds in a housing trust created in 1999 from the proceeds of the sale of a state psychiatric facility (Dammasch State Hospital) be transferred to the Oregon Housing and Community Services Department to leverage and grow.827
After the report was submitted, the state legislature passed a bill, S.B. 411,828 requiring the Mental Health and Developmental Disability Services Division to develop “a comprehensive, long-term plan for providing appropriate and adequate mental health treatment and services to children and adults.” The plan is to be based on needs identified in biennial plans submitted by community mental health and developmental disabilities programs and must be consistent with the findings of the January 2001 report of the Mental Health Alignment Work Group. The new legislation also requires the division to work with consumers, families, providers, advocates, and schools in developing the plan and requires that the plan include an analysis of the budgetary and programmatic effects of implementing the plan. The plan is to be completed by February 1, 2003.829
It is interesting that although the Alignment Work Group’s lengthy report never even mentions Olmstead, the director of the Office of Mental Health Services characterized S.B. 144 as “an attempt to respond to the Supreme Court decision on theOlmstead lawsuit.”830 Apparently, S.B. 144 originally focused more on “individualized Olmstead planning” but was revised to be consistent with the recommendations of the Mental Health Alignment Work Group.831
A third planning effort, the Governor’s Task Force on the Future of Services to Seniors and People with Disabilities, developed independent of the two work groups in mental health and was created by executive order in June 2001.832 It is composed of members of the Legislative Assembly and representatives of the Commission on Senior Services, the Disabilities Commission, the Association of Area Agencies on Aging and Disability, the Housing and Community Services Department, the Department of Human Services, the Governor’s Office, consumers, advocates, long-term care providers, home care providers, physicians, and a representative of the financial services industry. Its purpose was to develop a long range plan for services to elders and people with disabilities that would address cost containment, development of needed long-term care services, development of long-term care financial planning, identification of housing needs, modernization of deteriorating long-term care facilities, and workforce development.833
The recommendations of the Task Force on the Future of Seniors and People with Disabilities were finalized at a task force meeting on August 7, 2002.834 The focus of the plan is on cost containment (for example, by promoting the use of private alternatives to funding long-term care insurance), prevention and amelioration of disability, and overcoming transportation and housing barriers that force elders and people with disabilities to choose more costly out-of-home placements. The report does not mention Olmstead, nor do the recommendations address unnecessary institutionalization, methods for identifying people who could move from institutional long-term care facilities to the community or desire to do so, or the creation and funding of community services for people who wish to leave institutions.835 The closest the report comes to addressing unnecessary institutionalization is in its recommendation that “All aging and disabled Oregonians shall have a variety of community housing options available ranging from remaining in their own homes to living in long-term care facilities.”836 Nevertheless, most of the recommendations are quite compatible with Olmstead, and the recommendations in the areas of housing and transportation are sound and occasionally creative (for example, changes in land use requirements to permit accessory housing in single-family residential areas to enable elders and people with disabilities to receive care from their families with as little disruption to family life as possible).837
According to Oregon advocates who attended an ILRU Olmstead training on August 14, 2001, a recent waiver audit identified inappropriate placements of people with disabilities in nursing facilities.838 However, none of the three reports and plans discussed above addressed how this problem will be resolved.
While the state’s planning processes were unfolding, Oregon advocates formed an Olmstead Work Group as a subcommittee composed of representative members of an emerging cross-disability coalition. Some overlap existed in the membership of the Olmstead Work Group and the state’s two mental health work groups discussed above, but the advocates seemed quite isolated from the Seniors and People with Disabilities Task Force.839 At an initial meeting, the group discussed whether its focus should be “to push the state to produce an Olmstead plan, or rather to advocate for policy and services that are in concert with the intent of Olmstead.”840 In essence, the group decided to pursue both strategies.841 In a subsequent action plan, the group resolved to work to integrate Olmstead principles and language into policy advocacy initiatives.842 The group obtained a grant from the Department of Human Services to fund start-up costs of the cross-disability coalition and for two specific projects: a study of the numbers of people in institutions in Oregon and two training sessions on Olmstead via distance learning.843
The study of institutional residents was carried out by a contractor of the Oregon Developmental Disabilities Council and published in May 2002;844 the distance learning sessions were held in early 2002 at a large number of downlink sites.845At this writing, the Olmstead Work Group continues to meet.
(b) PROGRESS IN COMMUNITY INTEGRATION
By the time of the Olmstead decision, Oregon already had made significant progress in reducing institutional populations. After the closure of the Fairview Training Center in February 2000, about 80 persons with developmental disabilities remained institutionalized at the remaining state institution, the Eastern Oregon Training Center;846 in addition, 180 persons with developmental disabilities were housed in nursing facilities in 2000.847 At the end of 2001, 380 persons institutionalized in Oregon’s two state psychiatric hospitals had been there for more than a year.848 Oregon has been a national leader in reducing nursing home beds and population, by 8 percent and 17.2 percent, respectively, between 1996 and 2001.849 During the same period, however, Medicaid spending on nursing facility services rose an astonishing 229 percent.850 Oregon’s nursing facility population of 9,444 in 2001 ranks it 29th among the states in nursing home use measured as a percentage of the total population age 65 and older.851
(c) SYSTEMS CHANGE ACTIVITIES
Oregon has been a leader in the planned reconfiguration of services to support former institutional residents in the community and reduce waiting lists. In 1997, the Mental Health and Developmental Disability Services Division developed a long-range plan that provided for the planned closure of the Fairview Training Center, at which the annual cost of care had risen to $212,000 in the course of compliance with the court orders in United States of America v. Oregon, a case brought by the United States Department of Justice in the 1980s.852 The plan provided that the funds freed up from the closure of Fairview be reinvested in community services and projected that even after the costs of providing all Fairview residents with community services were subtracted, enough money would remain to offer in-home support to 1,500 persons on waiting lists and to raise the wages of direct support professionals by one dollar an hour.853
Additional support for community services was created by sale of the Fairview property itself. As a result of legislation enacted in 1999, the proceeds from the sale of Fairview and the Dammasch State Hospital were placed in a trust fund to improve community housing opportunities for people with disabilities.854
The legacy of the high cost of compliance with the Fairview court orders was long waiting lists for developmental disability services in the community. In 2000, the Oregon Advocacy Center filed Staley v. Kitzhaber,855 alleging that the state had failed to provide services in the most integrated setting for adults with retardation who were eligible for ICF/MR services. Even before Staley was filed, the legislature had passed S.B. 919,856 directing the Mental Health and Developmental Disabilities Services Division to prepare a plan to provide universal access to services for all Oregonians with developmental disabilities. In February 2000, the state published a Plan for Universal Access, committing itself to provide a “support services” waiver valued at about $400 per month for all persons eligible for developmental disability services to supplement support provided by family and friends and to provide “comprehensive services” valued at about $4,000 a month to meet more extensive needs in in-home or out-of-home settings.857 In September 2000 the parties entered into a settlement in Staley on the basis of the Plan for Universal Access.858
However, in 2002, after a dramatic decline in state revenues, the legislature directed that the “support services” waiver be terminated unless voters passed a referendum to increase state taxes. The referendum was held in January 2003 and did not pass. Under threat of being found in contempt of court, the state has delayed termination of the program (originally scheduled for March 2003).859
In 2000, Oregon received approval from HHS for a Section 1115 waiver to conduct an Independent Choices cash and counseling demonstration project for up to 300 adults eligible for long-term care services. In comparison with the other Cash and Counseling demonstration waivers in Arkansas, Florida, and New Jersey, the Oregon demonstration makes less use of fiscal intermediary intervention. A monthly service allocation is paid directly into a consumer’s Independent Choices checking account; the consumer pays providers directly out of this account and deducts the appropriate taxes. However, a payroll service is available to people who need assistance. The waiver also allows payments to spouses.860 Consumers receive training in managing employees and payroll, conducted by Centers for Independent Living and Senior Service Centers, before participating in the waiver. They must pass an exam to be eligible to conduct payroll tasks; if they or a designated surrogate does not pass the exam, they use a fiscal intermediary. The CILs and Senior Centers provide up to six hours of technical assistance a year to each consumer on request.861
Oregon received a Real Choice Systems Change grant in 2001 with a particular focus on persons with mental illness, designed to promote consumer direction and increase community capacity.862 The grant supports a pilot project in one Oregon county of a consumer-directed brokerage model for people with mental illness: an independent organization that employs or contracts with person agents to assist consumers to define their personal goals, access community resources to achieve those goals through networking and community development, and manage the financial administration, contracting, and paperwork required to pay for individual support.863 The grant also provides funds for the development of drop-in centers, supports cross-disability events and conferences, and supports change in the individual planning used by the mental health system to a person-centered model.864
(a) THE PLANNING PROCESS
On March 21, 2000, 16 advocacy organizations joined in a letter to the secretary of the Department of Public Welfare urging her to develop and implement an Olmstead plan to provide effective community-based services to people remaining in state developmental disabilities institutions; to continue planning for community mental illness services with additional input from consumers and family members; and to convene a nursing facility planning process with significant, diverse consumer involvement. The signatories were an unusually broad coalition of disability and elders’ organizations, including The Arc, the UAP, the Mental Health Association, NAMI, the Multiple Sclerosis Association, the Statewide Independent Living Council, the Coalition of AIDS Services Organizations, Speaking for Ourselves (Pennsylvania’s People First organization), the Spina Bifida Coalition, the Center for Advocacy for the Rights and Interests of the Elderly, and Pennsylvania Protection and Advocacy. Advocates convened a meeting in April 2000 to discuss how the process for developing community services for nursing facility residents should proceed.865 According to advocates in Pennsylvania, the request was ignored, and no Olmstead planning has occurred in Pennsylvania.
(b) PROGRESS IN COMMUNITY INTEGRATION
Historically, large numbers of persons with disabilities have been institutionalized in Pennsylvania, and despite the success of litigation and other advocacy strategies to create community living opportunities for institutionalized persons, the state’s institutional populations remain very high. In 2000, 1,969 persons with developmental disabilities lived in state institutions, another 2,350 were housed in nursing facilities, and 1,869 were institutionalized in large private ICFs/MR.866 The population in congregate facilities for persons with developmental disabilities decreased by about 33 percent between 1992 and 2000-it is difficult to calculate a percentage decrease over a longer period because the number of persons with developmental disabilities in nursing facilities was not accounted for until 1992. Most of the decrease came from people living in state institutions, whose population fell by 48 percent during this period. Two successful lawsuits, Richard C. v. Houstoun867 and Nelson v. Snider,868 and vigorous advocacy for planned deinstitutionalization contributed to this result. However, movement to the community from nursing facilities and large private ICFs/MR proceeded at a much slower pace: On the average, only 72 persons left nursing facilities each year between 1992 and 2000, and only 28 left large ICFs/MR each year.869
In 1997, the Pennsylvania Office of Mental Retardation published a plan developed by its Planning Advisory Committee, a stakeholder group co-chaired by the director of the Protection and Advocacy system, and the director of a service provider agency that would have reduced the population of state institutions from 2,600 to 1,500 and the population of large private ICFs/MR by another 400 persons by the end of FY 2002.870 Although significant reduction in the population of state institutions did occur, the overall deinstitutionalization targets of the plan were not met, and even the Governor’s Budget for 2001-02 provided funding for only 150 people to leave state developmental disabilities institutions in that year instead of the promised 200.871 Moreover, the initiative has not been continued in the 2002-03 budget now that the original five-year period has ended. Pennsylvania’s large private ICFs/MR are operated by politically powerful providers, are defended by residents’ families, and serve many out-of-state residents. Advocating successfully for the right to community living of the 1,800 people in these facilities has always been a challenge for Pennsylvania advocates and is likely to remain so in the near future.
In the late 1990s, after newly compiled data revealed that more than 14,000 persons with retardation were waiting for services and that more than 3,500 of these persons were in emergency or critical need of services,872 the Pennsylvania Community Advocacy Coalition, an alliance of organizations committed to community integration of people with developmental disabilities, made ending community waiting lists its first priority. In part this decision was based on the recognition that although deinstitutionalization litigation had resulted in the creation of well-resourced community services for former institutional residents, the needs of persons living at home with their families had been neglected and ignored during the process.
A well-organized advocacy effort by the Pennsylvania Waiting List Campaign was successful in persuading Governor Ridge to launch a five-year, $853 million plan to provide services to persons on waiting lists. However, in 2002, in the budget for the third year of the initiative, faced with a $1.2 billion shortfall in revenue, Governor Schweiker backed away from the commitment and proposed a 30 percent cut in services. The governor’s budget for 2002-03 also contained funding for only 57 persons to move from institutions to the community: 33 from mental health institutions and 24 from the mental retardation system.873 On May 30, 2002, families and advocates filed a lawsuit in federal court, Sabree v. Houstoun, on behalf of people waiting for services.874
Populations of state psychiatric facilities in Pennsylvania are also very large. Although the state claims that state hospital population fell by 53 percent in nine years,875 at the end of 2001, 1,842 residents of those facilities had lived there for more than a year,876 and it was not until 1998-99 that the Pennsylvania Department of Public Welfare spent more for community-based services than for state inpatient hospital services.877 Litigation brought by advocates has focused on obtaining adequate community services and support for former state hospital residents in the community and is widely regarded as successful.878
In addition, the state Protection and Advocacy Association estimates that approximately 1,200 children with mental illness, autism, and other significant medical and behavioral disabilities are segregated in residential treatment facilities licensed by the Office of Children, Youth and Families. In June 2002, the Medical Assistance Advisory Committee passed a resolution urging the state mental health and medical assistance agencies to begin a planning process to develop a system of services for children who without those services will be institutionalized in residential treatment facilities.879
Between 1996 and 2001, the number of nursing facility residents and nursing facility beds declined by 4.2 percent and 1 percent, respectively, whereas Medicaid spending on nursing facility services increased by 63 percent to more than $3.6 billion.880 With 82,971 nursing facility residents in 2001, Pennsylvania is 17th in the nation in nursing facility use when measured as a percentage of the state’s total population age 65 and older.
