Why the Developmental Disabilities Act Matters

History

In 1963, individuals with developmental disabilities faced exclusion from many spheres of public and private life, including most schools and community spaces. Many people spent most of their lives in large, state-run institutions. These institutions were often grossly underfunded and reports of systemic abuse and neglect were common.

It is in this context that President John F. Kennedy signed the law now known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act).

Since the DD Act was enacted, it has come to represent a fundamentally different vision of what it means to live with a developmental disability. It is a vision rooted in the belief that “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

Learn more about the history of the DD Act.

How the DD Act advances a vision of inclusion

DD Act programs in every state and territory empower individuals with developmental disabilities and their families to help shape policies that impact them. DD Act programs conduct important research and test innovative new service delivery models. They work to bring the latest knowledge and resources to those who can put it to the best use, including self-advocates, families, service providers, and policymakers. DD Act programs also investigate cases of abuse and serve as advocates for individuals with developmental disabilities and their families.

Learn more about the specific programs and initiatives made possible by the DD Act and the difference they have made for individuals with developmental disabilities below.

State Councils on Developmental Disabilities

While some DD Act programs provide direct services to individuals, the 56 State Councils on Developmental Disabilities (DD Councils) are designed to take a big picture approach to create structural change with a long-term impact.

DD Councils are designed to be operated by and for the developmental disability community. The DD Act requires 60 percent of council members be individuals with developmental disabilities or their family members. Every five years, each council takes a comprehensive look at the needs of individuals with developmental disabilities in the state or territory and develops a five-year plan of action to promote self-determination, integration, and inclusion.

DD Councils seek to create positive change through advocacy, systems change, and capacity building. They provide training and technical assistance to advocates, families, and service providers. They bring together businesses, service providers, agencies, policy-makers, and community groups to find solutions to persistent problems. They develop and test innovative new programs and service models. Most importantly, DD Councils bring the voices of individuals with developmental disabilities to the policy-makers whose decisions impact their lives.

Sampling of DD Council projects:

• Partners in Policymaking was developed by the Minnesota Governor’s Council on Developmental Disabilities in 1987 to empower people with developmental disabilities and their family members to become leaders and advocates. Since then, more than 21,000 have completed the program in the U.S. and more than 2,000 have participated internationally Watch a self-advocate describe what the program means.

• The DC Developmental Disabilities Council collaborates with local health and community-based stakeholders to incorporate the functional and accessibility needs of DC residents with developmental disabilities in emergency planning.

• Many DD Councils participate in Project SEARCH, a program which uses real-life work experience to help youth with disabilities make successful transitions from school to adult life.

• Through its Real Communities program, the Georgia Council on Developmental Disabilities brings people with and without disabilities together for projects to improve the community. Watch the program in action.

• Navigating Your Way is an eight-part video series developed by the Washington State Developmental Disabilities Council to provide guidance and identify resources for individuals with developmental disabilities of all ages and their families.

State Protection & Advocacy Systems

Protection and Advocacy systems (P&As) were established by the DD Act in 1975 as the nation was learning about the shocking conditions many people with development disabilities faced at institutions like the Willowbrook State School. In the decades since, Americans with disabilities have successfully fought for new legal and civil rights protections that provide dignity and inclusion.

Yet many with developmental disabilities, particularly those living in institutions, still face unique barriers to accessing the critical protections promised them by law. P&As play an important role in removing these barriers and addressing the shocking rates of abuse, neglect, and violence faced by those with developmental disabilities. Their success in this work has led Congress to create additional programs allowing P&As to serve the entire disability community.

The national network of 57 P&As inform people of their rights, investigate suspected abuse and neglect, and provide free legal representation for clients. P&As have broad legal authority to access records, facilities, and individuals when conducting investigations, placing them in an unique position to detect and address abuse. P&As are also independent of all service providers and at least half of each system’s governing board members are people with disabilities. This direct connection with the disability community allows P&As to amplify the voices of the disability community, engage in systems change work, and educate policymakers on the concerns of people with disabilities. 

