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December 2013



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Today, the Autistic Self Advocacy Network is proud to announce the release of “The Transition to Adulthood for Youth with ID/DD: A review of research, policy and next steps”. This policy brief (found here) analyzes the challenges faced by youth with intellectual and developmental disabilities (I/DD) in moving from pediatric to adult health care systems, accessing specialized health care, obtaining supports, and developing self-advocacy skills.


More than a third of young people in the U.S. who have special health care needs have been diagnosed with a behavioral or developmental disability. All of them face their own sets of challenges and obstacles in their lives. But there is one thing they hold in common — the need for continued support and health care as they transition from adolescence to adulthood. Typically, by the age of 26 young people age out of the medical coverage they may have had as children. In fact, over 75% of uninsured young adults have reported forgoing necessary medical care because of cost.


When children become adults, they start needing to self-direct their care: managing their own health care needs, including making their own doctor’s appointments and managing their own treatments. However, young people with disabilities often have a much greater difficulty with this. It is important that young people with I/DD are taught how to, and encouraged to, take their well-being into their own hands. Lack of access to support with managing health conditions may lead to serious adverse health outcomes, especially for young adults with complex medical needs.


To help combat the issues young people with I/DD face in entering the world of adult health care, our policy brief recommends specific next steps in research, program development and public policy to enable youth with I/DD to get the support and coverage they need. We hope you find it useful. Please feel free to share it broadly with your networks. As always, Nothing About Us, Without Us!


Read more here!

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