Part 1 Summary: NCD Medicaid Managed Care Forums
National Council on Disability Medicaid Managed Care Forums:
Part 1 Summary – October 30, 2014
The National Council on Disability (NCD) has a long history of support and engagement regarding the issue of Medicaid managed care (MMC). NCD articulated its findings on this topic in its 2012 publications entitled MMC Guiding Principles,[](https://ncd.gov/publications/2014/11042014#endnote1)and Analysis and Recommendations,[](https://ncd.gov/publications/2014/11042014#endnote2) and the 2013 report, Medicaid Managed Care for People with Disabilities.[](https://ncd.gov/publications/2014/11042014#endnote3)
During fiscal year 2014, NCD collaborated with federal agency representatives, disability leaders, and other stakeholders to obtain input in planning and implementation of Medicaid managed care services through a series of five community forums. Forums were held between December 2013 and June 2014 in Topeka, KS; Tallahassee, FL; Chicago, IL; Sacramento, CA; and New York, NY. Based on these community forum discussions, ensuring that effective Medicaid managed care plans are developed and implemented will require strong partnerships among stakeholders—federal and state governments, disability leadership representatives, self-advocates, family organizations, health plans, and providers.
NCD accomplished its stated objectives during the forums. The forum structure featured a facilitated discussion of experiences, preferences and desired outcomes for Medicaid managed care as described by disability leaders, self-advocates, family members, federal and state agency representatives, health plans, and providers. NCD promoted the MMC Guiding Principles (see Endnote 1) and heard stakeholder views on promising or best practices that should be planned and implemented in Medicaid managed care programs.
Nationally, over $415.15 billion (federal and state funding) is spent on services for 66 million Medicaid recipients.[](https://ncd.gov/publications/2014/11042014#endnote4) The magnitude of the program that serves many of the most vulnerable individuals demands a high level of accountability – from federal and state governments, providers, enrollees and other stakeholders. Most states that are implementing, or planning to implement managed care for their Medicaid programs enroll senior citizens, people with disabilities, and children with specialized medical needs in these programs. Increasing numbers of states are also offering dental care, behavioral health care, transportation, and pharmacy services as part of their Medicaid programs.
As states move to expand Medicaid managed care to include more individuals with disabilities than in the past, it will be essential that the new delivery systems are structured to preserve the principles of Home and Community Based Services (HCBS).[](https://ncd.gov/publications/2014/11042014#endnote5) These principles include the emphasis on choice and consumer-driven care and services, the demonstration of real progress in developing community-based infrastructure, and the active promotion of community-based alternatives.
The Centers for Medicare and Medicaid Services (CMS) within the U.S. Department of Health and Human Services is in the process of drafting a sweeping new rule to be released by the end of 2014. This rule will update Medicaid managed care regulations.[](https://ncd.gov/publications/2014/11042014#endnote6) New guidelines are necessary since most of the existing rules were drafted in 1998 and reflect an outdated interpretation of what managed Medicaid should and can accomplish. The new regulations must recognize, include, and address: (1) the increased number of beneficiaries which include people with significant disabilities under Medicaid managed care; (2) the impact of the Affordable Care Act (ACA); (3) how to weave together relevant provisions of major laws that have been passed in the last decade, including the Children’s Health Insurance Program (CHIP) provisions of the ACA; and (4) more robust beneficiary protection language than the previous regulations governing Medicaid managed care.
NCD recognizes that managed care can create a pathway to higher quality services and more predictable costs; however, service delivery policies should be well-designed and effectively implemented to avoid adverse impacts on the needs of individuals with disabilities. NCD’s managed care forums provided valuable insights toward the goal of effective policy design and implementation.
NCD’s five Medicaid managed care forums served as part one of the agency’s two part plan for information gathering. The primary goals of the forums were to facilitate dialogue among diverse stakeholders and to encourage participants to engage in a more structured process than generally occurred at the state level for ongoing stakeholder collaboration. During the proceedings, NCD noted (?) several general findings that affect the providers and potential service beneficiaries First, the forum participants expressed their universal concern about experiencing the disjointed and rapid pace of Medicaid managed care expansion. Secondly, the forum presentations and stakeholder input clearly emphasized the states’ current financial and organizational struggle in balancing the maintenance of existing efforts while meeting new requirements, including the coordination with a multitude of federal efforts. Third and finally, the challenges and concerns for every state became magnified during the 2013-2014 period of historic change for the traditional Medicaid program and for the broader public health care system.