(c) SYSTEMS CHANGE ACTIVITIES
The Multi-Year Plan for Pennsylvania’s developmental disabilities service system developed in 1997 squarely confronted the disparity in resources between the state institutions and large private ICFs/MR, in which 12 percent of the population is supported with 47 percent of the funds, and the community service system, in which 88 percent of the population is supported with only 53 percent of the funds, recommending the unification of funding systems under a single managing entity and the elimination of categorical allocations. Although this recommendation was not carried out during the original five-year planning period, the Office of Mental Retardation is working toward this goal in a project reportedly modeled on Wyoming’s Doors project. The Pennsylvania version, called the Transformation Project, contains a method of portable funding that is designed to afford consumers more choice and reduce incentives for placement in more costly congregate settings.881
However, the primary impetus for the Transformation Project came from CMS, which in an audit of Pennsylvania’s home- and community-based waiver program found that the program did not comply with the Medicaid choice of provider requirement, 42 U.S.C. § 1396a(a)(23), and also found deficiencies in the state’s actions to ensure the health and safety of waiver recipients. The Transformation Project responds to CMS’s findings by assigning an individual budget to each consumer, called the Individual Estimated Resources (IER), which the person can take to the providers of his or her choice.
Advocates have sharply criticized the IER because as currently designed, it will impose a budget for the person’s services before the person’s individual needs are identified in a comprehensive assessment and plan. They note that the budget process, based on a set of questions based on the “medical model” of disability in which people with similar disabilities will be assigned the same amount of funding, was designed by consultants from Deloitte and Touche who lacked expertise in developmental disabilities and that the process seems designed for people living at home with their families rather than people who may lack such sources of natural support.882 In a letter to the 2002 gubernatorial candidates, a broad coalition of advocacy organizations, including ADAPT, several Independent Living organizations, and the Mental Health Association, pointed out that the project, by arbitrarily limiting funding on the basis of a person’s disability profile based on actual support needs, may jeopardize compliance with waiver health and safety requirements. They noted the lack of input into the project from people with disabilities and their families, the absence of evidence of the project’s feasibility, the likelihood that it will drive small providers out of business, and the fact that it relies on an increased level of responsibility for support coordinators who are unable to perform many of their responsibilities in the current system. The coalition called for a moratorium on implementation of the Transformation Project.883
Pennsylvania’s services for people with physical disabilities, for many years plagued by a shortage of funding for personal assistance services, received significant increases in funding as recently as the 2001-2002 fiscal year,884 in large part because of the efforts of advocates who insisted that the state apply for home- and community-based waivers. Advocates report that waiting lists for personal assistance services have been reduced to such an extent that people who wish to leave nursing facilities are able to do so.
Access to community services as an alternative to nursing facility placement, however, is much more problematic for Pennsylvania’s elders. In 1999, a work group of the Pennsylvania Intra-Governmental Council on Long Term Care produced a plan to shift funding from nursing facilities to services in elders’ homes.885 In early 2000, a bill to implement the work group’s recommendations-the Assisted Living Reform Act-supported by a broad coalition of elders and people with disabilities, including HIV/AIDS, was introduced in the state legislature.886 The bill defined “assisted living” services to include services in a consumer’s home or the home of a family member or friend, as well as services in a licensed assisted living residence or personal care home. (Currently, most services called “assisted living” are provided in personal care boarding homes.)887 The bill would have allowed consumers to choose assisted living services, including cognitive support services, from a full menu of services; established subsidies of housing costs to avoid nursing facility placement where housing subsidy plus assisted living services would cost less than a nursing facility placement, as well as funding for home and environmental modifications in excess of existing waiver caps and low-income housing tax credits and loans to persons who were otherwise ineligible for Medicaid or housing subsidies; and required that public funding for assisted living follow the individual rather than the institution.888 Although the bill was the product of two-and-a-half years of work by the task force, had strong bipartisan support, and was supported by a broad consensus of stakeholders, it died in committee in 2000-2001 and again the following year.
In 2001-02, Pennsylvania expanded home- and community-based care for elders with the aid of funds from the tobacco settlement. The state also operates a Family Caregiver Support program to support families who care for a relative older than 60 with chronic illness or a disability. It is funded from the state’s general fund and provides for about 3,500 families at an average annual cost of $2,900 per family. The program is administered by the Area Agencies on Aging, which reimburse family caregivers directly rather than through provider agencies. In addition to reimbursement for respite care, supplies, and equipment not covered by Medicare and Medicaid, families may receive grants of up to $2,000 for home modifications or purchase of assistive devices.889
However, the state’s long-term care system still contains many barriers to the receipt of home- and community-based services. A March 2002 report by the Home and Community-Based Barriers Elimination Work Group of the Pennsylvania Intra-Governmental Council on Long Term Care identified 22 administrative, informational, and systemic barriers to obtaining home- and community-based services, including a lengthy and complicated process for application, determining eligibility, and arranging for services; the absence of a seamless application process; unavailability of funding for housing; lack of publicly funded options for eligible-waiver consumers needing 24-hour services (under Pennsylvania law, a person who needs a nursing facility level of care cannot live in another type of residential program, such as an assisted living facility, where 24-hour services are available; the person’s only option is to enter a nursing facility); an inadequate workforce to support the needs of consumers who want home- and community-based services; the absence of a coordinated system of quality assurance for all home- and community-based services; narrow eligibility categories in existing waivers; lack of standards and enforcement of standards governing personal care homes that may house waiver residences; lack of public funding for services in assisted living residences; and a Medicaid resource level that is set too low.890
Another barrier is the state’s failure to permit interim presumptive eligibility for home- and community-based waiver services, although this is permitted and encouraged by CMS. Interim presumptive eligibility, which allows a program to admit the individual first and determine eligibility later, is routine for nursing facility applicants, whereas consumers who apply for home- and community-based waiver services must wait as long as four months for eligibility to be determined so they can receive those services.891 The 2002-03 Governor’s Budget proposed to eliminate the home maintenance deduction, which allows a portion of the payment to nursing facilities to be diverted to the cost of maintaining a consumer’s residence during a temporary nursing facility placement. Without the home maintenance deduction, some consumers will be unable to maintain their homes, thus increasingly the likelihood that the nursing facility stay will become long term.892
The Pennsylvania Intra-Governmental Council on Long Term Care, which includes wide representation from elders, people with disabilities, providers, unions, and other stakeholders, has consistently made constructive recommendations to overcome the barriers to community integration in the service delivery system for elders. However, many of its recommendations for systemic change have not been adopted; advocates point to the fact that the council is housed in the Department of Aging and that its recommendations have not always been embraced by the state Medicaid agency, the Department of Public Welfare, as an additional barrier to change.
- RHODE ISLAND
(a) THE PLANNING PROCESS
Rhode Island does not have a comprehensive Olmstead planning process. However, it did obtain a grant from SAMHSA to develop a plan to move children with mental illness to less restrictive settings.893 The Parent Support Network of Rhode Island, a consumer organization, was to carry out the planning process under contract with the state Department of Children, Youth and Families (DCYF).894
Although DCYF has not issued such a plan, an intergovernmental task force chaired by two legislators, the Ideal System of Care Committee, published a plan in April 2002 to reform children’s services more generally over the next five years.895The plan’s central theme is transformation of the state’s service system for children and youth to a family-centered approach that would focus resources on preventing out-of-home placement and training in best practices. Under the plan, state agencies would collaborate more effectively under the leadership of a strengthened and restructured version of the Children’s Cabinet (an existing entity within the executive branch), toward the goal of empowering communities to support children and families more effectively. The DCYF service delivery system would be restructured from a system of isolated individual providers to one of regionally focused, community-based, lead agency-managed care networks that will have to accept all referrals and cannot reject the children and youth who pose the greatest challenges. These networks will then be required to ensure that the children, youth, and families referred to them are provided what they need when they need it within a comprehensive network of care and services. The committee also recommended developing agreements between DCYF and the Family Courts and other state agencies that share responsibility for children’s services; developing DCYF and Medicaid provider capacity; developing provider fiscal management and training skills through a Child Welfare Training Program; and establishing lead agency-based care networks through an RFP process. Although the emphasis of the plan is on preventing unnecessary institutionalization of children and youth by reorganizing services in local communities, the committee recommended specifically that youth placed in out-of-state facilities be brought back to Rhode Island as in-state capacity is developed through fee-for-service arrangements with service providers.896
A more recent report by DCYF to the state House of Representatives more forcefully articulated the components of systems change necessary to prevent unnecessary institutionalization of children with disabilities. The report focused on the practice of “night-to-night” placements, that is, temporary placements in inappropriate settings, of children newly entering the DCYF system or those whose placements had been disrupted. The system’s effort to address this problem arose from litigation filed by the state Child Advocate in 1986, which resulted in a succession of consent decrees. The report noted that DCYF’s response to each stage of the litigation had been “to seek additional appropriations from the General Assembly to add more beds.”897 However, although those efforts resulted in temporary alleviation of the problem, each such success was short-lived. The agency concluded that the request for more out-of-home beds had failed to address the underlying causes of emergency placements:
The history of the serious efforts to eliminate night-to-night clearly demonstrates that simply adding more beds through an infusion of new funds does not address the root causes. The state’s current system is poorly structured to effectively address the chronic issues facing many of these young men and women and their families. “More of the same” is inefficient and, given current state resources, at best is a severely constrained approach. A different much more systemic response must be taken to allow the DCYF and the state to effectively address this issue.898
The agency concluded that the only way to resolve the costly cycle of requesting more beds and dollars was “providing youth and families with strong community-based systems of care,” thus reducing the number of youth referred to DCYF and allowing the agency to focus limited resources on the youth and families needing the highest levels of support and services.899
To accomplish this, however, the agency concluded that it needed an “an even deeper strategic and systemic approach” in which all the systems supporting children and youth, not only DCYF, would make changes:
This effort must be led by the DCYF in full collaboration with other state agencies and our provider partners, schools, law enforcement, advocates, the Family Court, the Governor and the members of the General Assembly. Collectively we have the expertise and resources in Rhode Island to develop a system which is more responsive to the strengths, needs and risks of children, youth and their families.900 Only then would DCYF be able to “reserve the most costly residential treatment programs for those youth who truly need that level of care and keep their length of stay in those placements only as long as necessary and follow-up with strong transitional support.”901 To that end, the agency embraced the recommendations of the Ideal System of Care Committee, including the shift to a Lead Agency Care Network Service Delivery Model and strengthening the roles of DCYF regional offices and their staff.902
In June 2002, the Rhode Island legislature enacted a Joint Resolution “to reform and finance long-term care services through a consumer-centered system of coordinated services and integrated care.”903 The legislative action includes two provisions that have potential for significant change in the state’s long-term care system for elders. First, the legislature voted that the allocation of additional funds in the coming five years would be divided between institutional and community services in proportions ranging from 90 to 10 in favor of institutional services in the first year of the plan to 50 to 50 in the fifth year of the plan. Second, the legislature voted that by March 2003, all agencies with responsibilities for long-term care should submit a proposal for long-term care system reform.904
(b) PROGRESS IN COMMUNITY INTEGRATION
Rhode Island closed its only state developmental disabilities institution in 1994; however, since that time, no further reduction in the number of institutionalized persons with developmental disabilities has occurred. In 2000, 162 persons lived in nursing facilities and another 25 in a private ICF/MR. These numbers were fairly stable over the preceding five-year period.905 Beginning in the 1990s, advocates have focused, with significant success, on encouraging the system to enhance community integration by enabling people with developmental disabilities to move from group homes to more natural settings, such as family living and supported living. The reduction in the number of persons living in ICFs/MR with four to 15 beds and other group homes of more than six beds from 836 in 1990 to 198 in 2000 reflects the results of that effort.906 The state Arc reported recently that a consent decree was recently signed that would allow 40 persons to move from group homes to family living situations.907
At the end of 2001, 76 persons housed in state psychiatric institutions had been there for more than a year.908 Nursing facility use is fifth in the nation when measured as a percentage of the state’s total population age 65 and older. Although the number of nursing facility residents declined very slightly (0.8 percent) from 1996 to 2001, the number of beds rose by 6.1 percent,909 and Medicaid spending on nursing facility services increased by 20 percent during the same period.910
By fall 2002, the efforts of the Rhode Island DCYF to bring children home from out-of-state residential placements already had borne fruit. The agency placed a moratorium on out-of-state placement and, in 2001, engaged a contractor to review all children placed in out-of-state Purchase of Service (POS) programs to ensure that children placed in these programs were returning to Rhode Island in a timely manner. In DCYF’s assessment, the contractor’s review was highly effective: From April 1, 2001, through September 11, 2002, a total of 209 children left POS placements, both in-state and out-of-state. The majority, 57 percent, returned home, most with wraparound services; 33 percent moved to a less restrictive level of care; and 10 percent moved to a more restrictive level of care, such as a shelter, hospital, or other POS placement. The agency concluded that the combination of the moratorium and the placement review had saved the state more than $1.5 million in FY 2002 and is expected to save an additional $3 million in FY 2003. The agency has expanded its contract for review of POS programs to include similar reviews of all children and youth in out-of-home placements, with children and youth in emergency shelter programs scheduled to be reviewed beginning in January 1, 2003.911
