Healthcare Transition and Medical Self-Advocacy

When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.

In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

For more information and resources around healthcare transition and self-advocacy, follow these links to the Family to Family Health Information website.

Another place for information is the Informing Families website, which includes a section called got transition.

Life After High School: A Two-Part Training to Help Families and Young People Get Ready

Making the move from high school to what happens next can be confusing. Making that transition during a worldwide pandemic has added challenges. This training provides key information for families to ensure that school-based services are providing what students with disabilities need to launch adult lives that meet their goals for further education, work, and independent living. Attention families with younger children: It’s never too soon to start learning this information!

Part 1 of this two-part presentation provides foundational information about the rights of students with disabilities, with some content related to COVID-19. Students with disabilities are entitled to a Free Appropriate Public Education (FAPE), and that includes a well-planned journey through school, graduation, and whatever happens next. Accessibility and equity are rights throughout school and adulthood. Look and listen to learn more.

Part 2 provides key information about tools for students moving toward graduation and beyond. For example, IEP transition planning is linked to the High School and Beyond Planning process for Washington students. This training provides information about service agencies that support students while they are in school and into adulthood, with resources and places to go for further support and information.

Families and young people can reach out for individualized assistance from our Parent Training and Information (PTI) staff at PAVE. Click Get Help or call 800-572-7368.

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