Disability stakeholders within the forum states identified important concerns .Available data and findings from the forums support NCD’s position that now is the critical time to examine the approaches to Medicaid managed care and medical care in general. Issues were identified which need to be addressed by Congress, CMS, other federal agencies, and state entities. The intent of the NCD findings and recommendations generally include: (1) protection of people with disabilities from adverse unintended consequences of Medicaid managed care programs and processes; (2) improvements applicable to the general design and implementation of the program at the state level and across all populations who utilize Managed Long-Term Services and Supports (MLTSS); and (3) potential federal Medicaid managed care policy directives to the states.
Summary of NCD Findings (Part 1: KS, FL, IL, CA. NY Forums)
Protection and Advocacy Needs – Forum attendees expressed the need for access to specialized health advocates to assist in managing the complex nature of Medicaid managed care and the comprehensive needs among of individuals with disabilities, advocates, stakeholders, beneficiaries, and providers. Health advocates would serve as “boots on the ground” to ensure that managed care systems comply with federal law and work with the states’ Medical Care Advisory Committees to obtain and publicize information about managed care.
Stakeholder engagement - The CMS May 2013 technical assistance document, Timeline for Developing a Managed Long Term Services and Supports Program,[](https://ncd.gov/publications/2014/11042014#endnote7) states: “Continuous engagement of stakeholders is critical to success. This includes stakeholders external to State governments, such as beneficiaries who use Long-term Services and Supports (LTSS), advocates, LTSS providers, and those internal to State government, including aging and disability agencies, the insurance oversight agency, the Governor’s Office and the Legislature.”
Consistent with this statement, the advisory councils either at the State or managed care planning level must include stakeholders from each of the relevant categories. Across the NCD forums, stakeholders—especially people with disabilities and advocacy organizations familiar with disability needs and issues—repeatedly told NCD about the lack of opportunities for such involvement. People with disabilities shared their desire and need to be included during the discussion and planning phase of managed care, rather than being subjected to programs and processes that may cause an adverse effect on their lives.
Many traditional managed care organizations lack experience with the Medicaid population, which includes people with disabilities who also have low-incomes and complex health and social needs. This lack of experience makes direct involvement of people with disabilities and other advocates critical. Funding associated with participation in planning, evaluation, and governance activities at local and state levels must be made available to meaningfully involve consumers, family members, and their advocates. Consumers and their advocates bring grounded knowledge about health and social needs of people with disabilities and the effective solutions to address these needs, including what is culturally, linguistically, and disability sensitive.
State Models of Medicaid Managed Care Plans - State plans should provide staff support and stipends for time and transportation to help consumer and advocate participation. Federal regulations require Medicaid programs to provide Medicaid Medical Care Advisory Committees with “staff assistance from the agency and independent technical assistance” as well as “financial arrangements, if necessary, to make possible the participation of recipient members.”[](https://ncd.gov/publications/2014/11042014#endnote8) This requirement for support goes beyond federal requirements for public hearings and comment periods on federal waivers and demonstration projects.
Several States are already employing best practice consumer engagement strategies.[](https://ncd.gov/publications/2014/11042014#endnote9)
- Wisconsin requires one-quarter of each managed care organization (MCO) board in its Family Care program to be Medicaid beneficiaries or their advocates.
- Massachusetts requires at least one consumer on the board of each MCO in its Senior Care Options program. It also requires each MCO to have a separate consumer advisory committee to help guide its new duals demonstration for people with disabilities. The state has also proposed an implementation council with at least 51 percent consumer representation.
- In Arizona, New Mexico, New York and Tennessee, regulations or contracts require MCOs to establish member councils or to include consumers on advisory committees in their LTSS plans.
- North Carolina requires its non-profit management agencies to provide support to a Consumer and Family Advisory Committee.
Ombudsman Needs – CMS does not require the establishment of an ombudsman in order to receive waiver approval for Medicaid managed care. Since the programs are state-initiated, there is no uniformity among the states in ombudsman functions or operations State systems vary widely in their Medicaid managed care enrollee complaint receipt practices.