(c) SYSTEMS CHANGE ACTIVITIES
Rhode Island has a Community-Integrated Personal Assistance Services and Support grant to provide consumer-directed personal assistance services for children and families to children and families with all types of disabilities. The grant is designed to fill a gap in personal assistance services, which under the state plan are not available to children outside residential facilities.912
- SOUTH CAROLINA
(a) THE PLANNING PROCESS
In November 2000, Governor Hodges issued an executive order establishing the South Carolina Home and Community-Based Services Task Force and charging it with developing a comprehensive, effectively working plan for compliance withOlmstead. The task force was to conduct a review of all services available to people with “physical, mental or developmental disabilities” in South Carolina, analyze their availability and efficacy, identify affected populations, improve the flow of information about support services in the community, and remove barriers that impeded community inclusion. The task force was to ensure the involvement of consumers, families, providers, and advocates and submit a report to the governor with specific recommendations for improvements in services and a timeline for implementation.913 A task force of 33 members, representing state agencies, service providers, consumers, families, advocates, and members of the state legislature, was formed and divided into three workgroups that paralleled the three state agencies that provide services to people with disabilities in South Carolina: the Department of Disabilities and Special Needs (DDSN) (persons with developmental disabilities, autism, brain injuries, and spinal cord injuries); the Department of Mental Health (DMH); and the Department of Health and Human Services (HHS) (elders and people with physical disabilities). The task force issued its report in August 2001.914
Although the task force report lists the home- and community-based services available to people with disabilities in South Carolina and the numbers of persons waiting for services (but only for those services that maintained waiting lists),915 it does not really analyze the extent to which those services could be used to get people out of institutions. The plan does not specifically address the level of awareness and agreement among stakeholders and decisionmakers on the elements needed to create an effective system; however, it does commit the state to the principles of choice and self-determination, autonomy and consumer direction, flexibility, cultural sensitivity, empowerment, community integration, and access to activities and resources available to all.916
The plan sets the goal, “All persons living in institutions who have indicated their desire to move to a community setting should move to the community within one year.”917 This is inconsistent with Olmstead, which held that institutionalized persons have a right to move to a community-integrated setting if they can handle and benefit from community placement and if they do not oppose community placement. To exercise the right, the person does not need to have affirmatively indicated a desire to move. The plan assumes that many people will choose to remain in the institutions, for it recommends improvements in the quality of services in institutions and nursing facilities.918
The plan recommends establishing an independent assessment process, in which institutional residents would be asked, “Where and how do you want to live?” and, “If you had the option of getting help in some other setting, including a home of your own, what would you use?”919 Although the concept of independent assessments is positive and the task force also recommended developing a “community curriculum” to better inform consumers and families on the options available to them in the community,920 the process does not ensure that the decision of whether to pursue community placement will be made by “the affected individual” rather than by a parent or guardian. The task force also recommended that a “choice” question be incorporated into the Minimum Data Set (MDS) questionnaire, asking residents whether they would prefer to live somewhere else, and suggested that if this inquiry proved useful, the state might advocate that CMS apply it nationwide and incorporate it into the MDS software package.921 The plan stops short of stating that independent living advocates should play a role in the assessment process.
The plan does not identify the number of persons in each type of facility who could be served in a more integrated setting. The plan notes that “there is no single, comprehensive survey indicating the number of institutionalized individuals who may meet the conditions for community services described in the Olmstead decision.” The only relevant data are collected for Medicaid-supported applicants for nursing facilities, who are assessed to determine whether they meet the medical criteria for nursing facility placement; this, of course, does not address whether the person could live in the community. The plan recommends that improved data systems be established to track persons who are affected by the Olmsteaddecision as well as those at risk of unnecessary institutionalization;922 however, if such tracking systems are based on a flawed understanding of who is affected by Olmstead, they would be of limited use.
The plan does a good job of analyzing the gaps in services, the lack of service capacity for persons at risk of institutionalization, and the barriers to returning to the community once a person is institutionalized. The gaps include lack of timely identification of people most vulnerable to unnecessary institutionalization; screening through Medicaid’s Early Periodic Screening, Diagnosis and Treatment program that is inadequate to ensure that children with all disabilities, especially mental illness, are provided treatment that will prevent worsening disabilities and placement in more restrictive settings; lack of services for people with mental illness and co-occurring substance abuse; categorical eligibility criteria that exclude people with disabilities such as spina bifida, ALS, cerebral palsy, multiple sclerosis, and brain injuries; and lack of adequate crisis response.923 The barriers to returning to the community include lack of knowledgeable transition coordinators; loss of personal resources; family fears; delay between time of discharge from nursing facilities and initiation of community supports, such as home modifications, assistive technology, durable medical equipment, and case management; state policies that do not allow a “bed hold,” thus discouraging people from attempting a move to the community if they fear losing their institutional placement if community placement is not successful; lack of financial incentives for facilities to help residents move to the community; and inadequate interagency planning for children.924
The plan recommends preventing unnecessary institutionalization of persons at risk of institutionalization by training “all persons involved in the long term care process,” including
South Carolina HHS eligibility workers and hospital discharge planners, to provide clear explanations of home- and community-based services before the person chooses the location of his services.925
Most of the recommendations in the plan are designed to improve existing community services, including service coordination, direct support professional recruitment and retention, family support, respite, assistive technology, transportation, residential support, and self-advocacy. The plan set modest goals for increase in community capacity, for example, the provision of residential and day services for an additional 300 persons each year for the next two years by DDSN (the agency had provided an average of 181 new residential opportunities for persons with developmental disabilities from 1992 to 2000, but the proposed 300 new programs would also service people with autism and brain or spinal cord injuries)926 and an increase in residential opportunities for 20 persons each year by DMH.927
Funding to develop community homes for 300 additional persons was in fact included in DMH’s budget for 2002-2003. The budget documents justify the additional funding on the ground that it “will avoid lawsuits that might arise from the ADA aspects of the Olmstead Supreme Court decision requiring that waiting lists move at a reasonable pace.”928 However, the 300 persons were not slated to come from institutions but from the waiting list for community services, which as of June 2001 included more than 1,500 people.929
The plan recommends amending the Nurse Practice Act to allow implementation of a Medication Administration Technician Certification, the delegation of other routine procedures to specially trained direct care staff, and creation of an exception to the definition of nursing for consumer-directed personal assistance services provided in the community. Other recommendations include eliminating gaps in eligibility for services; conducting an economic analysis of the potential long-term cost savings that would be realized by developing a community infrastructure; reviewing long-term care insurance currently available in the market for potential institutional bias; including personal care services and private duty nursing services as options in the Medicaid state plan; and integrating funding streams for nursing facility and waiver services so that funding can follow the person.930
At about the same time that the Home and Community Based Task Force was submitting its report in the summer of 2001, the director of the state Department of Mental Health commissioned a planning process within his agency to “guide the department over the next few years of system change.”931 The Steering Committee for the planning process included the directors of the principal advocacy organizations for persons with mental illness, among them the Protection and Advocacy system and consumer and family groups.932 The planning process began in November 2001 by eliciting input from more than 650 stakeholders through a combination of distance education technology and face-to-face meetings. The director of the DMH had already decided to refocus the agency’s mission on recovery and to give priority in service development to “recognized, evidence-based best or promising practices.”933 Thus, local stakeholders who gathered at the downlink sites were told the director’s vision for the department and asked to identify those programs and services they thought the department did well, the best practice models they would like to enhance or begin, and the steps needed for system change. University-based external facilitators helped gather and analyze the data and input from stakeholders, and a draft plan was submitted to the South Carolina Mental Health Commission in March 2002.934
Making Recovery Real does not appear to have been coordinated with the work of the Home and Community Based Services Task Force, and the work of two planning groups seems somewhat duplicative. Making Recovery Real contains a visionary statement of values, for example, in its commitment to eradicating stigma and to community-based, recovery-focused support: “We believe that people are best served in or near their own homes and the community of their choice. …We believe in services that build upon critical local supports: family, friends, faith communities, healthcare providers and other community services that offer employment, learning, leisure pursuits, and other human or clinical supports.”935 The plan calls for systemic change in the way services are funded, allocating some proportion of the budget for psychiatric hospitals to local community mental health centers to be used for purchase of services, and redesigning the budget allocation process to be based on performance criteria.936
But the plan’s actual community integration goals are modest. It refers to Olmstead only once, in the context of setting a goal for the development of 50 additional housing units for consumers with mental illness in 2003 and 2004.937 Goals for expanding services that stakeholders and the DMH found effective in reducing institutionalization-such as the Toward Local Care program, which is based on principles of recovery and merges such services as employment, housing, and assertive community treatment-typically are limited to 10 percent a year.938 Although the DMH had committed in its goals for fiscal year 2001-2002 to “begin to develop” an assessment
protocol to determine all consumers’ needs for community services,939 the Making Recovery Real plan does not mention assessing institutionalized persons with mental illness to determine whether community placement might be possible.
(b) PROGRESS IN COMMUNITY INTEGRATION
From 1990 to 2000, South Carolina reduced the number of persons with developmental disabilities who were institutionalized in large congregate facilities by about 50 percent. Virtually all the reduction was in the population of state institutions, which declined from 2,254 to 1,115 in 2000.940 The pace of movement from the state-operated institutions slowed significantly after 1999, with a reduction of only 44 persons in 2000 and 31 persons in 2001.941 The number of residents of private ICFs/MR has remained stable at around 45, and the number of persons with developmental disabilities in nursing facilities has fluctuated but is even higher now (at 121) than it was in 1990 (117).942 South Carolina had no small residential settings of 6 persons or fewer for people with developmental disabilities until 1992, but by the year 2000, 2,394 persons lived in such settings.943
The average daily census of South Carolina’s psychiatric facilities declined from around 1,600 in 1990 to around 1,000 in 1996 but has remained stable since then.944 At the end of 2001, 340 persons institutionalized in state psychiatric facilities had been there for more than one year.945 South Carolina experienced some of the highest increases in nursing facility population (9.4 percent) and nursing facility beds (7.7 percent) between 1996 and 2001,946 while Medicaid spending on nursing facilities increased by about 37 percent during the same period.947 South Carolina is in the mid-range of the states in nursing facility population measured as a percentage of the total population age 65 and older, with 16,117 persons.948The state HHS reported that 225 persons were on waiting lists for nursing facility services in 2001, although this figure had declined from 399 in FY 1998-99.949
(c) SYSTEMS CHANGE ACTIVITIES
Even before the state’s Olmstead task force had begun its work, South Carolina was already using a “money follows the individual” formula in its developmental disabilities service system. The 1997-98 and 1998-99 Appropriations Acts gave the Department of Disabilities and Special Needs the authority to retarget resources, realign its workforce and shift funding from the state institutions to local communities. During those two years, 165 employees at the state institutions accepted voluntary separation agreements, and the funds for their salaries were transferred to local disability boards. In 2001, the department transferred $2.4 million from the state institutions to local community programs to fund services for the 31 people who moved from state institutions that year and reduced staffing of the institutions by 28 full-time employees.950
South Carolina received a Real Choice Systems grant of $2,300,000 to carry out two projects. One is a database of information about services for children and adults; the other is a pilot program in two parts of the state to create the infrastructure to support consumer-directed services across disability groups, including the development of support coordination, fiscal intermediaries, and the use of cash equivalencies.951
- SOUTH DAKOTA
(a) THE PLANNING PROCESS
According to the report of the National Council of State Legislatures in early 2002, South Dakota is not conducting anyOlmstead-related activities, and state officials do not consider that the state is in noncompliance with the Olmsteadstandard.952
(b) PROGRESS IN COMMUNITY INTEGRATION
The number of institutionalized persons with developmental disabilities declined by less than 30 percent between 1990 and 2000. In 2000, 196 persons remained in a state facility, about half the 1990 figure. The number of persons with developmental disabilities in nursing facilities actually increased, from 141 in 1990 to 177 in 2000.953
In December 2001, the state closed a juvenile corrections facility, the State Training School in Plankinton, that had housed 140 children and youth in 1999 but whose population had declined steadily. Governor Janklow announced the closure only about a month before the facility closed and estimated that the state could save $1 million by placing students in state-operated and private programs elsewhere.954
Although South Dakota, with 6,952 nursing facility residents, ranks second in the nation in nursing facility use when measured as a percentage of the state population as a whole age 65 and older, both nursing facility population and the number of beds has declined at rates that are significantly higher than the nation as a whole (by 8.6 percent and 5.9 percent, respectively).955 During the same period, however, Medicaid spending on nursing facilities grew by almost 60 percent.956
(c) SYSTEMS CHANGE ACTIVITIES
In 2002, the state enacted H.B. 1132, establishing a Children’s Mental Health Task Force. The task force is charged with investigating alternatives to parents’ having to relinquish custody to obtain out-of-home mental health services as well as barriers to service delivery, such as professional shortages, funding adequacy, and access in rural areas.957
(a) THE PLANNING PROCESS
Although Tennessee has had an active Olmstead coalition composed of advocates for the last two years, the state has declined to participate in formal Olmstead planning activities.
