The Developmental Disability Network: Working Together Toward Full Integration

July 21, 2015
Andrew Imparato, Executive Director of Association of University Centers on Disabilities

Photo of Andrew ImparatoAs the 25th anniversary of the Americans with Disabilities Act (ADA) approaches, ACL is featuring guest blogs from leaders in the disability community. In this guest blog, Andrew Imparato, director of the Association of University Centers on Disabilities, describes how the university centers work to ensure that the voices of people with disabilities are heard within and beyond the halls of academia.

It all started in October 1962 with an idea proposed to President Kennedy by a presidential panel convened to seek solutions to support community living of individuals with intellectual and developmental disabilities, rather than the institutions so many were placed in. The idea: Build capacity of the community by tapping into the resources and expertise of universities to train a new generation of physicians and other professionals who can support community living of children with developmental disabilities. In 1963, President Kennedy signed a law that created university centers to support community living of individuals with developmental disabilities.

This law laid the foundation for what has become a unique national resource to individuals with developmental disabilities, their families, and the community. Today, University Centers of Excellence in Developmental Disabilities (UCEDDs) continue to act as a bridge between the research and teaching and the communities of people with developmental disabilities and their families. They comprise a national network of 68 UCEDDs, with at least one in each U.S. state and territory, working to achieve the goal set by the presidential commission over 50 years ago: to ensure that all Americans, including all of those with disabilities, can participate fully in their communities and that all Americans can be independent, productive, valued and live where they want to live.

Building on what was started in 1963, State Councils on Developmental Disabilities and Protection and Advocacy Systems were later added, creating a “DD Network” in each state and territory. Today, UCEDDs work in partnership with State Councils and Protection and Advocacy Systems to improve outcomes of individuals with developmental disabilities.

UCEDD’s have made significant contributions to the developmental disabilities community throughout their history. One unique contribution to the field is the type of training they provide. UCEDDs conduct interdisciplinary training, which provides a forum for students from a variety of backgrounds to learn together and better understand how to solve problems related to services and supports for individuals with developmental disabilities and their families. Since 1963, thousands of physicians, occupational therapists, audiologists, teachers, speech and language pathologists, and professionals in scores more occupations have become better prepared to serve and support those with developmental disabilities through interdisciplinary training. Better trained professionals mean better health, education, and employment outcomes for individuals with developmental disabilities and their families.

UCEDDs conduct a remarkable volume of work in the community. In partnership with individuals with developmental disabilities, their families and other members of the community, UCEDDs are solving problems to make communities more inclusive, testing innovative approaches to services and supports, filling gaps in services, and training thousands. Through their work in the community:

  • A young couple with their first child receives medical screenings and parent-to-parent support for their son with Down syndrome.
  • An elementary school girl with cerebral palsy is provided with a communication device and can speak to her classmates and family members.
  • A high school teacher learns how best to interact and support a young autistic man so he can excel in his ability to program computers.
  • A young woman with an intellectual disability makes her transition from high school to a job at a law firm, earning enough to have her own apartment with support from a local social services agency.

In addition to training and community services, UCEDDs have used research to make significant contributions to the field. UCEDD research has helped states make better investments in proven methods such as positive behavioral interventions and support (PBIS) in schools, supported employment services in workplaces, and early intervention services. Many UCEDDs are engaged in national research studies examining how self-determination improves outcomes; parent training improves children’s behavior; and how demographic, environmental and social factors influence child development. UCEDDs are carrying research to better understand disabilities and diagnosis, such as acute and late onset hearing loss in newborns and on-set of autism spectrum disorders.

UCEDDs actively share their knowledge and expertise by distributing the most up-to-date information about developmental disabilities to people with disabilities themselves, family members, researchers, services providers, policy makers, and the general public. This information can then be used to determine what approaches are best for improving the quality of life for people with developmental and other disabilities.

The legacy of this network is clear. UCEDDs have played a key role in almost every major disability initiative, including the development of early intervention programming, community-based services for adults, improved health care interventions and targeted prevention strategies to reduce secondary health concerns such as high blood pressure and diabetes, transition services from school to work, and post-secondary education for youth with intellectual and developmental disabilities, among others.

All of these accomplishments over the past 50 years have been achieved in collaboration with people with developmental disabilities and their families. During the next 50 years, we look forward to continuing to work with individuals with developmental disabilities and their families, as well as working closely with cross-disability groups, the aging and civil rights communities, employers, and many other partners to accelerate the movement toward the goals of full participation, independent living, equality opportunity, and economic self-sufficiency for all people with disabilities.

As with all guest contributions to the ACL website, this blog reflects the experiences and thoughts of the author. Find more information about guest content on the ACL site.

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Last modified on 01/11/2017

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