Established best practices indicate that the state ombudsman programs overseeing the Medicaid managed care program should be located outside of any agency that administers or manages Medicaid services. Advocates expressed the need for an independent ombudsman office which they perceive as having greater degree of autonomy than currently exhibited. However, this autonomy cannot be equated with less authority to resolve problems. The independent ombudsman must have the authority to take action to resolve issues.
Forum attendees emphasized that information gathered through the ombudsman program must be relayed directly to the Medicaid office’s contract management and oversight departments. This information is in addition to the information to that is obtained by monitoring the formal hearings or the MCO complaint process. In this function, the ombudsman program not only assists beneficiaries resolve their issues, but also supports state monitoring of the MCOs. Grievances and complaints, whether lodged formally or informally, can serve as an early warning system and highlight flaws in the design of the overall system.
Several state practices reveal how ombudsman programs should operate.[](https://ncd.gov/publications/2014/11042014#endnote10)
- Wisconsin consumer advocates pressed for an ombudsman when their state proposed to expand managed LTSS in 2006. The state enhanced the role of its federally required institutional long-term-care ombudsman to include complaints from people 60 and older receiving community based services. In addition, the state contracted with Disability Rights Wisconsin to operate an ombudsman program for people 18 to 59 getting Medicaid LTSS. Disability ombudsmen across the state handle individual cases while a program manager identifies systemic problems in Medicaid LTSS.
- Hawaii contracts with a non-profit advocacy organization to serve as ombudsman for its managed care programs.
- New York is proposing an ombudsman program modeled on the Wisconsin program to serve its managed LTSS and duals demonstration programs.
Constitutional Due Process - Due process problems arise when Medicaid-covered services are subject to prior authorization. All Medicaid beneficiaries, including those enrolled in managed care plans, are entitled to written notice and an opportunity for a hearing before an adverse action is taken against them. The problem is becoming even more critical as increasing numbers of people with disabling and chronic conditions are having their services subjected to prior authorization.
Beneficiaries are frequently subjected to termination if the authorization period (usually 60-90 days) ends while the individual’s appeal is pending and due process protections Ignored. Letters to state Medicaid directors, webinars, on-site training, and audits are all needed to remind MCOs of the requirements of the Constitutional Due Process mandates and CMS must clearly emphasize to states the expectation that authorized LTSS services continue pending appeal.
Need for Americans with Disabilities Act (ADA) compliance plan guidance - People with disabilities cannot derive a full and equal benefit from publicly funded health insurance unless health plans comply with the ADA and Section 504 of the Rehabilitation Act of 1973. Limited access and health disparities are an inevitable result of failure to ensure programmatic accessibility. An analysis completed by the Center for Independence of the Disabled New York (CIDNY) found that managed care plans were out of compliance with ADA requirements.[](https://ncd.gov/publications/2014/11042014#endnote11) NCD heard similar complaints during the Medicaid Managed Care forums in Illinois, California and New York.
CMS has the responsibility to provide guidance to the states on ADA compliance to ensure that Medicaid health plans identify barriers to care and provide reasonable accommodations and full programmatic accessibility. CMS should work together with individuals with disabilities to develop a model ADA compliance manual. The guidance must include managed care plan requirements such as:
- Identify enrollees with disabilities in order to provide reasonable accommodations that are necessary to avoid discrimination.
- Give notice of how disability is defined with examples of disabilities that include functional limitations (e.g. trouble standing, ongoing sadness, difficulty with reading).
- Let people know what kinds of accommodations are available (providing examples that are nonexclusive).
- Ensure that personnel are trained to provide accommodations.
- Include a network of providers with accessible practices.
CMS must direct states to:
- Assign responsibility for compliance activities within their Medicaid agencies, including regularly updating ADA compliance guidelines that contain clear and detailed guidance on baselines for compliance; a model compliance plan; and member handbook language.
- Provide or require plans to obtain training for grievance and appeal personnel, member services personnel, case managers and other relevant personnel to receive training on the ADA, compliance plan requirements and disability literacy.
- Have adequate personnel review ADA compliance plans, issue statements of deficiency and review and approve plans of correction with clear timelines for compliance, provide or arrange for technical assistance, and test compliance with ADA compliance plan provisions.