In June, 2001, Tennessee advocates participated in an ILRU/BIA Olmstead training and committed on their return home “to bring advocates, consumers and some money together to fundamentally change the way Tennessee provides long-term care services and supports to comply with the ADA” and specifically, to assure that funding follows the individual.958 The participants in the ILRU/BIA training promptly formed an Olmstead coalition composed initially of representatives of the Tennessee Protection & Advocacy Association, People First of Tennessee, the state Arc, the Tennessee Mental Health Consumers Association, several Centers for Independent Living, the Developmental Disabilities Council and other disability organizations and developed a broad community organizing strategy to educate disability activists and their potential allies about the Olmstead decision and create a grass-roots movement for change.959 Withing a month the Coalition had convened a state-wide Call to the Table, enlisted representatives of other disability organizations such as ADAPT, United Cerebral Palsy and the Brain Injury Association and planned local forums around the state to identify the community services that are currently available and those that need to be developed.960
The Coalition organized workgroups devoted to Consumer Involvement, Needs Assessment, Community Baseline, Housing, Quality Assurance, State Budget and Community Infrastructure. The tasks assigned the workgroups included facilitating “town hall” meetings; meeting with local housing authorities and legislators; identifying the number of people in various types of institutions including county nursing homes, residential schools, jails, board and care facilities and homeless shelters; supporting institutional residents who wish to move; improving transition processes; establishing a baseline of existing community services and those that are lacking; identifying needed changes in quality assurance systems; identifying existing costs and the resources that will be needed to support community living; and improving data systems, policies and procedures and other elements of the community infrastructure.961 The group established as its goal the development of a plan to include all affected disability populations including elders and people with HIV/AIDS.
In 2002, during the gubernatorial election, the Coalition developed a position paper noting that Tennessee ranked 45th in the provision of home and community based waiver services, that total expenditures for institutional care represent 88% of the state’s long-term care dollars, and that Medicaid resources for home health services and Aged, Aged/Disabled and Physically Disabled waiver services comprise only one percent of the state’s long term care expenditures. The position paper called upon the new governor to issue an executive order concerning Olmstead implementation, create a broad inter-agency Commission to oversee the implementation of the creation of home and community based services, expand waiver programs, enable funding to follow the person, develop cost efficient models for consumer-directed services and provide for independent contractors to assess the need for community services for “all people with disabilities currently living in institutions who want the choice to move to the community.”962
The Coalition continued to hold public forums and training events on Olmstead-related issues and to try to collect data on institutional residents’ need for community services. However, the Coalition’s ability actually to develop an Olmstead plan was severely curtailed by the refusal of the relevant state agencies to cooperate in the planning process in any meaningful fashion. Without a working relationship with the state agencies with access to data or authority to collect it, it was impossible for the Coalition to collect the data needed to develop an Olmstead plan or meet its own ambitious planning goals. The Tennessee Olmstead Coalition’s advocacy work is exemplary for its broad vision, clear-sighted understanding of the necessary components of an Olmstead plan and ability to organize at the grass-roots level. Its experience illustrates the limits of Olmstead planning by advocates working alone when the state refuses to collaborate.
Tennessee certainly could benefit from a comprehensive Olmstead since organizationally, programmatically and financially, the state’s service systems for persons with disabilities are in disarray. Because of serious problems in compliance with a consent decree affecting one of the state’s developmental disabilities institutions, responsibility for the Department of Mental Retardation Services (DMRS) was transferred to the Department of Finance and Administration,963 where it coexists in an uneasy relationship with the Bureau of TennCare, the state Title XIX agency. The latter agency administers a Medicaid managed care waiver that imposes rigid limitations on a wide range of services needed to support people with disabilities in the community, ranging from therapies and behavioral support to medical services and pharmaceuticals. A legislatively-mandated planning commission reported in November, 2000 that more than 2,000 people with retardation and developmental disabilities were waiting for services; that the service system was “cumbersome and inflexible, providing individuals and their families only expensive options or little or no services”; that rules and regulations are barriers to providing more cost-effective services; that development of new services was hampered by lack of start-up funds; and that the system could not handle a significant increase in service recipients in the future.964
In 2001, CMS imposed a moratorium on the largest of Tennessee’s home and community-based waivers for persons with developmental disabilities, thus making it almost impossible for the institutionalized persons with disabilities who potentially could be served by that waiver to move.965
In 1999, an inter-agency Long-Term Care Services Planning Council found that although four previous planning groups had found that “services other than nursing homes were very limited for individuals who are not able to function totally independently,” none of these groups had developed a plan of action to address the severe lack of availability of community services.966 Although the Planning Council developed a new waiver application that increased the number of elderly and disabled waiver recipients from 650 to over 2,500, the services included in the waiver are very limited and do not include such essential services as respite, adult day services, assistive technology and assisted living support.967
A Three Year Plan drafted by the Tennessee Department of Mental Health and Developmental Disabilities has as one of its purposes to “[p]rovide a means by which TDMDD addresses the Olmstead decision.”968 Although this is the only state planning document that even purports to address Olmstead implementation, it is far from a comprehensive plan. Apart from a commendable goal of providing rental assistance and other housing supports to several thousand additional persons with mental illness (a goal that was probably driven by TDMHDD’s System Change Grant discussed infra), the plan sets no targets for increasing community services and supports.969
(b) PROGRESS IN COMMUNITY INTEGRATION
In 1991, 1992 and 1995, the self-advocacy organization People First of Tennessee and the United States Department of Justice filed a series of lawsuits against Tennessee’s four developmental disabilities institutions.970 The three cases were resolved in consent decrees requiring community placement for all institutional residents recommended for community placement by their interdisciplinary teams. Virtually all residents of the four institutions have been recommended for community placement, and the smallest of the four institutions has closed. Implementation of the consent decrees has been painfully slow, in part because Tennessee’s service system for persons with significant developmental disabilities was embryonic at the time the cases were settled, in part because of administrative and fiscal barriers to the development of quality community services. In any event, the number of Tennesseeans with developmental disabilities living in state institutions declined from 1,947 in 1990 to 903 in 2000, about 54%. However, the number of persons with developmental disabilities in nursing facilities has decreased only slightly during the same period, from 1,006 to 892.971
At the end of 2001, 334 of the 981 persons receiving inpatient services in Tennessee’s state psychiatric hospitals had been there for more than one year.972 In the 1990s, Tennessee received an exemption from the Institutions for Mental Diseases (IMD) exclusion as part of its TennCare managed care waiver, thus allowing Medicaid reimbursement for persons institutionalized in psychiatric hospitals; however, the exemption will expire by 2005.973
With 34,588 nursing facility residents in 2001, Tennessee ranked 12th in the nation in the percentage of the population over age 65 in nursing facilities (4.9%) and 17th in the rate of increase (0.7%) between 1996 and 2001,974 while Medicaid spending on nursing facilities increased by about 25% during the same period.975
(c) SYSTEMS CHANGE ACTIVITIES
Tennessee received a Real Choice Systems Change Grant in 2001 to design and implement a consumer-directed, accessible housing system for persons with mental illness. Project activities
include hiring four consumer housing specialists and facilitating a series of housing academies and summits.976 In 2002, Tennessee received a Community-Integrated Personal Assistance Services and Supports Grant to develop and pilot a system of consumer-directed personal assistance.977
(a) THE PLANNING PROCESS
Utah advocates report that the initiative for Olmstead planning in Utah was consumer-driven, with Barbara Toomer of the Disabled Rights Action Committee (DRAC) taking a leadership role, but that the planning process was unresponsive to people with disabilities. They report that although people with disabilities were welcome to attend and provide input, their input did not affect the plan that the state ultimately drafted.
Disability advocates formed a coalition consisting of DRAC, the Legislative Coalition for People with Disabilities, United Cerebral Palsy, the Independent Living Centers, and the Multiple Sclerosis Society. However, coalition members did not decide on a single, unified strategy but have tended to act individually.
The Olmstead planning process in Utah that emerged in response to pressure from advocates was a joint effort of the Governor’s Office of Planning and Budget, the Department of Health, and the Department of Human Services, with participation by other agencies (notably, contributions by housing and transportation agencies are not reflected in the plan). The plan, issued on March 26, 2002, addresses services for elders, adults with disabilities, children placed outside their home, people with mental illness, people with developmental disabilities, and youth in corrections facilities.978
The most obvious gaps in the Utah plan are its failure to include a census of institutions, to spell out the pace of movement from institutions to community, or to address waiting lists for community services. The plan acknowledges that several waiting lists exist for services in the community and for available housing, but elected not to include these in the plan because they are not waiting lists of persons in institutions waiting for services.979 The implication is that the latter type of waiting list does not exist. In any case, the plan does not spell out what needs to be done to make waiting lists move more quickly.
The plan contains a “Home- and Community-Based Initiatives Action Plan” and a description of “cross-agency action planning,” but neither is an action plan with measurable goals, timelines, and a list of concrete action steps. Rather, these provisions are general descriptions of the activities the state needs to undertake or continue to improve its service system, for example, “integrate self-determination concepts into the long-term care system.”980 The plan contains no timelines for assessments and states only that it will “[d]esign the plan for continuing the Nursing Facility Consumer Education and Assessment Process and determine the feasibility of implementing the processes over long term.” As discussed below, the Consumer Education and Assessment process is not designed to identify everyone who can handle and benefit from community living.
The plan acknowledges that people frequently enter the long-term care system without accessing more community-integrated services and that the categorical delivery of services and the lack of community providers are also barriers to community integration.981 It does not, however, discuss how these barriers will be eliminated, for example, how hospital discharge planners and others who refer people to nursing facilities will be instructed not to do so. The plan does not examine what needs to be done to ensure that people waiting for services are able to move from waiting lists and receive needed community services. Apart from a discussion of the Portability Project, the plan does not state how funding sources will be organized into a coherent system of long-term care or how the system will be changed to redirect funding from nursing facilities.
After the planning process was underway, a group of Utah advocates attending an Olmstead training sponsored by ILRU decided to request a meeting with the Medicaid director to explain what they expected in the state’s Olmstead plan and to request the involvement of housing and transportation agencies and additional groups of consumers.982 Although the plan contains a list of disability advocacy organizations that provided input,983 advocates report that little consumer input was in fact reflected in the plan.
After a draft of the plan was issued in November 2001, the leader of the Utah Olmstead Planning Group of advocates submitted critical comments on the draft, noting that the plan contained no commitment from the governor, that it was impossible to identify much in the plan that ultimately would be implemented, and that concrete goals and funding and budget requests that were required were not included in the plan. The advocate noted that although the plan gave lip service to input from people with disabilities, none of the input we have given in each of these areas appears to have found its way into this ‘plan.’
… Of particular frustration is the fact that there seemed to be agreement from the state to much of our input that was subsequently discarded. There is in fact a sense of being “used” to lend credibility to a process that has in fact been a farce.984
The advocate also criticized the lack of data or concrete numbers of persons needing community services in the plan, that community agencies in housing and transportation or educational agencies were not meaningful collaborators in the planning process, that the supports needed for people to live in the community were not identified, and that persons at risk of institutionalization were not a target of the plan.985 However, the final plan issued in March 2002 was not changed to address these comments.
The leader of the Utah Olmstead Planning Group reported that the state ignored virtually every criticism that he and other advocates made of the plan, including a detailed critique authored by the Disability Law Center. The state’s position was that CMS and OCR, in their recommendations (on which the advocates’ training through ILRU training had been based and on which their critiques of the plan were based) both exceeded their authority. Thus, the state had no obligation to address waiting list issues; set specific goals for movement into the community; or conduct good, accurate assessments of people in nursing homes or at risk for nursing home placement.
