Introduced: October 27, 1999 by Senator James M. Jeffords, Chairman, Health, Education, Labor, and Pension Committee. Original Co-Sponsors: Senators Kennedy, Harkin, Frist, Collins, Wellstone, Reed, Dodd, and Murray.

The Developmental Disabilities Assistance and Bill of Rights Act of 1999 (DD Act) is the reauthorization of a piece of legislation with a rich legacy, and a long history of bi-partisan Congressional support. Originally authorized in 1963 and last reauthorized in 1996, the DD Act has always focused on the needs of our most vulnerable citizens, an estimated four million individuals with developmental disabilities, including individuals with mental retardation and other lifelong, pervasive disabilities.

 Initial versions of this legislation focused primarily on the interdisciplinary training of professionals to work with individuals with developmental disabilities. The University Affiliated Facilities (UAFs) were the first federally funded programs charged with expanding the cadre of professionals to address the needs of individuals with developmental disabilities. These programs were later renamed University Affiliated Programs

(UAPs). UAPs provide advocacy, capacity building, and systemic change through interdisciplinary education, community services, and dissemination of information in the field of developmental disabilities. In the 1999 reauthorization these programs become University Centers for Excellence in Developmental Disabilities Education, Research, and Service.

In the 1970 reauthorization of the DD Act, Congress recognized the need for, and value of 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. The purpose of DD Councils was, and continues to be, to advise governors and State agencies on the use of available and potential resources to meet the needs of individuals with developmental disabilities. Councils undertake a wide range of advocacy, capacity building, and systemic change activities directed at improving access to community services and supports for individuals with disabilities and their families.

In 1975, Congress created and authorized funding for Protection and Advocacy Systems (P & As) in each state to ensure the safety and well being of individuals with developmental disabilities. The mission of P&A systems has evolved over the years, initially addressing the protection of individuals with developmental disabilities who lived in institutions, to the present responsibilities related to the protection of individuals with developmental disabilities from abuse, neglect, and exploitation, and from the violation of their legal and human rights, both in institutions and in the community.

The 1975 reauthorization of the DD Act also established and authorized funding for Projects of National Significance to address particular national needs. Over the years, projects related to areas such as people with developmental disabilities and the criminal justice system, home ownership, employment, assistive technology, and self-advocacy for individuals with developmental disabilities have been initiated through these projects.

Since 1975, this legislation has authorized the following major programs in States: The Developmental Disabilities Councils, the Protection and Advocacy Systems, and the University Affiliated Programs. It has also included the Rights of Individuals with Developmental Disabilities, and authorization for Projects of National Significance.

 S. 1809, The Developmental Disabilities Assistance and Bill of Rights Act of 1999 (DD Act)

The Developmental Disabilities Assistance and Bill of Rights Act of 1999 builds on the past successes of these programs, reflects today's changing society, and seeks to provide a foundation for the services and supports that individuals with developmental disabilities, their families, and communities will need as we enter the next century. The following summarizes the major provisions of this bill.

 Title I

Title I includes Subtitles A-E. Subtitle A includes general provisions of the Act. Subtitle B establishes the authority and funding for State Councils on Developmental Disabilities. Subtitle C establishes the authority and funding for Protection and Advocacy Systems. Subtitle D establishes the authority and funding for a National Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service. Subtitle E establishes and authorizes funding for Projects of National Significance, and other administrative functions.

This reauthorization continues a tradition of support for a DD Network in each State comprised of a DD Council, a Protection and Advocacy System, and one or more University Centers for Excellence in Developmental Disabilities Education, Research, and Service. The network engages in advocacy, capacity building, and systemic change activities in these areas of emphasis: quality assurance, education and early intervention, child care, employment, health, housing, transportation, recreation and other services for individuals with developmental disabilities and their families. The network is guided by the principles of the DD Act and by state of the art practices which emphasize the empowerment of individuals with developmental disabilities and their families.

The bill continues and further develops the important work of the DD Act programs in each State. It seeks to ensure that more individuals with developmental disabilities are able to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of our nation. The bill assists DD Act programs to improve the quality of supports and services for individuals with developmental disabilities and their families regardless of where they choose to live.  