- Report to CMS and the public on progress towards ADA compliance in the managed long-term care program.
- Require MCOs to develop a brochure for enrollees regarding ADA rights in managed care that is distributed upon enrollment.
Transparency and Accountability – The requirement that health insurers spend at least 80 percent of premiums on medical claims or quality improvements was added to the ACA. The medical loss ratio (MLR) has been hailed by ACA supporters for providing consumers with nearly $2 billion in rebates from health insurers who did not meet the spending ratio, and they argue it has also led to lower premiums as insurers cut administrative costs to meet it.[](https://ncd.gov/publications/2014/11042014#endnote12) The ACA, however, did not require a MLR standard for Medicaid plans.
Senate Commerce Committee Chairman Jay Rockefeller (D-W. VA) has called for imposing a similar requirement on Medicaid managed care plans, introducing legislation in December 2013 (S. 1787) that would require plans that contract with state Medicaid agencies to meet a MLR standard. Rockefeller’s legislation is of particular importance because about half of all Medicaid beneficiaries, around 27 million people, are enrolled in comprehensive, capitated MCOs, and over half of these Medicaid beneficiaries are in for-profit plans. Furthermore states are expected to rely heavily on MCOs to serve the 16 million additional Americans projected to gain Medicaid coverage by 2019 under the ACA.[](https://ncd.gov/publications/2014/11042014#endnote13)
In 2011, CMS required an 85 percent MLR as a condition of Florida’s waiver extension agreement, the first time the federal government has made MLR a requirement for waiver approval. The MCOs operating in Florida must provide documentation to the state and CMS to show ongoing compliance with 85 percent MLR. This action by CMS suggests that an MLR standard in Medicaid could become a federal requirement as states seek to move more and more Medicaid beneficiaries into managed care on a mandatory basis.
Related to the issue of MLR is the move towards more financial accountability and transparency regarding the Medicaid dollars paid to MCOs. Congress is currently considering legislation to require annual audits of these programs. CMS does not require states to audit managed care payments. The General Accounting Office (GAO) in a recent report expressed its concern regarding this issue. “GAO recommends that CMS increase its oversight of program integrity efforts by requiring states to audit payments to and by MCOs; updating its guidance on Medicaid managed care program integrity; and providing states additional support for managed care oversight, such as audit assistance from existing contractors.”[](https://ncd.gov/publications/2014/11042014#endnote14)
Some states, such as Georgia and Texas, have already established comprehensive monitoring programs; and others require audits conducted by independent auditors.[](https://ncd.gov/publications/2014/11042014#endnote15)
Home and Community Based Care - NCD’s 2012 Medicaid managed care Guiding Principles document suggests: “States planning to enroll recipients of long-term services and supports in managed care plans should be required by CMS to include providers of institutional programs as well as providers of home and community-based supports within the plan’s scope of services. This requirement should be built into the terms and conditions governing waiver approvals.”[](https://ncd.gov/publications/2014/11042014#endnote16)
Participants in the forums shared perspectives on the “carve-out” for institutional settings for people with intellectual and development disabilities (I/DD), which was allowed by CMS in the Kansas waiver. Accordingly, NCD heard that such action creates harmful incentives for MCOs and diminishes the ability of the managed care framework to enhance quality and control costs. There is no programmatic rationale for the exclusion of the lowest quality, highest cost service from the managed care framework. For example, one of the points of contention in discussions on the Kansas managed care contract is that the state has decided to exclude public intermediate care facilities from the risk pool of who is going into managed care. The concern is that this exclusion may create perverse incentives for MCO’s to shift people into those settings rather than keep or transition people into other homes and/or community options. For example, progress in providing HCBS for people with physical disabilities and mental illnesses has lagged far behind efforts for individuals with intellectual and developmental disabilities. Studies show that (a) from 2000 to 2007, nursing home use increased among adults age 31 to 65 in 48 states; (b) nationwide, the proportion of nursing home residents younger than 65 increased from 12.9 percent in 2005 to 14.2 percent in 2009 and (c) Current data shows that there are still more than 200,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.[](https://ncd.gov/publications/2014/11042014#endnote17)
The U.S. Senate Committee on Health, Education, Labor and Pensions report on the failure of states to carry out several aspects of community living during 14 years since ADA enactment was released in July 2013.[](https://ncd.gov/publications/2014/11042014#endnote18) The report included recommendations that should be considered by Congress and CMS for implementing Medicaid managed care to benefit people with disabilities. These recommendations include:
- Congress should amend the ADA to clarify and strengthen the law’s integration mandate in a manner that accelerates Olmstead implementation and clarifies that every individual who is eligible for LTSS under Medicaid has a federally protected right to a real choice in how they receive services and supports.
