Rising Expectations: The Developmental Disabilities Act Revisited

February 15, 2011

Website Link  http://www.ncd.gov/newsroom/publications/2010/rising_expectations_02-15-11.html

Published by the National Council on Disabilities, this report describes a year-long study of the State DD Councils, P&A's, UCEDDs and Projects of National Significance authorized under the DD ACT. The favorable evaluation also contains recommendations for each of the programs and ADD.

Below is the Transmittal Letter sent to the White House and to Congress.



News Release - Rising Expectations: The Developmental Disabilities Act Revisited

Letter of Transmittal

February 15, 2011

The President
The White House
Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am pleased to submit the report entitled Rising Expectations: The Developmental Disabilities Act Revisited. The Developmental Disabilities Assistance and Bill of Rights Act (Developmental Disabilities Act), originally authorized in 1963 and last reauthorized in 2000, established a set of programs to improve the lives of people with developmental disabilities (DD), to protect their civil and human rights, and to promote their maximum potential through increased independence, productivity, and integration into the community.

NCD conducted a year-long study of how well these programs are meeting the needs of people with developmental disabilities and their families. This report presents the findings and offers recommendations for changes to help develop a more uniform national policy that will support the goals of the Developmental Disabilities Act and improve the program supports and services for people with developmental disabilities.

Since passage of the Developmental Disabilities Act, the United States has witnessed a major transformation of what it means to live with a developmental disability. Before the Act, professionals routinely advised parents and other relatives to institutionalize family members with developmental disabilities. As this report is prepared, more than 70 percent of people with developmental disabilities who receive residential services live in small group homes or on their own in the community. Access to a free appropriate public education is the right of and typical for children with DD rather than universal exclusion from public education. People with developmental disabilities were once expected to die young, and expectations for their lifetime accomplishments were small, but today their life expectancies approach that of the general population. They are among the ranks of Americans who graduate from high school, pursue post secondary education or training, enter the workforce, volunteer, and otherwise participate in the daily life of their communities.

Despite some identified gains in disability rights, people with developmental disabilities continue to face considerable barriers to full integration, maximum independence, and self-determination. Support services vary dramatically by state, and long waiting lists restrict access to services such as health care, housing, and employment. Major issues and needs remain in some areas, including unmet federal requirements for transition from school age to adulthood, access to and use of assistive technology, and support to children with disabilities in foster care.

Although the original intent of Congress was that the Administration on Developmental Disabilities would encourage collaboration among agencies that manage the key domains in the life of people with developmental disabilities, such collaboration is lacking. Today, federal developmental disability policy is established, primarily by default, through the reimbursement mechanisms of the Centers for Medicare and Medicaid Services.

Congress is expected to reauthorize the Developmental Disabilities Act (the Act) soon, making this an opportune time to consider recommendations to ensure that the Act is structured appropriately in relation to the new realities and expectations of people with developmental disabilities, their families, and the goals of our nation for all Americans. The recommendations in this report are intended to address key issues and offer a way forward when the Developmental Disabilities Act reauthorization process begins.

NCD is deeply appreciative of your efforts on behalf of people with disabilities. NCD stands ready to work with you, members of your Administration, and the leadership in Congress as you work to improve programs and outcomes for people with developmental disabilities.


Jonathan Young

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the House of Representatives.)