Advocates report that the state has cut funding and services in tight fiscal times, including funds needed to make the Medicaid Ticket to Work operative, that the systems change grants discussed below have not significantly increased access to community services, and that nothing approaching a “comprehensive, effective, working” plan or effort yet exists.986
In December 2002, The Arc of Utah, several individuals with disabilities waiting for services, and the Utah Disability Law Center, the state’s Protection and Advocacy organization, filed suit in federal court against the Utah Department of Health, raising claims under Title XIX of the Social Security Act and the Americans with Disabilities Act. The plaintiffs asserted that the state’s waiting lists for services violated the ADA by placing people with disabilities at risk of institutionalization. The state’s motion to dismiss is pending.987
(b) PROGRESS IN COMMUNITY INTEGRATION
In the past 10 years, movement from Utah’s institutions to the community for people with developmental disabilities has been slow; the net decline in population of all large congregate settings has been only about 25 percent. Population of state institutions has been halved and was 236 in 2000; the population of people with developmental disabilities in nursing facilities declined by 50 percent, but the population of large private ICFs/MR increased.988 Some of the movement from the state institution was the result of a 1993 settlement agreement in a lawsuit filed by the Utah Protection and Advocacy system.989 The state’s Portability Project will probably accelerate movement to the community by allowing residents of ICFs/MR to transfer to waiver services with portable funding.990
At the end of 2001, 126 residents of Utah’s state psychiatric facility had lived there for more than a year.991 Utah’s nursing facility population of 5,592 places it in the middle of the states in nursing facility use when measured as a percentage of the total population age 65 and older. From 1996 to 2001, nursing facility population declined by 4.2 percent while the number of beds grew quite significantly (by 8.7 percent),992 and Medicaid spending on nursing facilities increased by about 8.5 percent during the same period.993
(c) SYSTEMS CHANGE ACTIVITIES
In the past several years, Utah has initiated two systems change initiatives. In 1998, the legislature enacted the Portability of Funding for Health and Human Services law, and subsequently, in April 1999, the Division of Services for People with Disabilities (DSPD) and the Department of Health Care Financing (DHCF) initiated an open enrollment process to allow residents of ICFs/MR and waiver programs to transfer from one service setting to another. Because DHCF operated the ICF/MR program and DSPD operated the home- and community-based waiver, this also meant transition from one division’s services to another. The project requires budget neutrality and an evaluation and planning process to determine whether transition is feasible; thus, as designed, it probably falls short of the requirement of 42 U.S.C. § 1396n(c) that ICF/MR-eligible Medicaid beneficiaries be offered a choice between ICF/MR and waiver services. Nevertheless, the project has enabled about 57 persons to move from ICFs/MR to the waiver while maintaining budget neutrality.994
The second initiative, called FlexCare, is a three-year demonstration project initiated by the Utah Department of Health in April 2000 to develop experience in transitioning nursing facility residents to home- and community-based settings with individualized case management and flexible services. The program also serves persons at risk of nursing facility placement. As of October 2001, 145 persons were enrolled in the project; of those who moved, 62 percent transitioned to assisted living facilities and only 14 percent returned home.995
Beginning in January 2001, under a grant from the Center for Health Care Strategies, Inc., the Utah DHCF carried out a Nursing Facility Consumer Education and Assessment Process to inform nursing facility residents about the long-term care services available in other settings.996 This project is often cited as a model for other states.997 The project first conducted education outreach to nursing facility residents, then conducted comprehensive needs assessments of interested residents to determine whether the person had a reasonable potential to move to the community. Teams composed of representatives of the local Area Agencies on Aging, a local health department, and six Independent Living Centers (ILCs) were engaged to conduct the educational outreach, and two-member clinical teams from the AAAs were contracted to perform the assessments. Local ILCs were to serve as consultants to the clinical teams to contribute their expertise in the needs of persons with disabilities and the resources available to meet those needs. However, in most cases, the clinical teams failed to invite the ILCs to participate, and in general the project evaluation found that the project was unsuccessful in bringing together project teams that could share knowledge and expertise about the range of available local services for people of all ages. Instead, “the majority of project teams split up along traditional lines and oriented themselves to the subgroups that each team member was most familiar with,” that is, elders or young adults with disabilities.998
The education phase of the project reached 995 persons, representing 19.4 percent of the persons who lived in the target facilities. The teams held group education sessions in the nursing facilities and invited the attendees to meet individually if they wanted to continue to explore community options. People who wished to continue the process were referred to the clinical teams for needs assessments. The assessment was conducted without reference to available services, and an analysis of available community services was then conducted to identify resources that matched the person’s needs. Of the 995 persons who participated in the group education sessions, 181 requested follow-up individual interviews and 152 requested a needs assessment; of those persons, 135 were actually assessed. The teams concluded that 63 of the 135 had a reasonable potential for transition to the community, and the remaining 72 were determined to need continued institutionalization, “due primarily to complex physical and/or behavioral health conditions that could not adequately be addressed within the infrastructure available.”999 As of January 2002, a total of 30 persons of the original 995 had moved to noninstitutional settings; half transitioned to Medicaid home- and community-based services and the other half made their own arrangements. The Center for Health Care Strategies, Inc., (CHCS) reported that most of the persons who made their own arrangements had lived in the nursing facilities for short stays only.
At its outset, the project had an advantage: The director of the state Department of Health had emphasized to the nursing facility industry the need to communicate with nursing facility residents about alternatives to institutionalization. By the time the project began, “the Department had worked through many of the issues of authority and access to nursing facility residents.”1000 However, the study shows how formidable the barriers to movement from nursing facilities can be. Attendance of nursing facility residents at the group meetings varied with the efforts of the education teams and facility staff. The teams tended to be conservative in their assessments of individuals’ potential for transition. The study showed that significantly more than the allotted eight hours was needed for assessment and analysis of available options. The study confirmed that alternative home- and community-based services do not exist for many persons in nursing facilities, including people with significant behavioral disorders, persons with substance abuse problems, and people who need frequently skilled nursing intervention. Lack of affordable, accessible housing was also found to be a huge barrier.1001
Although the study as designed did not reach most nursing facility residents who under the Olmstead standard have a right to services outside the institution because it assessed only those persons who affirmatively expressed a desire to move, it provides valuable insight into the barriers to movement from nursing facilities. In the meantime, advocates report that such progress as has been made in moving people out of nursing facilities is largely due to the work of ILCs that manage to patch together community services for people whom they advocate.1002
(a) THE PLANNING PROCESS
In June 2002, state law established an Olmstead advisory commission (Senate Bill 224, signed by the governor on June 13, 2002). The commission is situated in the Agency of Human Services. The legislation requires the advisory commission to submit a statute report by January 1 of each year to the governor and the legislature.1003 The National Council of State Legislatures reported in early 2002 that the Office of Civil Rights has advised state officials that they are in compliance withOlmstead standards.1004
(b) PROGRESS IN COMMUNITY INTEGRATION
Vermont has made significant progress in community integration of people with disabilities. It was the second state in the union to eliminate state institutions for people with developmental disabilities with the closure of the Brandon Training School in 1993. In 2000, 42 persons with developmental disabilities remained in nursing facilities; this number has fallen steadily since 1990, when 89 persons with developmental disabilities lived in such facilities.1005
Since the closure of Brandon, Vermont has continued to pursue the goal of increasing community integration by reducing the size of community residential settings, expanding supported employment (Vermont ranks fourth in the nation in the rate of people with developmental disabilities in community-integrated employment), and phasing out group homes in favor of more normal settings, such as supervised apartments, companion homes, and adult foster homes. From 1993 to 1999, the number of persons in supervised apartments increased by 30 percent and the number of persons in developmental homes increased by more than 80 percent, with corresponding decreases in the number of persons living in staffed group homes and small ICFs/MR.1006
Vermont’s community service system is unusual in that the “developmental home,” which may be either a home in which a person with disabilities lives with a companion or an adult foster home in which the person lives in a pre-existing household, is its primary service model. Benefits of that model include tax-free payments to foster families, which substantially increase the value of the income to host families, and the benefit to persons with disabilities of the social networks of the host family.1007
The state also uses its home- and community-based waiver to provide services called “flexible supports,” a service category approved by CMS in 1998, which includes personal support in the home and community, transportation, therapies, crisis services, environmental modifications and equipment, and any support other than service coordination and supported employment included in the person’s plan of care.1008 The state also has a system of cash payments to families.1009 Apart from the nursing facility residents, no Vermonter with developmental disabilities lives in a setting of more than six persons, and the largest group settings for people with developmental disabilities are two private ICFs/MR of six persons apiece. The average size of a community residence is 1.2 persons.1010
Vermont’s use of flexible, individualized services in normal settings is highly cost-effective, and the state does not have lengthy waiting lists. An independent study of Vermont’s use of home- and community-based waiver services concluded that
As a result of Vermont’s early and continued commitment to community service development and maximizing Medicaid federal participation (FFP) in its services, its commitment to the identification and expansion of cost-effective models of service, and its development and financing of family support, Vermont is able to maintain a system that has been generally able to respond to the demands for services placed on it.1011
Vermont monitors the number of persons with developmental disabilities who are incarcerated in correctional settings. Six such persons were identified in 1998.1012
At the end of 2001, none of the residents of Vermont’s state psychiatric hospital had been there for more than a year, and a total of only 55 persons resided at the hospital.1013 Vermont’s profile in nursing facility use is more or less average compared with the rest of the nation. The 3,293 nursing facility residents make it 18th in the nation in nursing facility use when measured as a percentage of the nation as a whole, and both the number of residents and number of beds were fairly stable from 1996 to 2001,1014 whereas Medicaid expenditures increased by only 7 percent during this period.1015
(c) SYSTEMS CHANGE ACTIVITIES
Vermont has a Real Choice Systems Change grant of $2,000,000 to improve integration and consistency of services across agencies for elders, persons with physical disabilities, and persons with mental illness and developmental disabilities. The broad goals of the project are to enhance choice, consumer control, and coordination of services.1016
In addition, the Vermont Department of Aging has a grant to develop rural, affordable assisted living from the Robert Wood Johnson Foundation. The initiative is a response to the finding that frail rural elders are more likely than their urban counterparts to enter nursing facilities. The Department is working in concert with the Vermont Housing Finance Agency and the Department of Prevention, Assistance, Transition and Health Access to support four demonstrations in assisted living, provide technical assistance to other projects and community groups, change policies and practices to encourage the development of high-quality assisted living services, and identify and plan for the quantity of assisted living services that will be needed to support the aging generation of baby boomers.1017
(a) THE PLANNING PROCESS
Virginia is one of the last states to begin an Olmstead planning process. The mandate to create a plan came from the state legislature, which in the 2002 Appropriations Act charged the commissioner of the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) to convene a stakeholder task force to implement the recommendations of Olmstead. The task force was to submit its final recommendations to the governor, the chair of the House Appropriations and Senate Finance Committees, and the chair of the Joint Commission on Health Care by August 31, 2003. In June 2002, DMHMRSAS met with representatives of four other state agencies to identify stakeholders to participate in the task force and assign responsibilities for administrative support, funding for speakers, travel, loop service, interpreters, Web site assistance, and alternative formatting.1018
The task force, chaired by the Virginia Secretary of Health and Human Resources, held its first meeting on July 31, 2002; the meeting was marred by complaints about the lack of accessibility of the meeting site.1019 Representatives of the Office of Civil Rights of the United States Department of Health and Human Services attended the meeting and presented OCR’s understanding of the elements of a comprehensive Olmstead plan.1020 The task force was organized by disability populations with a lead agency, which was to develop population-specific reports assigned to each, and Issues Teams, which were to examine broad issues that cut across populations. An impressive range of population groups were proposed, including mental illness (adult), emotional disturbance (children), mental retardation, substance abuse, Alzheimer’s/dementia, autism, physical disabilities, developmental disabilities, HIV/AIDS, brain injuries, deafness and hard of hearing, and blindness.1021 On the basis of stakeholders’ identification of cross-cutting issues, seven issues teams were organized in the areas of accountability; educating the public; consumers and families; employment; qualified providers; housing; prevention and transition services; and waivers.1022
By October 2002, when the task force chair reported to the House Appropriations Committee on the status of the planning project, 14 state agencies were participating or providing resources to the task force, including the Departments of Aging, Health, Housing and Community Development, Medical Assistance, and Rehabilitative Services and the Housing Development Authority.1023 The task force held a public comment session on November 4, 2002, and received comment from five remote sites, all state institutions. It is not surprising, therefore, that many of the public comments were from parents of people with disabilities who were institutionalized at those facilities and satisfied with their services there.1024
(b) PROGRESS IN COMMUNITY INTEGRATION
Virginia is a heavily institutional state. In 2000, more than 3,000 persons with developmental disabilities lived in large congregate settings: 1,744 in state institutions, 1,272 in nursing facilities, and 132 in a large private ICF/MR. Institutional populations decreased by less than 20 percent during the previous decade: Almost all the reduction came from state institutions, whereas the number of persons in nursing facilities and private ICFs/MR remained stable or actually increased.1025
Virginia’s nursing facility population of 26,875 is average (24th) among the states when measured as a percentage of the total population age 65 and older. The number of residents and the number of beds remained fairly stable from 1996 to 2001.1026
(c) SYSTEMS CHANGE ACTIVITIES
In 2000, the DMHMRSAS published a plan to restructure mental health services. The basic concept of the plan was to fund improvements in community mental health services through the sale of excess state facility land and buildings. Trust fund legislation was enacted to preserve income from the sale of these properties for the continued use of the mental health system.1027 Local community boards will decide how to use the funds to develop and purchase mental health services, including both community services and inpatient care. The plan calls for the transfer of inpatient services from state-operated facilities to community hospitals. State-operated services will emphasize long-term inpatient services. Elders living in state psychiatric facilities are to be transitioned to new Medicaid-reimbursed “gero-psychiatric residential services.”1028 State hospital beds would be reduced from about 1,800 to about 1,200 over a period of six years. Although the use of trust fund legislation to preserve the assets of outdated state hospitals for the mental health system is positive and, if implemented, the plan will fund the creation of new community services, its principal effect on the institutional population will be privatization and the transfer of older state institutional residents to specialized nursing facilities.