- Congress should amend the Medicaid statute to end the institutional bias in the Medicaid program by requiring every state that participates in the program to pay for HCBS, just as every state is required to pay for nursing homes, for those who are eligible.
- Congress should require clear and uniform annual reporting of the number of individuals served in the community and in institutions, together with the number of individuals transitioned and the type of HCBS living situation into which they are transitioned.
- Congress should require incremental state spending goals for national Medicaid LTSS for 2015, 2020, and 2025 to ensure that the proportion of spending on HCBS continues to increase. Congress should increase the federal share of Medicaid expenditures for states that achieve these benchmarks and reduce the federal share for states that do not.[](https://ncd.gov/publications/2014/11042014#endnote19)
Also at the federal level, CMS must continue to put a strong focus on bringing the culture of community based long term care into managed care so it remains very person-directed and it not only focuses on housing, but also employment and other opportunities for individuals.
Under the ACA, the federal government gave states significant new options to provide community based services to people living in the community with chronic or disabling conditions. The first new opportunity (effective since 2011)[](https://ncd.gov/publications/2014/11042014#endnote20) is the Community First Choice 1915 (k) – a new benefit under the state plan that supports community attendant care for people who receive an institutional level of care with an enhanced federal matching rate of six percent.[](https://ncd.gov/publications/2014/11042014#endnote21)
MCO Care Coordinators and Network Adequacy – States should engage in more intensive case management and should be required to indicate how current networks will provide the necessary services to populations such as individuals with Intellectual Disabilities.
Some forum commenters said that states should be required to indicate in their waivers the protections put in place to ensure people with disabilities will be able to retain access to their existing targeted case managers after the transition to managed care. Ratios for care coordination for the MCOs should be established. For example, a ratio of 1:40 might be considered for serving people with intellectual disabilities. CMS should evaluate carefully coordination for other populations and consider appropriate maximum ratios.
Forum participants told NCD that network adequacy is related to the issue of ratios of care coordinators. Existing federal law requires that Medicaid managed care plans have adequate provider networks to ensure access to services. ; But, additional rules may be needed to help provide enrollees with real access to care. CMS should require MCOs to provide states quarterly reports that include the number, location, type, and current capacity of providers who are contracting with plans. This data must be accessible both online and in print so that consumers can be made aware of any problems and compare and contrast plan performance. Additionally, this information should be conveyed in a manner that is easily understood and accessible to people with low literacy, limited English proficiency, and disabilities. This level of transparency is critical to ensuring that Medicaid plans are held accountable for providing access to all services for all individuals.
The major push to expand managed LTSS in Medicaid across the country provides opportunities to expand home and community based services; integrate LTSS with medical and mental health care, and increase quality and efficiency of services. Implementation could improve the lives of seniors and people with disabilities under Medicaid. In the long-term, increased efficiency and the shift to community based care might slow growth in Medicaid spending and therefore help avoid programmatic cuts. However, a rush toward short-term savings or profits could jeopardize services that are essential to help seniors and people with disabilities to live dignified and independent lives as active community participants. CMS has an opportunity during the rule revision process to draw on promising state practices and policy recommendations from experts, including people with disabilities, and to minimize risks and maximize the benefits of Medicaid managed care. The findings above and these recommendations complete this paper for dissemination to forum participants and the public for consideration and action.
Recommendations to the States
- States should provide financial support for stakeholder engagement to assist in the construction and development of Medicaid managed care plans at the inception and support ongoing consumer engagement and feedback.
- States should provide adequate funding for an independent Ombudsman’s office.
- States should establish a clear mechanism for monitoring managed care organization compliance with Due Process requirements.
