First Year of the National Health Care Transition Resource Center

Family Voices is the lead organization in ACL’s grant for Empowering Youth with Intellectual and Developmental Disabilities to Manage their Healthcare Transitions. We are developing a national resource center where youth, families and health care providers can find all the information they need to support successful health care transition. The first year of the five-year grant was a great success!

Here’s what we achieved in year one:

1. We formed a great leadership team with our core partners at Got Transition, SPAN and UMKC
2. We did a deep dive into the resources and research about health care transition for youth with intellectual and developmental disabilities
3. We recruited the Youth Steering Committee of 10 young adults with intellectual and developmental disabilities to make sure the project is youth led
4. We developed a data profile of all we know about the way young adults with intellectual and developmental disabilities experience health care transition
5. We started a national community of practice with professionals who work with youth and young adults with intellectual and developmental disabilities

What’s happening in year two? We will:

1. Work with the Youth Steering Committee to vet the resources we found about health care transition and decide which ones should be part of the center’s website
2. Expand the role of youth leaders, including adding more members to the Youth Steering Committee and starting the Youth Development Initiative for younger teens who are interested in health care transition
3. Develop an app, a website, and toolkits for youth, families and providers to learn more about health care transition
4. Focus deeply on groups who have the hardest time with health care transition, including youth with intellectual and developmental disabilities who have been involved in the criminal justice system

We’re looking for young leaders. If you know a young adult with an intellectual or developmental disability who is interested in health care and leadership, send them our way!

Learn more about the development of the National Health Care Transition Resource Center for Youth and Young Adults with Intellectual and Developmental Disabilities at familyvoices.org/healthcaretransition