by Terry Forlenzo
Center for Transition to Adult Health Care for Youth with Disabilities
Family Voices is now in the fourth year of a five-year project funded by the Department of Health and Human Services. In collaboration with Got Transition, SPAN New Jersey, the University of Missouri-Kansas City, and the Waisman Center, Family Voices developed the Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center focused entirely on health care transition.
The goal of this project is to support youth and young adults with intellectual and developmental disabilities in moving from pediatric to adult health care without losing quality, coverage, or continuity of care, and to help them build the skills and confidence to claim agency over this transition in ways that are meaningful to each individual.
A Website Designed with Families in Mind
As a culminating product of the Center for Transition program, the project team has launched a new website that brings together nationally-relevant resources for youth with disabilities and the people who support them. Everything on the site was chosen thoughtfully with families in mind.
Resources are organized into three main categories:
- Youth and Young Adults
- Parents and Caregivers
- Clinicians and Direct Service Providers
Users can explore the site through one or more of these lenses. A young person can find tools and resources meant just for them without having to sift through information that doesn’t feel relevant or accessible. Parents can explore caregiver resources, youth-focused tools, or both, and then review them together with their child. The site is designed to support both independence and collaboration.
To support many different kinds of learning, we included many different kinds of resources as well. Interactive workbooks, short quizzes, videos, and toolkits are present across all three resource categories.
Understanding Legal Changes at Age 18
One topic that came up frequently in our conversations with youth advisory groups was lack of clarity around what happens legally at age 18. Many young people shared that they did not receive enough guidance from medical providers about how their decision-making and privacy rights would change or what supportive options were available.
In response, the project team compiled a dedicated set of resources focused on legal transitions in health care. These materials explain:
- How decision-making rights change at age 18
- Different ways to structure support
- How to maintain health insurance coverage during health care transition
Our goal is that these resources help youth and families understand their options and choose what fits best for them.
Practical and Comprehensive Toolkits
Family Voices also partnered with LifeCourse Nexus, SPAN, and Got Transition to create six practical toolkits, each focused on a key part of health care transition:
- Understanding Health Care Transition
- Knowing About Your Health Care
- Leading Day-to-Day Health Care Routines
- Understanding Your Legal Rights in Health Care Settings
- Leading Your Health Care Visits
- Planning for Moving to Adult Health Care
Each toolkit includes:
- A Side-by-Side Guide, designed for youth and supporters to explore together;
- An EZ Reader, with simplified language and pictures;
- A Tool, offering interactive activities to build skills and familiarity; and
- A Tip Sheet, to support the user’s understanding and utilization of each resource.
These toolkits are meant to be flexible and approachable, meeting youth where they are and growing with them as they build confidence.
A Transition, Not a Cliff
One of the most important messages behind this project is that health care transition is not a swift hand-off moment. We see this stage as exploratory, and distinct from both childhood and adulthood. During transitional years, responsibility can be shared, practiced, and gradually shifted. This approach allows youth and young adults to build confidence and capacity over time, learning what works for them with support nearby. Families and providers can support this growth by working together, adjusting supports as skills develop, and creating space for youth to lead.
Terry Forlenzo (they/them) is a Family Voices intern and a second-year student in the University of Connecticut’s Master of Social Work Policy Practice program. Their work focuses on supporting youth in educational environments, particularly where gender, sexuality, and disability intersect. Terry is committed to advancing LGBTQ+ inclusion, disability justice, and equitable school policies that create inclusive and accessible learning communities. They bring experience in both direct service and advocacy, grounding their policy interests in the lived realities of young people and families.
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