Federal Agency Calls for Elevated Role of Small Office within U.S. Department of Health and Human Services in Creating Developmental Disabilities Policy

NCD #11–613
February 15, 2011 

WASHINGTON — The National Council on Disability, an independent federal agency, today released a report titled Rising Expectations: The Developmental Disabilities Act Revisited, in which it recommends to Congress changes to develop a more uniform national policy that will support the goals of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and improve the programs the law created.

The report is the culmination of a study that researched the accomplishments of the DD Act in the past 40 years, the strengths and weaknesses of the existing structure, and the suitability of the current structure to the current and future social and policy environment. In preparing the report, researchers interviewed and consulted on a monthly basis with consumer groups, advocacy organizations, staff of the Administration on Developmental Disabilities (ADD), self-advocates, and other experts.

“It is clear that the DD Act has spelled remarkable change for the better in the lives of people with developmental disabilities,” said NCD Council Member Marylyn Howe, who presented a summary of the report yesterday at the 2011 Disability Policy Seminar in Washington, DC. “Instead of being marginalized and forgotten, people with developmental disabilities have made huge strides in taking their rightful place in society — in classrooms, at work, in recreation, and even within their own families.”

Julie Carroll, NCD Senior Staff Attorney, added, “Despite the encouraging advancements, much progress remains to be made. Thankfully, the progress seems more inevitable, due in large part to the burgeoning and sophisticated self-advocacy movement that has been cultivated in no small part by the DD Act.”

The report explains that most of the current challenges confronting people with developmental disabilities stem from four underlying issues: the system is complex and fragmented; services vary dramatically by state; long waiting lists restrict access to services; and attitudes of the public are outdated. The report also calls attention to the structural dislocation of ADD within the U.S. Department of Health and Human Services (HHS) and from other federal agencies that develop and fund programs for people with developmental disabilities, as well as ADD’s perceived lack of visibility — and its lack of influence beyond the DD Act programs themselves

Although the original intent of Congress was that ADD would span agencies that manage key domains in the lives of people with developmental disabilities, today that power is concentrated in the Centers for Medicare and Medicaid Services (CMS), and DD policy is generally absent from other departments and agencies.

NCD recommends in the report that ADD should be reconfigured to assume a new leadership role in developing and promoting public policy and programs for people with developmental disabilities at the federal level based on the tenets embodied in the DD Act and receive an increase in resources to equip it to accomplish this new role.

“Following the conclusion of the research for this report, Sharon Lewis was appointed Commissioner of ADD and already, positive change has begun to take root,” said NCD Chairman Jonathan Young, “As Congress and President Obama spend coming weeks in discussions around the allocation of federal dollars, NCD hopes this report can aid decision makers and help ensure that people with developmental disabilities continue to mark gains in their ability to fully participate living, learning, and earning alongside their non-disabled peers.”

NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. This mandate includes reviewing and evaluating programs established under the DD Act.