What is the Developmental Disabilities Act and why does it matter?

[The links to DD Act programs no longer work, but that does not mean the programs have been disappeared by the current administration. Here is another link that is current that should lead you to the same information. JRB, 7/19/18]

In my experience, most families of people with developmental disabilities have either never heard of the DD Act or have only a vague notion of what it is and how DD Act programs affect them.

One of the more surprising facts about the DD Act is that it does not fund direct services to people with developmental disabilities. Funding for DD Act programs may incidentally provide services to people with disabilities and their families through, for instance, pilot programs or training and education, but funding is primarily focused on advocacy, “systems change”, research, and support for organizations and agencies that promote the goals of the DD Act.

The Developmental Disabilities Assistance and Bill of Rights Act of 2000, a.k.a. the DD Act, is a federal law that grew out of “mental retardation” laws from the 1960s that were designed to improve conditions of care in state institutions and expand opportunities for people who historically faced exclusion from schools and many other community activities.

Information on the history of the DD Act and the programs that it currently funds is available on the website for the Administration on Intellectual and Developmental Disabilities. The AIDD is part of the Administration for Community Living (ACL) under the U.S. Department of Health and Human Services.

DD Act programs include: 

• State Councils on Developmental Disabilities that are “…federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives."
• State Protection & Advocacy Systems (P&As) “…work at the state level to protect individuals with developmental disabilities by empowering them and advocating on their behalf. There are 57 P&As in the United States and its territories, and each is independent of service-providing agencies within their states.”
• University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are affiliated with universities and "...receive a discretionary grant that is awarded to interdisciplinary education, research, and public service units of universities, or public or nonprofit entities associated with universities. AIDD funding is used to support the organizational foundation of UCEDDs, which allows the grantees to pursue other sources of support to conduct various activities. UCEDDs leverage funding from a variety of sources, including federal, state, and local agencies; private foundations; donations; and fee-for-service earnings."
• Projects of National Significance (PNS) ",,,focus on the most pressing issues affecting people with developmental disabilities and their families, creating and enhancing opportunities for these individuals to contribute to, and participate in, all facets of community life." 
• Family Support Programs are designed to "...promote and strengthen implementation of comprehensive state systems of support services for family members providing care. Congress first allocated funds directly to the program beginning in 2008, although PNS funds had been used for Family Support initiatives in prior years."  
• Direct Support Workforce is a program included in the DD Act "...to increase the workforce serving people with developmental disabilities." However, Congress has not provided direct funding for this program. "...PNS funds have been used for an online training course for direct support workers, the College of Direct Supports, which is used as a resource by agencies and states."

One problem with the DD Act of 2000 is that, although the law was scheduled for reauthorization in 2007, Congress has not taken a close look at it in fifteen years. Reauthorization is an occasion for Congress to review, investigate, and hold hearings on federal legislation to determine the effectiveness of the law, whether it is achieving the desired effects, and whether it should  continue as is or be changed and improved. It is also a chance for people directly affected by the law and the general public to participate in advising Congress on their experiences and recommendations for change. Instead, the DD Act remains unchanged, while appropriations are approved every year without the benefit of more intensive scrutiny and  oversight. 

For detailed information, see:

• The Developmental Disabilities Assistance and Bill of Rights Act 
• The DD Act of 200 Final Rule: The rule making process for implementing the DD Act of 2000 began in 2008. The opportunity to comment on the Rule closed in September 2008, but the final rule did not gain approval by the AIDD until 2015. [To be clear, anyone can comment on any government policy whenever they choose to do so. The formal comment period is a time in which there are specific requirements for government agencies to consider comments from the public and respond to them.]  It is hard to tell if this delay was because of the controversy surrounding some of the DD Act programs or other factors within the administration of the Departmcent of Health and Human Services.  
• DD Act Rule Toolkit: More information on the implementation of the DD Act Rule and the network of DD Act programs and “Technical Assistance Providers”.

Coming soon: The definition of Developmental Disabilities and the much overlooked Bill of Rights for people with developmental disabilities.