Developmental Disabilities Assistance and Bill of Rights Act

Consortium for Citizens with Disabilities Developmental Disabilities Task Force Fact Sheet

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) is due to be reauthorized in 2007. The DD Act is legislation with a rich human service legacy and a long history of bipartisan Congressional support. Originally authorized in 1963 as the Mental Retardation Construction Act and last reauthorized in 2000 (PL 106-442), the DD Act focuses on the needs of our most vulnerable United States citizens, the 4.5 million people with developmental disabilities. The purpose of the act is to help individuals with developmental disabilities achieve independence, productivity, integration and inclusion into the community.

For more than 30 years, the programs of the DD Act have helped build the infrastructure, train the professionals, perform the research, and provide essential services that have vastly improved the lives of people with disabilities and their families. The DD Act ensures that people with developmental disabilities and their families participate in the design and have access to culturally competent services, supports, and other assistance and opportunities. Today its programs provide invaluable services and supports to enrich the lives of people with developmental and other disabilities across the lifespan.

The Act funds five main programs: State Councils on Developmental Disabilities, Protection and Advocacy Agencies, University Centers for Excellence in Development Disabilities, the Family Support Program and Projects of National Significance.

State Councils on Developmental Disabilities: In the 1970 reauthorization of the DD Act, Congress recognized the need for strengthening State efforts to coordinate and integrate services for individuals with developmental disabilities. As a result, Congress established and authorized funding for State Developmental Disabilities Councils (DD Councils) in each State and Territory. A key mission of Councils is to advise Governors and State agencies on the use of available and potential resources to meet the needs of individuals with developmental disabilities. State DD Councils also engage in advocacy, build capacity and work to affect change and enhance systems to contribute to a coordinated, consumer-directed and family-centered array of community services, individualized supports and other forms of assistance. Their work allows individuals with developmental disabilities to exercise self-determination and live in their communities. On a daily basis this may include the demonstration of new approaches; training activities; promoting interagency initiatives; supporting communities to respond positively; educating the public; providing information and recommendations to policy-makers; and eliminating barriers

Protection and Advocacy Programs (P&A): Under the Protection and Advocacy for Persons with Developmental Disabilities (PADD) program created by the Developmental Disabilities Assistance and Bill of Rights Act of 1975, P&As are required to pursue legal, administrative, and other appropriate remedies under all applicable federal and state laws to protect and advocate for the rights of individuals with developmental disabilities. Collectively, the P&A network is the largest provider of legally based advocacy services to people with disabilities in the United States. The federally mandated P&As serve individuals with a wide range of disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities – by guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems

University Centers of Excellence in Developmental Disabilities (UCEDD): UCEDDs work to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity and community inclusion are key components of this vision. The DD Act funds 67 Centers at universities in every state and territory. Through their unique make up UCEDDs serve people with disabilities, members of their families, state and local government agencies and community providers. In 2006 alone, the national network of UCEDDS: provided professional preparation for working in this field to over 4,000 students; provided technical assistance and training to approximately 172,000 health, education, mental health, and policy-making professionals, as well as people with disabilities and their families; provided direct (clinical or other) services to more than 51,000 individuals with developmental disabilities and/or their families; conducted over 1,000 research projects whose results may benefit people with disabilities; developed and disseminated over 2,000 different publications to bring the most current information to professionals and the community.

Family Support: The family support program provides grants to States to help them provide practical, low cost supports and services to help families supporting members with severe disabilities to remain intact. Family support programs have proven to be both cost-effective and family-friendly in providing practical assistance to families with children and adults with disabilities. Without the family support programs funded through the DD Act, many people caring for family members with disabilities would be unable to do so. Too often, the efforts of these families are the only thing that stands between their family members being able to live at home in the community or placed out of the home in an inappropriate, and expensive, State-supported institution.

Projects of National Significance (PNS): PNS projects are funded to collect necessary longitudinal data, provide technical assistance to State DD Councils, P&As, and UCEDDs, and support unique promising projects likely to substantially contribute to the independence, productivity, and integration and inclusion of persons with developmental disabilities into the community.

Reauthorization: The Developmental Disabilities Assistance and Bill of Rights Act is the fundamental law supporting and enhancing the lives of people with developmental disabilities and their families. As the reauthorization process gets underway it is important to celebrate the victories the DD Act has achieved and strengthen it to meet the challenges ahead by:

· Working toward timely reauthorization of the DD Act

· Expanding the capacity of DD Network to serve people with developmental disabilities and their families

· Providing increased resources to allow the DD Network to meet the emerging and changing needs of people with disabilities

· Reaffirming the commitment to support people with disabilities