Developmental Disabilities Assistance and Bill of Rights Act Amendments of 2000

Purpose - to assure that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promote independence, productivity, and integration and inclusion into the community, through --

State Councils on Developmental Disabilities in each state to promote, through systemic change, capacity building, and advocacy activities that are consumer and family-centered
Protection and Advocacy Systems in each to protect the legal and human rights of individuals with developmental disabilities
University Centers for Excellence in Developmental Disabilities Education, Research, and Service to provide interdisciplinary preservice preparation of students and fellows, community service activities, and the dissemination of information and research findings; and
National initiatives to collect necessary data, provide technical assistance to Councils, UCEDDs and P&As.

The following text was prepared by :

Bobby Silverstein,

Director of the Center for the Study and Advancement of Disability Policy

1730 K Street, N.W.

Suite 1212

Washington, D.C. 20006

(202) 223-5340 (V/TTY) or email

The text is reprinted here with permission from the author.

On October 30, 2000 President Clinton signed into law the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (Public Law No.106-402). The legislation (the DD Act) reauthorizes the Developmental Disabilities Councils (renamed the Councils on Developmental Disabilities), the Protection and Advocacy Systems, the University Affiliated Programs (renamed University Centers for Excellence in Developmental Disabilities Education, Research, and Service), and programs of national significance. In addition, the legislation authorizes separate grants for family support and a program of direct support for workers who assist individuals with developmental disabilities.

The major themes of the reauthorization include:

Clarifying and updating the Act's purposes and programs to reflect state-of-the-art, cutting edge policies and approaches and contemporary areas requiring advocacy, capacity building and systemic change activities.
Increasing accountability of programs funded under the Act.
Increasing coordination and collaboration within and across programs funded under the Act.
Increasing flexibility related to needs and priorities identified by individuals with developmental disabilities, their families, and other stakeholders.

Historical Context
Originally authorized in 1963, the DD Act focused primarily on the establishment of University Affiliated Facilities (UAFS). These UAFs were charged with expanding the number of professionals to address the needs of persons with developmental disabilities.

The 1970 reauthorization established funding for Developmental Disabilities Councils to coordinate and integrate the provision of services for persons with developmental disabilities in the least restrictive environment.

In 1975, Congress created and authorized funding for Protection and Advocacy Systems in each state to ensure the safety and well being of individuals with developmental disabilities. The 1975 reauthorization also established and authorized funding for projects of national significance to address national needs

FINDINGS, PURPOSES, AND POLICY OF THE DD ACT,
AS AMENDED IN 2000 (Section 101 of the Act)
The legislation continues to recognize the basic precept of disability policy that disability is a natural and normal part of the human experience that does not diminish the rights of individuals with developmental disabilities to exert control and choiceover their own lives and to fully participate in and contribute to their communities through full integration and inclusion in the mainstream.

The legislation updates the terminology regarding the forms of assistance individuals with developmental disabilities require to live in the community by specifying that such individuals often require "lifelong community services, individualized supports, and other forms of assistance, that are most effective when provided in a coordinated manner."

The legislation emphasizes that many service delivery systems and communities are not prepared to meet the impending needs of adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve as the primary caregivers of the adults.

In addition, the legislation points out that in almost every state, individuals with developmental disabilities are waiting for appropriate services in their communities.

Further, the legislation recognizes that there is an increasing need for a well-trained workforce that is able to provide services, supports, and other forms of direct assistance to individuals with developmental disabilities living and working in the community and participating in all aspects of community life.

The goals of the Act are updated to include providing individuals with disabilities with the information, skills, opportunities and supports to live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

The overall purpose of the Act is updated 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 not only promote independence, productivity, and integration and inclusion [prior law]) but also self-determination ([new] through culturally competent programs.

With respect to State Councils on Developmental Disabilities, the DD Act updates the purposes to focus on advocacy [now listed first] as well as capacity building and systemic change that, among other things, contribute to coordinated, consumer and family-centered, consumer and family directed, comprehensive systems that include community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families.

With respect to protection and advocacy systems, the DD Act restates the long-standing purpose to protect the legal and human rights of individuals with developmental disabilities.

With respect to University Centers for Excellence in Developmental Disabilities Education, Research and Service, the legislation focuses on continuing education as well as pre-service education the provision of community services, the conduct of research and the dissemination of information. The purpose is also to provide funding for national initiatives to collect necessary data and the provision of technical assistance.

The statement of purpose of the legislation is updated to ensure that programs, projects, and activities receiving assistance under the Act are carried out consistent with the principles that individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination. Additional updates include the following principles:

Efforts undertaken to maintain or expand community-based living options should be monitored in order to determine that they are meeting quality assurance standards.
Families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before school and after school programs in the most integrated settings appropriate in order to enrich the participation of the children in community life.
Individuals with developmental disabilities must have access to and use of public transportation in order to be independent and directly contribute to and participate in all facets of community life.
Individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings in order to enrich their participation in community life.

Principles guiding the Amendments of 1996

Individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of achieving independence, productivity, and integration and inclusion into the community, and often require the provision of services, supports and other assistance to achieve independence, productivity, integration and inclusion;
Individuals with developmental disabilities and their families have competencies, capabilities and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;
Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive and play decision making roles in policies and programs that affect the lives of such individuals and their families;
Services, supports, and other assistance are provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;
Specific efforts must be made to insure that individuals from racial and ethnic minority backgrounds enjoy effective and meaningful opportunities for full participation in the developmental disabilities service system;
Recruitment efforts within developmental disabilities at the level of preservice training, community training, practice, administration and policymaking must focus on bringing larger numbers of racial and ethnic minorities into the field in order to provide appropriate skills, knowledge, role models, and sufficient manpower to address the growing needs of an increasingly diverse population;
With education and support, communities can be responsive to the needs of individuals with developmental disabilities and their families are enriched by the full and active participation and the contributions by individuals with developmental disabilities and their families; and
Individuals with developmental disabilities should have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, community, State and Nation.