Realizing the Intent of the DD Act

Background

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act, P.L. 106–402) established a set of programs focused on individuals with intellectual and developmental disabilities (ID/DD).^{2, 3} The intent of the DD Act is to improve the lives of individuals with intellectual and developmental disabilities through planning and building system capacity and competence; providing for protections of their individual and civil rights; and establishing centers focused on research, training, and knowledge dissemination. These activities are carried out by three types of organizations, collectively known as the Developmental Disabilities (DD) Network: Councils on Developmental Disabilities Councils (DD Councils), the Protection and Advocacy (P&A) agencies (also known as the Disability Rights Centers), and the University Centers for Excellence in Developmental Disabilities (UCEDD). Although their work is interrelated and complementary and they frequently collaborate, each entity comes with specific charges in terms of purpose and activities. The DD Act was first authorized in 1963, was last reauthorized in 2000. The DD Act funds these organizations for each state and U.S. territory, at a total of $155 million in fiscal year 2010.⁴ These funds are administered by the Administration on Developmental Disabilities (ADD), a federal agency presently located in the Department of Health and Human Services, Administration on Children and Families.⁵

According to the stipulations of the Act, DD Councils, "engage in advocacy, capacity building, and systemic change activities…; and, (2) contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system of community services." The DD Councils' members are appointed by their respective governors and include a wide array of stakeholders who determine the priorities of each council. The P&A organizations are established to protect the legal and human rights of individuals with ID/DD (as well as other disability groups) through advocacy and legal actions. The UCEDDs are charged to provide training to students and clinicians, across a range of disciplines provide technical assistance to community services providers, develop demonstrations and model exemplary projects, and carry out basic and applied research in the field of developmental disabilities.

In particular, the Developmental Disabilities Act recognizes the competencies, capabilities and personal goals of individuals with developmental disabilities in contributing to a system where individuals with developmental disabilities have the ability and opportunity to make personal decisions, exert control over their lives, and participate in the same community activities that are available to individuals without disabilities. Inclusion and integration of individuals with developmental disabilities in the communities of our society, as well as individual choice and control of life decisions and daily living activities are core intents of the DD Act. Furthermore, the Americans with Disabilities Act (ADA) expressly states that, "no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by such entity." (42 U.S.C. § 12132) The guiding principle of the U.S. Supreme Court's landmark 1999 decision in Olmstead v L.C. is the inherent right of an individual to be free from unnecessary segregation from the general public. Both the ADA and Olmstead reinforce the principles stated in the DD Act.