Here are just a few examples of the work done by P&As:

• When Matthew, a 7 year old with cerebral palsy, was told by his local recreations commission that he couldn’t play baseball, his mother called the Disability Rights Center in Kansas who filed a suit on their behalf. In court, Mathew showed that he could hold a baseball bat in one hand and his walker in the other and the judge agreed that he could not be excluded from playing baseball.
• P&As frequently work directly with families navigating the IEP process to ensure students get the services and supports they need to thrive at school. For example, Michigan Protection & Advocacy Service, Inc. has produced “Students with Disabilities: An Advocate’s Guide.”
• Many people with disabilities turn to P&As when administrative hurdles prevent them from getting the services and supports they need to remain independent. Find out how Disability Rights Florida helped Victor after Medicaid denied his request for a wheelchair.
• P&As are able to access all settings in which services are provided to people with disabilities, including prisons. Find out how Disability Rights Washington’s AVID program monitors prisons to ensure inmates with disabilities are treated humanely.
• When veteran Adan Gallegos was forced to leave a local business because he had brought his service dog, Bootz, Disability Rights Texas provided legal representation leading to an eventually settlement out of court. But they didn’t stop there, Gallegos and DRTx brought their concerns to the state legislature which passed “Bootz’s Bill” clarifying the ADA’s guarantees of access for individuals using service animals. At the signing ceremony, Bootz’s paw print appeared next the governor’s signature.

University Centers for Excellence in Developmental Disabilities Education, Research & Service

Found in every state and territory, University Centers for Excellence in Developmental Disabilities (UCEDDs) work to improve the lives of people with developmental disabilities and their family members and ensure that voices from this community are heard in the halls of academia.

UCEDDs also take their work off campus. They provide training, technical assistance, and continuing education to hundreds of thousands of professionals and community members. They also develop a vast array of guides, videos, webinars, and reports. Finally, UCEDDs run model diagnostic, clinical, and demonstration programs that serve over 200,000 people with developmental disabilities each year.

While all 68 UCEDDs are interdisciplinary, no two UCEDDs are alike. UCEDDs unite faculty and students from multiple departments and disciplines within universities. Together, they conduct cutting-edge research and bring the latest knowledge to those who can put it to the best use, training the next generation of lawyers, engineers, educators, health professionals, social workers, and social scientists.

Many UCEDDs tailor their programs to take advantage of unique strengths or resources within their university and to address specific concerns in their communities. This has resulted in a network with a great depth of knowledge on a broad range of issues including education, employment, assistive technology, health, housing, and transportation.

Here are just a few examples of the work being done by UCEDDs:

• Through the University of Maine’s Center for Community Inclusion and Disability Studies’ Interdisciplinary Disability Studies program, undergraduate and graduate students explore disability within the larger context of diversity and examine professional practice, scholarship, and policy.

• The Early Childhood Program at the University of Wisconsin-Madison’s Waisman Center offers a model supportive learning environment for a developmentally diverse group of children between the ages 1 and 5. The program takes advantage of the Waisman Center’s expertise and provides important research and training opportunities for faculty and qualified students. It also serves as a resource for early childhood professionals in the community.

• Since 1972, the Westchester Institute for Human Development has provided services in Valhalla, NY. Mitchell went from receiving services as a child to becoming a self-advocate and WHID staff member as an adult. Find out how early intervention and speech therapy helped put him on a path to autonomy.

• The MIND Institute at the University of California-Davis has been a national leader in autism research, including work on effective early interventions and studies using virtual reality technology. Watch lectures from MIND Institute experts.

Projects of National Significance

The needs of people with developmental disabilities and their families are always changing. Therefore, programs and policies that can help them thrive are constantly evolving. In addition, the policy solutions of a decade ago may not always account for today’s challenges. This is why Projects of National Significance (PNS) are so critical to the success of the DD Act.

PNS focus on the most pressing issues affecting people with developmental disabilities and their families. They also allow AIDD to help fill gaps identified by the community, as well as quickly address new issues with a national scope.

PNS typically last one to five years and are funded through grants, contracts, or cooperative agreements to private or public nonprofit organizations. They provide critical data in the area of developmental disabilities; generate and evaluate innovative policies and approaches; and support the work of DD Councils, P&As, and UCEDDs. The projects address many areas including youth transitions, family support, self-advocacy, community living, and supporting traditionally underserved communities.

Here are just a few examples of the work funded by Projects of National Significance:

• The Quality Trust for Individuals with Disabilities is building a national training, technical assistance, and resource center to explore and develop supported decision-making as an alternative option to guardianship.

• The State of the States in Developmental Disabilities is a comparative nationwide longitudinal study of public programs, funding, and trends in developmental disabilities services and supports. The website includes a “create a chart” feature allowing the public to analyze and compare data.

• The Autistic Self Advocacy Network, Self Advocates Becoming Empowered, and the National Youth Leadership Network worked together to develop a report titled “Keeping the Promise of Community: Self Advocates Defining the Meaning of Community Living (PDF).” The effort ensured that the voices of self-advocates were heard as CMS was seeking comments on a Home and Community Based Settings Rule.