At the end of 2001, 771 persons housed in state psychiatric facilities had been there for more than a year.1029 Nursing facility beds increased by almost 12 percent from 1992 to 2000,1030 and Medicaid spending on nursing facilities grew by 34 percent.1031
- WEST VIRGINIA
(a) THE PLANNING PROCESS
In September 2000, Governor Underwood issued an executive order that an Olmstead task force be created no later than June 30, 2001 to do the following:
- Identify all institutionalized persons with disabilities and those at risk of institutionalization who “desire and would benefit from an appropriate community-placement setting.”\
- Identify needed services and costs to provide these community placements.\
- Develop a procedure to prevent unnecessary admission to institutions.\
- Recommend the best procedure for resolving complaints from people with disabilities regarding community integration.\
- Recommend to the governor changes in budgets, funding plans, and regulations and other methods to finance community-integrated services.\
- Recommend to the governor an Implementation Plan to facilitate the timely transfer of institutionalized persons who “desire and can benefit” from community placement.1032
The governor appointed a task force consisting of members of the Senate, the House of Delegates, people with disabilities, advocacy groups, providers, and representatives of state executive departments. The task force formed subcommittees on Identification, Grievance, Prevention and Services and Costs. Governor Wise extended the deadline for completion of the plan by executive order to December 31, 2001, of Governor Wise, and the completed document, both a report to the governor and an Olmstead state plan, was submitted on December 17, 2001.1033
An unusual feature of task force membership was the provision that representatives of the U.S. Department of Housing and Urban Development (HUD) would be appointed to the task force provided they agreed to serve.1034 A representative of HUD did in fact serve on the Services and Costs subcommittee of the task force.1035
The report to the governor of December 2001 is basically a plan to plan. It contains no numerical goals or specific targets either for deinstitutionalization or the creation of community services. As a general outcome, the report proposes that “people who choose to transition” (emphasis added) from congregate settings, rather than those who are unnecessarily institutionalized, will have the opportunity to do so.1036 The other general outcomes proposed for the plan focus on the changes in state law, policy, licensing, and certification changes that will be necessary to overcome the remaining institutional bias in the service system. Although those goals are modest, they are realistic, clear-sighted, and necessary.1037 Some of the specific policy changes envisioned by the planners include consumer control of personal assistance; elimination of the “home-bound” requirement; 24-hour, seven-day backup support; changes in Certificate of Need requirements; adding flexibility to the definition of qualified service provider; and opening the system to more providers.1038
The plan includes a partial implementation budget, but it includes only those funds that will be required for infrastructure changes. The planners recognized that costs for transitioning or diverting individuals from institutions would need to be added to the total cost of Olmstead implementation.1039
A component of the West Virginia plan that deserves to be replicated by other states is the infrastructure for Olmsteadimplementation and oversight for which it provides and budgets. That infrastructure includes an executive staff member on loan to serve as Olmstead director; an administrative assistant; office support; release time for agency and provider staff to serve on the Olmstead task force; travel and other compensation for consumers to serve on the task force; and a toll-free line answered by the Olmstead director and assistant as the “one-stop” point for all Olmstead-related information, including community service referrals, Olmstead complaints, mediation, and grievance procedures. Among the ambitious roles for the director is that of “assisting State agencies to ensure that their budget requests include sufficient funding to allow the State to meet its ADA obligations under the Olmstead decision.”1040 Equally promising are the state’s plans to hire four regional Olmstead specialists to respond to local inquiries, conduct training, maintain regional resource databases, and assist in transition and diversion activities and grievance procedures.1041
Another promising component of the West Virginia plan is its proposed procedure for resolving Olmstead-related complaints. An Olmstead complaint is “any potential service gap that could result in the consumer being returned to or potentially entering a more restrictive placement than that which he/she currently inhabits,” including a service gap that “prevents an individual from moving from an institutional or segregated setting to a community-based setting of his/her choice.”1042 The Olmstead director will receive complaints, acknowledge them within 24 hours, direct them to the appropriate agency, and ensure that they are resolved within 90 days of receipt. The complaint resolution process included provision for appeal and fair hearing.1043
In February 2001, the West Virginia Center for Healthcare Policy and Research and the West Virginia Health Care Authority submitted a report recommending changes in the state’s long-term care system.1044 The report found significant barriers to community integration in long-term care services, including separate entry points for nursing facility services and community services, respectively, conflicts of interest on the part of providers who determine eligibility for services and also provide the services, lack of public funding for nonmedical residential services, a certificate of need requirement for long-term care services that treats providers inequitably, and lack of coordination of services. The state’s Olmstead plan does not specifically address many of these problems nor state how they should be resolved; indeed, the Olmstead plan does not acknowledge the earlier report.
It was not until July 2002 that Governor Wise responded formally to the Olmstead report submitted to him in December 2001. By then, shortfalls in state funding available for plan implementation had become apparent. In a memorandum to Department of Health and Human Resources (DHHR) Secretary Nusbaum, Governor Wise stated that it was his intent “to implement many of the recommendations consistent with the availability of resources” (emphasis added). He directed Secretary Nusbaum to assign responsibility to a staff person with DHHR “to coordinate the elements of Olmsteadrecommendations and develop a plan for the effective implementation of the requirements of Olmstead v. L.C,” and instructed the secretary that he must find the necessary resources for plan implementation from within DHHR’s current budget.1045
The December 2001 report committed the state to review the existing Medicaid plan and the two existing state waivers and recommend changes that promote successful community living.1046 Although a few such changes have been made, significant limitations were placed on the amount and duration of waiver services in early 2002,1047 and most of these have not been reversed. On the positive side, in November 2002, changes in the Aged and Disabled waiver program were announced, including an end to the requirement that waiver recipients have “informal sources of support” available to them, which waiver services would supplement. Beginning in 2003, homemaker aides will be able to take recipients on community activities, reversing a limitation in services imposed in early 2002.1048
(b) PROGRESS IN COMMUNITY INTEGRATION
Of all southern states, West Virginia has progressed farthest in community integration. In 1998, as a result of the court orders in Medley v. Ginsberg, West Virginia eliminated state institutions for persons with developmental disabilities. In 2000, only 99 persons with developmental disabilities lived in general nursing facilities (40) or large private ICFs/MR (59)-a six-fold reduction since 1990. The number of persons with developmental disabilities in nursing facilities has continued to decline while the number of persons in a large private ICF/MR has remained relatively stable.1049 Partly as a consequence of its decision to use the ICF/MR model to implement the Medley decree, West Virginia lags behind other states in its use of the home- and community-based waiver.1050
The lawsuit, Benjamin H. v. Ohl, filed on behalf of persons with developmental disabilities waiting for home- and community-based waiver services in the late 1990s, has had a significant impact on developmental disability services. As a result of the lawsuit and a court order requiring that home- and community-based waiver services be provided with reasonable promptness not to exceed 90 days, the state expanded its waiver and reduced the length of waiting lists to 90 days.1051 Because of the state’s difficulty complying with the court order (reportedly, about 100 people remain on DHHR waiting lists for waiver services), the parties signed a Joint Stipulation on August 29, 2002, agreeing that the district court should retain jurisdiction of the case for enforcement purposes and that the parties will attempt to resolve the compliance issues by agreement.1052
Between 1990 and 1998, the state reduced the population of its state mental health facilities from 624 to 240 residents, most in forensic or acute care units.1053 At the end of 2001, only 48 residents of state psychiatric hospitals had been there for more than a year.1054 The state operates five long-term care facilities with a total of 536 beds; one facility is dedicated to tuberculosis care.1055 In 2001, West Virginia had 10,304 nursing facility residents, which placed near the middle (22nd) of the states in nursing facility use when measured as a percentage of the state’s population as a whole age 65 and older. The number of residents declined significantly between 1996 and 2001, by 11.5 percent, while the number of beds actually increased by 4.1 percent.1056
In 2002, the West Virginia DHHR invited applications for short-term start-up funding to assist persons who are institutionalized in state facilities, primary psychiatric hospitals, to move to the community. Funds can be used for temporary rental assistance, home renovations, household goods, training and orientation to caregivers, and other initial service costs not otherwise available. The first set of applications, received in May, resulted in grants for eight persons, with two denials. The process was reintroduced in September 2002.1057
(c) SYSTEMS CHANGE ACTIVITIES
West Virginia has a Nursing Facility Transition grant to assist nursing facility residents who wish to move to the community. Grant activities include conducting 100 assessments of nursing facility residents, training transition teams, identifying people who wish to move by educational and outreach activities, and creating a person-centered discharge and referral instrument.1058
(a) THE PLANNING PROCESS
In September 2000, in response to systemwide complaints filed with the HHS OCR and discussions with OCR, the Wisconsin Department of Health and Family Services (DHFS) designated the Wisconsin Council on Long Term Care as the state’s Olmstead planning body.1059 A 47-member ADA Title II Advisory Committee with broad representation from the aging, developmental disabilities, mental illness, veterans, and independent living movements was appointed and began meeting in January 2001. Consumers, providers, unions, county governments, and the Area Agencies on Aging were among the constituencies represented on the advisory committee. The organizations represented ranged from the AARP to ADAPT and People First. A representative of the Regional Office of Civil Rights attended the first meeting and subsequent meetings.1060
In the second meeting of the advisory committee, the group voted to focus first on people living in institutions who did not want to be there and only after that to address the issues of community waiting lists. It created four workgroups: Data, Legislation and Budget, Systems Design, and Client Evaluation.1061 Although advocates state they would have preferred the ADA Title II Advisory Committee to report directly to the governor, the Council on Long Term Care voted to keep the advisory committee in house.1062 The weakness of this approach is that the council, a unit within the DHFS, has limited ability to address barriers to community living, such as housing and transportation, that are beyond its jurisdiction.
Barriers to Olmstead planning soon surfaced in the workgroup discussions. The Client Evaluation and Assessment Workgroup learned that existing assessment tools were inadequate to identify persons who could handle and benefit from community living. Many of the currently used assessment tools focus on availability of community support rather than the appropriateness of community living.1063 The Research and Data Workgroup found that existing data were inadequate to estimate the number of people in nursing homes who wanted to move to the community or were appropriate for community living. The Consumer Task Force found it difficult to get adequate representation of consumers.1064
The plan for Phase I of the state’s Olmstead planning efforts was released in January 2002. The plan is designed to carry out six objectives:
- Ensure that consumer, families, and guardians are empowered to make informed choices about where to live.\
- Develop and apply consistent assessment and decisionmaking processes.\
- Develop capacity for a full range of long-term care services, including housing and workforce.\
- Provide sufficient funding.\
- Develop effective safeguards to ensure that Title II rights and preference of consumers are taken into account as much as possible in every phase of service delivery.\
- Exercise oversight according to Olmstead and Executive Order criteria.1065
Although initial plan activities focus on offering institutionalized persons a choice of where to live, the plan’s funding goal, Objective 4, as stated in the plan’s table of contents, projects that by July 1, 2007, all persons “who have not made an informed choice to stay in the institution” (emphasis added) and who “could be served appropriately and cost effectively in the community” will be relocated from institutions. Given the size of Wisconsin’s institutional populations, this is perhaps the most ambitious goal set forth in any state Olmstead plan to date; significantly, the goal is stated in appropriateOlmstead language. However, it is not developed in the body of the plan, and the proposed DHFS budget for 2003-2005 does not acknowledge it nor reflect even a token effort to implement the goal. A number of overlapping choice- and assessment-related activities are set forth in the plan. They include conducting a statistical sample of nursing facility residents to learn how many are interested in living somewhere else; restoring an independent advocacy program to assist consumers in the Family Care program (see infra, Systems Change Activities); amending state law to comply with Title II of the ADA and Olmstead; developing a model for arranging community services for hospitalized persons prior to discharge; and conducting mandatory pre-admission screening for people being admitted to institutions.1066
The plan’s capacity-building strategies are extremely general and constitute little more than a plan to plan. They include calls for coordination with state housing, transportation, workforce, public instruction, and vocational rehabilitation agencies, although these agencies were not at the table during the planning process.
