Transition: Healthcare Resources
National Resource Hub for Moving to Adult Health Care for Youth with Disabilities
The Center for Transition to Adult Health Care for Youth with Disabilities offers a wide range of tools to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12 to 26 to direct their transition from pediatric to adult care. This national site is a one-stop shop where young people and their families, clinicians, and direct care providers can find videos and other resources for understanding and navigating the transition to adult health care.
Site resources include:
An “Introduction to Health Care Transition (HCT)” for youth and young adults
Videos and interactive quizzes
Changes in insurance and legal rights
Quick guides and infographicsNavigating Health Insurance and the Health Care System
The Patient Advocate Foundation (PAF) provides valuable information and understanding to patients navigating the healthcare system.
PAF’s Education Resource Library offers information on a wide variety of individual health and health insurance-related topics including:
Finding and Selecting Insurance
Making the Most of Your Health Insurance
Engaging with Insurers: Appealing a Denial
Patient Advocate Foundation Drug Formulary FAQWatch their short tutorial “Welcome to the Education Resource Library” to learn how to find and share materials. Many of the materials are available in English and Spanish.
PAF is also available by phone Monday – Friday, 7:30 a.m. – 4 p.m., at (800) 532-5274.
OutCare aims to be a comprehensive resource for LGBTQ+ healthcare, offering provider and healthcare resource directories.
OutCare’s provider directory provides a list of providers who understand LGBTQ+ needs.
PACER’s National Parent Center on Transition and Employment
Information and resources for families of youth with disabilities on transition planning, civil rights, work-based learning, higher education and more.
PACER’s Transition Health Plan for Youth with Disabilities and their Families
PACER’s Transition Health Plan for Youth with Disabilities and Their Families is designed to help parents and youth assess where they are at and plan next steps to prepare youth to take on more responsibility for their own health care.
A portable medical summary is helpful for summarizing your medical information in one to two pages. You can use this summary across healthcare systems, including:
With the emergency department
In the transition to adult providers
With your college campus health services and moreThe summary can help provide quick and concise communication with all providers involved in your care as you transition to adulthood.
Preparing For College When You Have Congenital Heart Disease
Going to college is an exciting time filled with new friends and experiences. When you have congenital heart disease (CHD), it can be overwhelming or tempting to put your care on the back burner. It’s very important that you stay in care and are as prepared as possible.
The Adult Congenital Heart Association provides this resource with tips to help you maintain good health while you further your education.
Resources to Understand and Maximize Your Health Coverage
The Centers for Medicare & Medicaid Services has developed the Coverage to Care (C2C) initiative. C2C provides information to help you understand your health coverage and connect to primary care and the preventive services that are right for you.
Resources are provided in multiple languages and on topics including:
Five steps for making the most of your health coverage
Telehealth services
A step-by-step roadmap to health
A companion roadmap to behavioral health
Videos on maximizing your health coverageSelf-Advocacy for People with Disabilities During Hospitalization Tip Sheet
Hospital stays can be difficult for everyone. However, individuals with disabilities may face a variety of unique challenges. This Self-Advocacy for People with Disabilities During Hospitalization tip sheet includes information about your right to have a support person with you any time in the hospital, provider bias, preparing for your hospital stay and self-advocacy resources.
Special Olympics School of Strength
Special Olympics has created a fitness video series in partnership with WWE for Special Olympics athletes, led by Special Olympics athletes. The fitness campaign targets athletes in their teens and late 20s and features four workout videos with varying levels of difficulty in flexibility, strength, balance and endurance exercises encouraging athletes to commit to a lifetime of fitness habits.