Unfortunately, in keeping with other realities of our time, the bill also recognizes that individuals with developmental disabilities are at greater risk of abuse, neglect, financial and sexual exploitation, and the violation of their legal and human rights, than the general population. Based upon this recognition, the bill supports the extra effort and attention that is needed, in both individual and systemic situations, to ensure that individuals with developmental disabilities are put at no greater risk of harm than others in the general population.

The legislation recognizes that individuals with developmental disabilities often have multiple, life long needs that require interaction with agencies and organizations that offer specialized assistance as well as access to generic services in their communities. The nature of the needs of these individuals and the capacity of States and communities to respond to them have changed. In the past 5 years, new strategies for reaching, engaging, and assisting individuals with developmental disabilities have gained visibility and credibility. These new strategies are reinforced by and reflected in this bill.

In the past, the Councils, P & A Systems and Centers have been authorized to provide advocacy, capacity building, and systemic change activities to make access to and navigation through various service systems easier for individuals with developmental disabilities. Over time there has been pressure for each of these programs to provide assistance beyond the limit of their resources and beyond their authorized missions. The bill clearly specifies the roles and responsibilities of Councils, P & A Systems, and Centers so that there is a common understanding of what the programs are intended to contribute toward a State's efforts to respond to the needs of individuals with developmental disabilities and their families.

The legislation gives States' Councils, P & A Systems, and Centers more flexibility. Each program in a State, working with stakeholders, is to develop goals for how to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, integration, and inclusion in all facets of community life. Goals may be set in any of the areas of emphasis: quality assurance, education and early intervention, child care, health, employment, housing, transportation, recreation, or other community services.

Consistent with Congressional emphasis on strengthening accountability for all federal programs, this legislation requires each program to determine, before undertaking a goal, how it will be measured. The Secretary of the Department of Health and Human Services (HHS) is to develop indicators of progress to evaluate how the three programs have engaged in activities to promote and achieve the purpose and policy of the Act in terms of choices available to individuals with developmental disabilities and their families, their satisfaction with services, their ability to participate in community life, and their safety. In addition, the Secretary is to monitor how the three programs funded in each State coordinate their efforts, and how that coordination affects the quality of supports and services for individuals with developmental disabilities and their families in that State.

There is growing awareness of what individuals with developmental disabilities, with appropriate support, are able to accomplish when they have access to the same information, choices, and opportunities as others. There is increasing recognition of and support for self-advocacy organizations established by and for individuals with developmental disabilities. This bill promotes self-determination and self-advocacy by authorizing each State Council to support a State self-advocacy organization of individuals with developmental disabilities.

As a result of over 30 years of planned expansion by Congress, each State now has at least one UAP. This legislation renames the University Affiliated Programs as "University Centers for Excellence in Developmental Disabilities Education, Research, and Service". It also expands their core functions to include the conduct of research, and links them together to create a National Network.

By administering the three programs specifically authorized under the DD Act and by funding projects of national significance to accomplish similar or complementary efforts, the Administration on Developmental Disabilities (ADD) in HHS plays a critical role in supporting and fostering new ways to assist individuals with developmental disabilities. This bill provides to ADD the ability to foster collaboration and integration across the Executive Branch, and to engage in activities to improve choices, opportunities, and services for individuals with developmental disabilities.

 Title II

This Title includes authorizations and appropriations to create a State grants program related to Family Support for families of individuals with severe disabilities. The bill recognizes that forty-nine States have begun to develop family support programs for families with children with disabilities. This title supports States by providing grants (one, 3-year grant per State, on a competitive basis) to assist States to provide services to families who choose to keep their children with disabilities at home and not be forced to place their children in institutions due to the lack of support. The bill gives States flexibility to use targeted funds to initiate, strengthen, or expand State family support programs.

 Title III

 Title III, Program for Direct Support Workers Who Assist Individuals with Developmental Disabilities, includes provisions proposed by Senators Frist and Wellstone. The title addresses a national need to increase the number and improve the training of direct support workers who assist individuals with developmental disabilities. Senator Frist's provision authorizes the development and dissemination of a technology-based training curriculum to provide state of the art staff development for direct service workers for people with developmental disabilities and their families. Senator Wellstone's provision establishes a scholarship program to encourage continuing education for individuals who provide direct service to people with developmental disabilities and their families.

 Title IV

This title repeals the existing DD Act on the date of enactment of this bill.

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