Recommendations to CMS
- CMS should provide funding to the states and direct them to provide financial support for stakeholder engagement to assist in the construction and development of Medicaid managed care plans at the inception and ongoing consumer engagement and feedback.
- CMS should fund and direct States to provide adequate funding for an independent Ombudsman’s office.CMS should fund a Medicaid Advocacy program within the federally mandated Protection and Advocacy agencies to ensure Medicaid managed care programs at the state level are adequately protecting the rights of consumers.
- CMS regulations and policy guidance must clearly outline Constitutional Due Process principles: recognizing the right to continuation of benefits under Medicaid; clarifying that plans must provide for continued coverage of terminated or interrupted services pending a final appeal decision, regardless of whether an authorization period has expired or not; clarifying that beneficiaries will not be liable for the cost of disputed services should they choose to appeal a service reduction; and tightening the timeframes within which grievance decisions must be provided.
- CMS must require states to publicize a clear mechanism for monitoring managed care organization compliance with the Due Process requirements.
- To facilitate greater state and health plan compliance with the Americans with Disabilities Act (ADA), CMS should convene a disability community workgroup to write a model ADA compliance plan that provides guidance to MCOs.
- CMS must require a medical loss ratio. CMS should require that MCOs must spend at least 80 percent of premiums on medical claims and quality improvements.
- CMS should prohibit states from carving out or excluding any public or private institutions from the managed care framework; and should increase the incentives for community-based care.
- CMS should require states to ensure that MCOs maintain a maximum ratio of care coordinators to beneficiaries.
- CMS should ensure adequate Medicaid funds are available for supportive employment services for Medicaid managed care beneficiaries with disabilities.
Recommendations to Congress
- Congress should authorize CMS to direct states to provide financial support for stakeholder engagement to assist in the construction and development of Medicaid managed care plans at the inception and support ongoing consumer engagement and feedback. Congress should address funding needs for implementation and direct CMS to require that states provide CMS with a state plan for engaging stakeholders from a broad spectrum of identified categories, including people with disabilities.
- Congress should establish a Medicaid Advocacy program and increase appropriations to the federally mandated Protection and Advocacy (P&A) agencies by an additional $5 million to hire Health Advocates to assist in monitoring and advocacy at the state level.
- Congress should direct CMS to develop ways to share models of state level engagement that are benefitting the people who are receiving Medicaid managed care services.
- Congress should direct CMS to provide periodical updates composed of disaggregated data informing the public, CMS, and the appropriate Congressional oversight offices of the status of people with disabilities under Medicaid managed care programs.
- Congress should take action to support CMS in directing states to provide adequate funding in the appointment/hiring of an independent Ombudsman for complaint and grievance resolutions.
- Congress should move forward with its deliberations and actions on bills proposed to require accountability reporting on how Medicaid managed care funds are used including the requirement that MCOs must spend at least 80 percent of premiums on medical claims and quality improvements.
 National Council on Disability. 2012. “Guiding Principles: Successfully Enrolling People with Disabilities in Managed Care Plan.” /publications/2012/Feb272012/. (Accessed October 23, 2014.)
 National Council on Disability. 2012.“Analysis and Recommendations for the Implementation of Managed Care in Medicaid and Medicare Programs for People with Disabilities.”/publications/2012/CMSFebruary272012/, (Accessed October 23, 2014.)
 National Council on Disability. (2013). “Medicaid Managed Care for People with Disabilities.”/publications/2013/20130315/. (Accessed October 23, 2014.)
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 Dooha, Susan M., Letter to Mr. Mark Kissinger, New York State Department of Health on ADA Compliance by Managed Long-term Care Plans in New York State, October 5, 2012. http://tinyurl.com/CIDNY-MLTC-ADA.http://tinyurl.com/CIDNY-MLTC-ADA-chart-xls . (Accessed October 2014.)
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 U.S. Senate Health, Education, Labor and Pensions Committee. 2013. “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act.”http://www.harkin.senate.gov/documents/pdf/OlmsteadReport.pdf. (Accessed October 23, 2014.)
 “Federal Policy Guidance,” U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, accessed October 23, 2014, http://www.medicaid.gov/Federal-Policy-Guidance/Federal-Policy-Guidance.html.