The Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center funded by ACL’s Administration on Disabilities (AoD), has launched a new website to help young people with intellectual and developmental disabilities (I/DD) direct their own transition to the adult health care system.

Developed for and by youth with I/DD, the site has a variety of both person-centered and culturally competent tools and resources to help support youth, their families, and health care professionals through this important transition.

Resources on the website are designed to give youth more choice and control throughout their health care transition. Examples include helping youth gain an understanding of their legal rights and responsibilities in a health care setting and supporting them to lead appointments and at-home health care routines. The website’s data section shows that only 14% of youth with I/DD receive health care transition preparation and guidance from their doctor.

The site also includes resources developed by Center partners, including Family Voices, Got Transition, SPAN Parent Advocacy Network, and two AoD-funded University Centers of Excellence in Development Disabilities (UCEDDs): the Institute for Human Development at University of Missouri-Kansas City and the Waisman Center at the University of Wisconsin-Madison. Both of these UCEDDs have done extensive work in the field of health care transitions for youth with I/DD. 

The Center for Transition to Adult Health Care for Youth with Disabilities was established through a five-year cooperative agreement awarded in September 2021. The project is funded under the Projects of National Significance within the Developmental Disabilities Assistance and Bill of Rights Act. 

For additional information, contact Dana.Fink@acl.hhs.gov