The federal Administration on Intellectual and Developmental Disabilities (AIDD) has released the final rule for The Developmental Disabilities Assistance and Bill of Rights Act of 2000.
The DD Act, which this rule clarifies, does not fund direct services to people with developmental disabilities except when those services are incidental to the activities of DD Act programs. Those programs include State Councils on Developmental Disabilities, State Protection and Advocacy Systems, UCEDDS (University Centers for Excellence in DD Education, Research & Service), and Projects of National Significance.
The “new” rule for the DD Act of 2000 was first proposed, commented on, and then closed for comment in 2008. The final rule includes technical changes arising from the Affordable Care Act and other recent legislation and reorganization within federal agencies.
These are links to the final rule and the DD Act Final Rule Toolkit from the AIDD.
The DD Act of 2000 was scheduled to be reauthorized in 2007. This did not occur, although funding for the act has continued. It has now been fifteen years since the DD Act and DD Act programs have been subject to reauthorization. Reauthorization by Congress is usually accompanied by extensive review of the Act, public hearings, and solicitation for proposals for reform.
DD Act programs and many agencies and organizations funded by the DD Act, in promoting self-determination, independence, and systems change for people with developmental disabilities, have been criticized for disregarding individual choice and the legal right to appropriate services. The ideology of "full inclusion", the idea that all people with disabilities can be fully integrated into "the community", regardless of the severity or nature of the individual's disability, has been promoted by these programs along with support for the eventual elimination of specialized programs for people with DD. This ideology is not universally supported by individuals with DD and their families and often conflicts with their desire for appropriate services and settings based on individual needs and choice.
In light of this conflict, Congress should provide the oversight that is expected in the reauthorization process and consider reforms to prevent DD Act programs from infringing on the individual rights of people with disabilities and their families.