Autistic Self Advocacy Network (ASAN) has boosted the Special Hope Foundation’s mission of establishing comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.

And we couldn’t be happier.

Their 2013 report confirmed that youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood:

  • They may no longer have access to the same source of health coverage that they had before they turned 18
  • They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs
  • They may not get the supports they need in order to understand their health care options and make decisions for themselves.

ASAN responded to this healthcare dilemma by preparing a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help youth with disabilities manage their own health care as they transition to adulthood. The Special Hope Foundation provided funding to make these toolkits possible.

The toolkit contains:

Transition to Adulthood: A Health Care Guide for Youth and Families: It discusses the range of challenges facing youth with intellectual and developmental disabilities as they approach adulthood, including potential loss of health care coverage, barriers to obtaining adult-oriented care, and lack of support in making health care decisions. It outlines several policy recommendations to eliminate these barriers, including expanding access to income-based Medicaid coverage, increased education and awareness of the importance of transition and decision-making supports, and increased research on best practices in transition planning.

Model Supported Health Care Decision-Making Legislation. The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Advocates can use this model legislation when talking to their state legislators about ways to support people make independent health care decisions.

Model Legislation Questions and Answers

The Transition to Adulthood for Youth with ID/DD: A review of research, policy, and next steps “Transition to Adulthood: A Health Care Guide for Youth and Families” provides people with people with disabilities and their families with information on how to choose a source of health care coverage, create a health care support network, integrate health care transition goals into their educational plans, and manage their health care. It includes useful guides and worksheets for keeping track of health care.

This is the second of four upcoming toolkits for advocates on health care issues facing the disability community.

I know (from experience) that you’ll find this toolkit useful. I encourage you to share it widely, and to send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at

Thank you, ASAN.

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