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.

Meet Randi. This advocate extraordinaire believes that everyone has a right to make choices and encourages people to keep asking questions. When she’s not busy advocating, she loves traveling to different places. We are so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

Randi has Cerebral Palsy. She shares that she is a twin, and my little sister has Down Syndrome. She explains that they’ve been navigating the system for a long time. “We've come so far but we have so far to go. I do this stuff so it's easier for other people,” she tells us.

Randi currently serves as the secretary for the Independent Living Council of Wisconsin. She explains that she joined to raise awareness about Independent Living Centers and what they can do to help people with disabilities.

Randi has over 20 years of active nonprofit experience creating donors and business contacts with a variety of organizations and professionals in the community, for-profit and nonprofit areas; she has nine years of experience in building relationships with diverse populations and partner agencies during her active involvement with the Disability Program Navigator Project and the Department of Workforce Development. She also been an advocate and a support broker for almost three years. 

How are you involved with self-determination? 

Randi realized that people don't always get a choice and she believes that anyone that wants to direct their life should be able to. “It's not my job to decide for someone; it's my job to help them get where they need to be and where they want to be,” she says. 

Why did you join the SD Network? 

Randi joined the Network to help others and share her knowledge of the system, so that  when she’ not here, there's always someone else that knows how to navigate something. “The only way to do that is to train people and to share,” she explains. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Randi loves to see that more and more people choosing what they want; they're not just accepting “well, I'm disabled this is what I get.” She thinks that has to be due to our work in Wisconsin.

What tip or resource would you like to share with people who want to be more self-determined?

Randi encourages anyone who is having trouble getting what they need or accessing what they need to use social media to ask questions. Facebook or Instagram—she doesn't care, but she suggests that people get in touch with someone if they need help. Keep asking questions; if it doesn't feel right, keep asking questions,” she says.

What are some of your hobbies?

Randi enjoys traveling to different places and doing crafts with her sister.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

About the Project

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