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.

PAVE also has a Healthcare In Transition article that will give you detailed information for individuals transitioning from Pediatric (Children’s) to adult health care including information on health insurance and providers.

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

Including Health Considerations in the Transition Plan

Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.

Including Health Considerations in the Transition Plan

OSPI Provides Guidance for Families

The Office of Superintendent of Public Instruction (OSPI) is the agency responsible for oversight of all public schools and non-public agencies in Washington State. In addition to supporting schools, OSPI provides resources and support directed toward students and families.

OSPI upgraded its website (k12.wa.us) in July 2019. The home page provides news about current events, a calendar, and an option for Parents and Families to seek resources specific to their needs and concerns.

The Parents and Families section of the website is divided into three categories:

  • Learning, Teaching, & Testing: Information about graduation requirements, learning standards, testing and more
  • Data & Reports: Access to data specific to a school or district, financial reports and guidance about the Washington School Improvement Framework
  • Student & Family Supports: Special Education guidance and information about student Civil Rights, how to file a complaint, health and safety, English Language Proficiency (ELP) and more

Under Guidance for Families: Special Education in Washington State, the website provides this statement:

“The OSPI Office of Special Education aspires to ensure students with disabilities receive Free and Appropriate Public Education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA). About 14 percent of students overall receive special education services in the state of Washington.”

Linkages through the Special Education section of the website provide information on a range of topics. Here are a few examples:

  • How Special Education Works
  • Laws and Procedures
  • Parent and Student Rights (Procedural Safeguards)
  • Making a Referral for Special Education
  • Individualized Education Programs (IEPs)
  • Placement Decisions and the Least Restrictive Environment (LRE)
  • Transition (Ages 16-21)
  • Behavior and Discipline
  • Disagreements and Disputes related to Special Education
  • Special Education Advisory Council (SEAC)

Each section includes state guidance under the rule of federal law (the IDEA) and provides linkages to other resources within and beyond OSPI.

A Need Assistance? link on the Special Education page provides contact information for the Special Education Parent Liaison, available as a resource to parents in non-legal special education matters. According the OSPI’s website, the liaison “serves as a neutral and independent advocate for a fair process.”

“The Special Education Parent Liaison does not advocate on behalf of any one party. Rather, the Parent Liaison exists to address individual concerns about bureaucratic systems and act a guide for anyone attempting to understand and navigate various special education or school district processes and procedures.”

To contact Scott Raub, the Special Education Parent Liaison, call 360-725-6075 or submit a message through OSPI’s Contact Us web page.