(b) PROGRESS IN COMMUNITY INTEGRATION
In developmental disabilities, Wisconsin was a heavily institutional state at the beginning of the 1990s and remained so 10 years later, although institutional populations overall fell from 5,660 to 3,342. Wisconsin is unusual among the states in that more persons with developmental disabilities are institutionalized in private ICFs/MR (1,936 in 2000) than in other types of institutions, and the ICF/MR population has remained stable during the past 10 years. From 1990 to 2000, the population of Wisconsin’s state institutions was virtually halved and was 899 in 2000; the number of persons in general nursing facilities fell even more dramatically during this period, from 1,734 to 471.1067
Despite an active campaign by advocates and self-advocates to close at least two of Wisconsin’s three state institutions within five years (People First of Wisconsin has called for closure of all three institutions within 10 years),1068 the state’s goals for future deinstitutionalization of these persons are modest. The DHFS budget request released in September 2002 envisions reducing population of the three state institutions to 715 by the end of FY 2005. To accomplish this, the state proposes to raise the maximum reimbursement rate for community services to $325 a day to accommodate people with more significant disabilities and reports that many institutional residents could be supported much less expensively in the community, but their guardians oppose community placement.1069
Dane County, Wisconsin, was the birthplace of the model of community support teams pioneered by Dr. Leonard Stein, and the state now has 88 Assertive Community Treatment (ACT) programs serving 5,000 persons throughout the state. However, at the end of 2001, 200 persons institutionalized in state psychiatric facilities had been there for more than one year.1070
Consistent with its highly institutional profile in other areas, Wisconsin ranks eighth among the states in nursing facility use when measured as a percentage of the population as a whole age 65 and older. However, the state ranked almost equally high in reduction of nursing facility population from 1996 to 2001 (by 11.3 percent), although bed reduction was only about average (14.6 percent reduction).1071
(c) SYSTEMS CHANGE ACTIVITIES
Wisconsin began an extensive three-part strategic planning process in 1995 to redesign its long-term care systems for elders and persons with developmental and physical disabilities, people with mental illness and substance abuse, and children with significant disabilities. The principles on which the system redesign effort is based include consumer choice, improved access, cost-effectiveness, and quality measured in terms of consumer outcomes.
The most highly developed of the system redesign efforts is Family Care, created by Act 9 of 1999. Family Care is a managed long-term care program that combines state, federal, and local funding for community and institutional long-term care into a single capitated benefit, with the goal of eliminating institutional bias and streamlining fragmented and overlapping funding streams for services. An Aging and Disability Resource Center in each county piloting the Family Care model serves as a single point of entry for information, pre-admission counseling, and intake for long-term care programs. A Care Management Organization (CMO) is responsible for enrollment, assessment, care planning, and service delivery through a network of providers.1072 All CMOs are required to have self-directed services options in place by January 2003. By 2002, only five counties were piloting Family Care, although the state plans to expand the program gradually over the next 10 years.
Family Care is funded by a combination Section 1915 b/c waiver. In approving the waiver, the Centers for Medicare and Medicaid Services asked the state to avoid the potential for conflict of interest that would arise if the same entity (the county, in this case) were to be responsible for eligibility determination, enrollment, and service delivery. In response, the state introduced an independent enrollment broker.1073
An evaluation of the Family Care program by the Lewin Group, published in August 2001, found that waiting lists have virtually been eliminated in three of the five pilot counties and that the other two were well on their way. Self-directed service options were available only on a limited basis in three of the five counties. Counties expressed concern that the capitation rates did not adequately address the extensive administrative and information technology costs associated with Family Care. The evaluators concluded that it was too early in the process of implementation to determine whether reductions in nursing facility population could be attributed to the program.1074
DHFS is in the early stage of piloting a Mental Health/Substance Abuse Redesign model, the goal of which is to provide comprehensive consumer-based services in a managed care system. The managed care system has yet to be put in place, although some initial development of the model has occurred.1075
(a) THE PLANNING PROCESS
Wyoming has developed an outline of an Olmstead plan using the National Association of Protection and Advocacy Association’s Temple of Key Elements of an Olmstead plan. The outline therefore includes participation of key stakeholders in the development of the plan; the needs assessment process; the development of new community services and support infrastructure; transition services to prepare individuals for a change in placement; data collection individualized and tied to an individual program plan; outcomes measurement and target dates; quality assurance; resource development; and revision and updating. The plan contains a separate outline for each of four state agencies affected by the planning process: the Aging Division, the Developmental Disabilities Division, the Developmental Disabilities Division’s Acquired Brain Injury program, and the Mental Health Division.1076
The plan is basically a description of the existing service system. It does not set timelines or target dates. It does not identify how many persons are on waiting lists for community services or how many people currently are institutionalized who are eligible for services in community-based settings (although it does state that 4 of the 113 residents of Wyoming State Training School have been recommended for community placement and are slated to move). It also does not examine the adequacy of the state’s current reviews and assessment processes for reviewing institutional residents, nor does it establish similar procedures for persons who may be at risk of institutionalization.
The draft plan does not ensure that all institutional residents will be assessed to determine whether they can handle and benefit from community living. For example, the developmental disabilities section of the plan states that the agency will “continue monitoring of the progress of residents at the [Wyoming State Training School] and watch for possible candidates for transition.”1077 The Aging Services section of the plan states that assessing nursing facility residents’ potential for return to the community and ensuring that choice has been offered will be the responsibility of the provider and that the provider will validate Olmstead compliance to the state. Oversight will be accomplished via a Memorandum of Understanding between the Aging Division and the Office of Health Quality, the state survey system.1078 However, the plan does not explain how compliance will be ensured. The draft acknowledges, “[I]n many cases, there may not be a service network that can support a nursing home client in the community even though they may wish to live in a more integrated environment,”1079 but the plan does not squarely address how the gaps in needed services will be filled except to suggest that obtaining Medicaid funding for assisted living and securing enough additional waiver slots to eliminate the waiting list for home- and community-based waiver services should be considered as options.1080 According to the plan, the state recently had revised its Assisted Living Facility (ALF) regulations to allow residents of these facilities to obtain skilled nursing services and continue to live in the facility as long as the nursing services were obtained from an agency other than the ALF provider. The state reported that this regulatory change was undertaken to comply with Olmstead.1081
The plan contains only some highly general statements about the data systems and quality assurance mechanisms the state intends to adopt. For example, the Mental Health Division section of the plan states, “We will be developing ways to measure our progress on developing electronic systems to identify people who are institutionalized and are ready to move to a less restrictive placement”1082 without specifying how people who are unnecessarily institutionalized will be identified, how their needs and ability to benefit from community living will be assessed, who will do the assessments, or even whether all institutionalized persons would be considered.
The Acquired Brain Injury section of the plan is more thorough than other sections. It acknowledges the lack of information about the needs of persons with acquired brain injury in Wyoming and sets specific action steps and timelines for acquiring this information. It identifies barriers to service delivery and identifies long-term rehabilitation and community support for adults with severe and profound needs as the most critical gap in the system.
Almost simultaneously with the development of its draft Olmstead plan, Wyoming developed a plan for its mental health system, the Wyoming Public Mental Health System of Care Plan, which contains much more concrete and specific action steps. Unaccountably, there is little integration between this plan and the Olmstead plan.
For example, the Mental Health Division’s Olmstead plan states,
We have in development the building of a “transition profile” which will detail the community readiness of a person, which would be updated at every 90-day clinical review. As a part of the profiling assessment process, there will need to be developed, in the next six months, a form that would reflect the assessment of the readiness for the change in placement. This would essentially be a transition plan, which both the hospital and the residential providers for adults, and children and adolescents, would use. In year 1, the WSH would implement the process; in year 2, our contractors for extended psychiatric care would implement this process, and in year 3, all other contractors would implement the process.1083
However, the Public Mental Health plan does not mention this “transition profile.”
The Public Mental Health plan was “unveiled” in November 2000 and updated in 2001. It does not contain any goals or action steps specific to deinstitutionalization. However, it does identify gaps in community service systems and sets forth goals and action steps to improve the effectiveness of community services, for example, “to achieve public health modeled, integrated community-based services by CMHCs [community mental health centers],” which includes such action steps as incorporating Integrated Services language into contracts, negotiating methodology, and timelines for achieving integrated services with other agencies, training, and multiagency coordination.1084
(b) PROGRESS IN COMMUNITY INTEGRATION
As the result of a lawsuit, Weston v. Wyoming, brought in the late 1980s by the state Protection and Advocacy system to create community services for persons with significant developmental disabilities, the population of Wyoming’s only developmental disabilities institution fell from 311 in 1990 to 123 in 2000 and was 110 at the time the state’s Olmsteadplan was developed. In 2000, 40 persons with developmental disabilities lived in nursing facilities; this number had remained stable over the course of the previous decade. No one lived in private ICFs/MR of any size. During Weston implementation, the number of persons in small residential living arrangements in Wyoming increased dramatically, from 140 to 621.1085
The daily census at the state psychiatric facility, the Wyoming State Hospital, fell from 182 in 1992 to 63 in 2000, although its official capacity was 104.1086 The state legislature approved a plan to demolish old buildings at the facility and construct a new 40-bed facility on the same campus.1087 Funding for community services to targeted mental health populations has doubled since 1996.1088
A lawsuit filed in 1994 by the Wyoming Protection and Advocacy System and the Wyoming Alliance for the Mentally Ill (WYAMI), Chris S. v. Geringer, challenging conditions at Wyoming State Hospital and insufficient community-based services for adults, children, and adolescents, led to an agreement in 1995 to create a structure and a process in which advocates could participate in ongoing systems change. The structure, called the Partnership for the Resolution of Mental Health Issues in Wyoming, includes the director of the Department of Health, the executive director of the Protection and Advocacy System, a representative of WYAMI, and the administrator of the Division of Behavioral Health. Lawyers for the plaintiffs participate, as does a community mental health center director and ex-officio members from the Departments of Education and Family Services. A paid facilitator from the University of Iowa guides the discussion. The purpose of the Partnership is to monitor, discuss, and recommend systems changes that will bring closure to the lawsuit. Among the changes pursued by the partnership are services based on CASSP [Child and Adolescent Service System] principles for children and adolescents and a system of community support based on recovery principles.1089
In-Depth Analysis of Olmstead Implementation in Ten States
This chapter analyzes the experience of Olmstead planning and implementation in 10 states: Arizona, Florida, Illinois, Michigan, Mississippi, Nevada, New Hampshire, New York, Texas, and Washington. The states were selected to offer a representative sample both geographically and demographically. Before selecting the states, we compiled and analyzed census data as well as data on the number of persons in institutions, public psychiatric hospitals, and nursing facilities to identify a cross-section of states that would represent the diversity in the nation of population, size, and rates of institutionalization. The sample includes one New England state, one Mid-Atlantic state, two Midwestern states, two Northwestern states, two Southeastern states, and two Southwestern states.
(a) SELECTION CRITERIA
We based our selection on the following criteria for the sample as a whole:
- The sample should be representative geographically and demographically, that is, it should include large states, small states, states with significant urban populations, and states with significant rural populations.
- The sample should be representative in terms of overall ethnic diversity, that is, it should include states with and without significant populations of African-Americans, Latinos, and other minorities.
- The sample should represent states with diverse rates of institutionalization, both for particular disabilities and for all types of disability.
- The sample should represent a wide spectrum of state experience with community integration of people with disabilities.
(b) RATIONALE FOR SELECTION OF THE 10 STATES
Washington is a medium-size state with higher percentages of white residents, Native American residents, and Asian residents than the nation as a whole. From 1988 to 1998, the number of persons with developmental disabilities in large congregate settings decreased from 3,176 to 2,388, whereas the number of persons in small community residential settings increased from 1,511 to 8,764, a nearly six-fold gain. The number of persons with developmental disabilities in nursing facilities increased.
Nevada is a small but fast-growing state, primarily urban. Its Latino and Native American populations are larger and its African-American population smaller than the United States as a whole. In MR/DD services between 1988 and 1998 the number of persons in large congregate settings (state institutions, private institutions, and nursing facilities) actually increased, and Nevada pursued a policy of expanding ICF/MR services at a time when most states were expanding home- and community-based waiver services. Nevada had the lowest rate of nursing facility placement of persons 65 and older in the United States1090 until the legislature approved 1,800 new nursing facility beds in 1997.
Arizona is a small, largely urban state with a large Latino minority. In MR/DD services, Arizona more than doubled the number of persons served in community residential services between 1988 and 1998 and reduced the population of state institutions by more than half. Of the 19,515 elderly and physically disabled persons enrolled in Arizona’s Medicaid-funded long-term care system, about half (9,953) live in nursing facilities. The average daily census of the Arizona State Hospital for persons with psychiatric disabilities was 157 in 1999.
Texas is a large state with a high percentage of Latinos and high rates of institutionalization. In MR/DD services, the percentage of persons in institutions declined by only 25 percent between 1988 and 1998, from 13,851 to 10,452. More than 1,200 children, some of them only a few months old, are still living in institutions. In 1998, the state served 7,634 persons with developmental disabilities in small community residential settings, significantly fewer than the number in large congregate settings, although this is certainly a significant increase from 1991, when the figure was zero. As of September 1, 2000, 66,200 Texans lived in nursing facilities, and the average daily census of state psychiatric institutions was 2,350.
Illinois is a large, heavily urban state with a race and ethnic mix similar to that of the United States population as a whole. In sharp contrast to Michigan, the level of institutionalization is high.
Michigan is a large industrial state with a mix of urban and rural population, a slightly higher percentage of white residents than the national norm, and a high percentage of persons with disabilities living in the community. In the developmental disabilities field, state government played an innovative role in the transformation of services from the late 1960s, when more than 12,000 persons lived in state institutions, to the present, when fewer than 300 persons with developmental disabilities remain in state institutions. Michigan’s system of cash grants to families is widely recognized as a successful model of preventing out-of-home placement for children. In mental health, the population of state institutions has declined from higher than 17,000 in state facilities in the mid-1960s to approximately 1,100 today. Since 1990, the state has closed 17 state mental health institutions.1091
Though Michigan’s nursing facility population has remained constant for the past several years, the state does provide innovative, consumer-directed services to a large number of elders and persons with physical disabilities in two large Medicaid home and community services programs and several small state-funded programs. Approximately 14,400 persons receive services through the MI Choice Waiver for the Elderly and Disabled, which provides a range of home care agency-based services to people who would otherwise be eligible for nursing home care. The Medicaid Home Help program is funded through the Medicaid personal care option and covers personal care services using a consumer-directed model in which about 84 percent of all beneficiaries hire and fire individual workers directly, and 51 percent of all beneficiaries hire workers who are relatives. For Home Help, beneficiaries do not need to be functionally eligible for nursing home services. The program had an average monthly census of 37,200 people in fiscal year 2000. In 2001, the Michigan Department of Community Health (MDCH) created a Long-Term Care Initiative that coordinates all long-term care programs serving older persons and younger adults with physical disabilities, including the Medicaid MI Choice waiver and the Home Help program.1092
Mississippi is a poor, largely rural state with the highest percentage of African Americans among its population of any of the 50 states; only the District of Columbia is higher. Mississippi’s Medicaid-funded services are heavily institutional. The state is last in the nation in the percentage of Medicaid long-term care funds devoted to community-based services (only 4.4 percent). Between 1988 and 1998, the number of persons with developmental disabilities living in large congregate facilities in Mississippi increased from 2,382 to 2,830. In 1998, the state served only 1,682 persons with developmental disabilities in small community residential settings, but this is certainly a significant increase from 1991, when the figure was zero. Mississippi offers few services for elders and persons with physical disabilities other than nursing facility care. The proportion of long-term care spending for the elderly for nursing facilities is the highest in the nation (98.6 percent), yet in 1997, the legislature approved 1,500 new nursing facility beds. Spending per elderly beneficiary for long-term care is the lowest in the nation ($3,593).
Florida is a large state with the largest percentage of elderly residents in the nation and a Latino population that is significantly larger than that of the United States as a whole. Institutional populations in Florida are large. There are currently seven state mental health facilities (one is scheduled to close soon) in which about 4,300 persons are served annually. Approximately 138,000 Floridians (roughly 5 percent of the population age 65 and older) live in nursing facilities.1093 In 1998, 3,533 Floridians with developmental disabilities lived in large congregate settings, including state institutions, large private ICFs/MR, and nursing facilities. It was not until 1995 that the number of persons with developmental disabilities living in small community residences surpassed the number living in institutions.
New York is a large state with a mix of urban and rural populations and differences in rates of institutionalization by type of disability. Its population is reasonably comparable to that of the nation as a whole in race and ethnic mix. New York has a fairly strong record of integrating people with developmental disabilities into community services but a weak record of serving people with psychiatric disabilities in the community.
New England States
New Hampshire is a small state with a high percentage of its population living in rural areas. By ethnicity, New Hampshire is 96 percent white. A high percentage (more than 90 percent) of persons with developmental disabilities are living in settings of 15 or fewer people. New Hampshire closed its single state institution for persons with developmental disabilities in 1991 and has adopted the self-determination model of services for persons with developmental disabilities throughout the state.
(a) STATE OF COMMUNITY SERVICES PRIOR TO DEVELOPMENT OF AN OLMSTEAD PLAN
Washington reflects national trends in both the use of institutions and the trend toward community services. In many categories, it has fallen squarely within the middle range of the states in terms of its rates of institutionalization and community integration. This means that, like the nation, Washington has made progress but still has a long way to go.
Overall, in 1997, 19,364 people participated in Washington’s combined home- and community-based waiver programs for a rate of 3.45 people per 1,000.1094 This rate exceeds the national mean of 2.1 people and is higher than all but 11 states. Washington, like most states, had a higher rate of participation in its ICFs/MR and nursing homes, at 4.23 people per 1,000. This was below the national mean of 6.51 people.1095 Washington’s per capita waiver spending in 1997-98 was also neither the nation’s stingiest nor its most generous: $37.96, above the national average of $29.40.1096 Washington reported three funded waiver programs in 2001. The vast majority of spending was under the MR/DD waiver ($227.3 million) and the Adults with Disabilities waiver ($287.7 million).1097 A smaller program ($1.6 million) covers persons with AIDS.1098 At $516.6 million, Washington’s total waiver spending is fairly high, exceeding larger states, such as Ohio ($480 million) and Illinois ($348 million).1099 Washington, unlike most states, has a larger Adults with Disabilities waiver program for people with physical disabilities than its MR/DD waiver program. In part, this is because Washington combines services for the elderly with disabilities under its Adults with Disabilities waiver instead of administering a separate aging waiver, but Washington still stands out as dedicating more funds to people with physical disabilities. By contrast, New York, with a waiver in excess of $2 billion, dedicates nearly all of it-$1.98 billion-to its MR/DD waiver, with only $26 million to its Adults with Disabilities waiver.1100 Of New Jersey’s $326 million in waiver spending, nearly 72 percent-$234 million-is dedicated to the MR/DD waiver, with $58 million for adults with disabilities.1101 Despite such funding, community care providers still reported low rates of Medicaid reimbursement. Nonagency personal attendant care providers’ salaries were raised in July 2000 to $7.18 per hour, still lower than the prevailing wage for fast food workers or van drivers in Seattle.1102
(b) DEVELOPMENTAL DISABILITIES
In 2000, Washington reported serving 12,167 people with developmental disabilities in residential, out-of-home settings. Of these, 9,609, or 79 percent, lived in settings of six or fewer people.1103 This number exceeds the national average of 61 percent. Washington ranked 16th among the states in the percentage of citizens with developmental disabilities in such settings.1104 Washington also reported housing 2,089 people in institutions of 16 or more people, also below the national average of 27 percent.1105 A little more than half these residents-1,138-are in state institutions.1106 Washington has 20 state institutional placements per 100,000 people, placing it in the middle of the states in terms of the rate of institutionalization. (Mississippi has the highest rate, at 49; seven states tied for the lowest rate, with no state institution placements; and the national rate is 17.)1107 Another 659 of these residents lived in nursing homes-a two percent increase (from 646) from 1996.1108 Washington’s rate of 11 DD nursing home placements per 100,000 people is again in the middle of the national range. (The highest is Oklahoma, at 36; Alaska, Arizona, and Florida tied for lowest, at one; and the national rate is 13.)1109 Washington reported 1,096 ICF/MR beds in eight facilities in 1998, a decrease from 1,907 beds in 1989.1110 In 2000, Washington reported 948 people living in ICF/MR placements, or 16 per 100,000 people, ranking Washington 38th among the states in ICF placement.1111
In spending for developmental disabilities, Washington ranked 33rd in its total per capita spending on the Home- and Community-Based Waiver program in 2000.1112 It reported the home- and community-based services waiver covered 35 percent of its total spending-again, nearly the national average of 33 percent.1113 In 2000, Washington had nearly $50 million in state funds unmatched by federal home- and community-based services waiver funds, or 9 percent of its total spending.1114
Washington has a supported living program for people with developmental disabilities that exceeds other states in terms of size and expenditures.1115 This is significant because many self-advocates have reported that individualized, supportive living settings, not group homes, are the “most integrated setting” for people with developmental disabilities. Washington reported spending approximately $125.5 million for 3,713 participants.1116 Only four states-California, Iowa, Ohio, and Pennsylvania-had more participants.1117 Washington spent almost as much on its supported living program as California (which spent about $5 million more), but California’s program has more than four times more participants. Indeed, besides California, only Ohio spent more on supported living.1118
Washington’s DD advocates reported problems with Senate Bill 6751, a law that passed approximately five years ago. Designed to guarantee choice between ICF/MR facilities and community services, one advocate reported the state maintained empty ICF/MR beds to guarantee the “choice” in the law.1119 However, another reported that the Center for Medicare and Medicaid Services (CMS) found the law violated the entitlement to ICF services because the law did not allow placement in ICF/MR services when community options were unavailable, and thus no “choice” was offered.1120
(c) ELDERS AND ADULTS WITH DISABILITIES
During the 1990s, Washington bucked the national trend by decreasing the number of nursing home beds, although only gradually and with significant fluctuations. In 1989, Washington had 296 nursing homes, which decreased to 285 by 1998.1121 Beds decreased from 28,636 in 1989 to 27,204 in 1998, a 4.42 percent decrease.1122 Still, nationally, the number of beds increased by 12.18 percent for the same period.1123 Average occupancy rates were not available.1124However, beginning in mid-1999, the decline in Medicaid nursing home use leveled off and is now running above the level projected in the state budget.1125
Reports on Washington’s nursing home services noted that the move to more cost-effective, community-based alternative services accelerated after 1994, when voters enacted Initiative 601, which limited the annual growth of state expenditures to the combined rate of population growth and inflation. Both were fairly low throughout the 1990s, leading to a decline in state funds. Another initiative, passed in 1999, sharply cut the state’s motor vehicle tax. Coinciding with these tax cuts, the state made a “concerted effort” to divert and relocate nursing facility residents.1126 The result was a significant drop in Medicaid nursing home use, from 17,448 residents in 1993 to 13,789 in 2000.1127 Despite the dramatic reduction, it has been estimated that one-third of them do not need a skilled nursing facility level of care.1128
The strategies used by the state to reduce the nursing facility population are instructive. Beginning in 1995, each of the state’s six regions had an annual reduction target for nursing facility caseloads. The state compiled monthly statistics to track trends targets. Case managers were assigned to specific nursing facilities and their responsibilities were limited to assessing and working with clients to be relocated. Within seven days of entering a nursing facility, a resident receives a comprehensive functional assessment using an instrument developed by the state to determine eligibility for all residential settings. The case manager then determines whether the resident should be classified as an “active relocation client.” If so, discussions with the resident about community-based options and preferences begin within two weeks, a time frame that ensures that the community placement process will begin before the person begins functionally and emotionally to deteriorate.1129
In addition to an assertive approach to community placement, case managers in Washington have a flexible pot of money available to facilitate nursing home transition from an unusual source-fine monies levied against nursing facilities for violations of licensing standards. Fine monies are placed in a Civil Penalty Fund and can be used to fund security deposits, utilities, furniture, home modifications, and other housing costs. Case managers have significant flexibility in the use of these funds.1130
According to a study of services for elders and adults with physical disabilities in Washington, the state “is among the nation’s leaders in using consumer-directed care and nonmedical residential services, such as adult family homes and assisted living.”1131 Washington relies almost entirely on Medicaid personal care and home- and community-based services waivers as the source of financing for its noninstitutional services. This means that persons receiving publicly funded services must meet a nursing home level of care in a system that is not necessarily designed to address significant medical and nursing needs. The state has recognized this and is developing a number of strategies to strengthen the medical component of its system, including allowing more nursing visits and increasing reimbursement for nursing visits.1132 In addition, the low wages of personal assistants and the tight labor market in Washington, particularly in the Seattle area, has created a crisis in which the system is “starved for resources.”1133
(d) MENTAL ILLNESS
In 2001, Washington maintained about 1,090 beds in three state psychiatric hospitals. A total of 2,825 persons, 257 of them under the age of 21, were institutionalized in Washington’s three state psychiatric hospitals during the course of the same year. Approximately 60 percent were in the hospital pursuant to an involuntary civil commitment; another 30 percent were subject to an involuntary criminal commitment; and only 10 percent resided in the institution under a voluntary commitment. A total of 340 persons, including 46 under age 21, had been institutionalized for more than a year.1134 The state has no plans to close any of the three state hospitals.1135
Washington finances its community-based mental health services, the Integrated Community Mental Health Program, through a full carve-out, stand-alone mental health and substance abuse Section 1915(b) waiver combined with Title XX block grant and state funds.1136 The state’s mental health program is administered by the Mental Health Division (MHD) of Department of Social and Health Services (DSHS), through contracts with 14 county-based Regional Service Networks (RSNs) which serve as Prepaid Health Plans and in turn contract with Community Mental Health Centers for service delivery. About 106,000 persons received some form of behavioral health services through this managed care system.1137The RSNs are designated by state statute as the single point of entry for service delivery.1138 Informants suggest that the RSNs have considerable discretion in the mix of community mental health services they offer. They may provide consumer-operated services but are not required to do so.
A 1999 performance audit of Washington’s public mental health system conducted by the state’s Joint Legislative Audit and Review Committee (JLARC) found that services were insufficiently coordinated among DSHS’s MHD and its other divisions, including the Division of Developmental Disabilities (DDD), the Division of Alcohol and Substance Abuse (DASA), and the Aging and Adult Services Administration (AASA), and between the state mental hospitals and the RSNs. The study found that almost no information is collected on a statewide basis on client or system outcomes and the capitated funding to the RSNs contained wide disparities in resource allocation to RSNs and services provided to consumers that were not correlated with differences in the prevalence of mental illness, the severity of disabilities of the persons served, or cost differences among the RSNs.1139