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

Disability and Sexual Health Education

A Brief Overview

  • Sexual education is a legal requirement in Washington State. Read on for information about what the state requires and resources for supporting a child to learn developmentally appropriate information related to health and sexuality.
  • The state provides a Sexual Violence Prevention website page with information about work underway toward the prevention of child sexual abuse.
  • Helping young people talk about sexual consent can support students in learning to make healthy choices that serve them for a lifetime. Rooted in Rights of Washington offers a step-by-step guide for talking about consent with youth with disabilities.
  • May is Sex Ed for All Month. Sex Ed for All Month is an opportunity to raise awareness and call for real investment in sex education in schools and communities across the country. Sex Ed for All Month is coordinated by the Sex Education Collaborative, in collaboration with a national coalition of sexual and reproductive health, rights, and justice organizations committed to ensuring equitable and accessible sex education for all young people nationwide. For resources, visit The Healthy Teen Network
  • For a library of resources, visit the Parent Center Hub: Sexuality Education for Students with Disabilities.

Full Article

Parents or guardians are the first and primary sexual health educators of children. What parents and caregivers believe, say, and do can have a powerful influence on the development of healthy sexuality in children. This article provides resources to support healthy sexuality for families and youth, including standards and instruction that align public schools with state laws.

Washington state law requires schools to provide education about the life-threatening dangers of HIV/AIDS, its transmission, and its prevention. HIV/AIDS prevention education is required to begin by grade 5 and is provided annually, in accordance with the AIDS Omnibus Act (RCW 28A.230.070). The state’s model for providing this education is called the KNOW Curriculum, developed for grades 5-8.

The topic of child sexual abuse prevention is addressed by Erin’s Law (HB 1539), passed by the WA legislature in 2018. The bill named the Office of Superintendent of Public Instruction (OSPI) as the lead agency tasked with reviewing curricula and assisting the Department of Children, Youth, and Families (DCYF) with developing a coordinated program for the prevention of child sexual abuse in grades K-12. OSPI provides a Sexual Violence Prevention website page that includes information about work underway.

Inclusive comprehensive sexual health education (CSHE) is required in Washington schools, beginning with the 2022-23 school year. Planning and implementation has been underway since 2020. Instruction must be consistent with Health Education K-12 Learning Standards, which provide a framework for comprehensive instruction, and the provisions of RCW 28A.300.475.

For students in grades 4-12, CSHE is defined in the law as “recurring instruction in human development and reproduction that is medically accurate, age-appropriate and inclusive of all students…using language and strategies that recognize all protected classes.” Disability is a protected class. Therefore, CSHE offered to students in grades 4-12 must be inclusive of disability.

Instruction for students in grades Kindergarten-3 is defined in the law as Social-Emotional Learning. This instruction is not focused on human development or reproduction.

CSHE that addresses consent and provides opportunities for developing communication and decision-making skills can support students in making healthy choices that serve them for a lifetime. Consent is defined as granting permission for something to happen or agreement to do something. Consent is important to understand in the context of sexual activity. Rooted in Rights of Washington provides written information and a video within its step-by-step guide for talking about consent with youth with disabilities.

Dating and sexual intimacy are subjects that can be addressed through Supported Decision Making, a legal option in Washington State. Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making (SDM) as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The format for an SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org.

The state has developed curricula and teaching tools that address the many facets of human relationships, from developing social skills and friendships to assuming responsibility for one’s own body, including sexuality. Find these resources on OSPI’s website page called Sexual Health Education.

The Center for Parent Information and Resources provides a library of resources, including several related to the role of parents: Sexuality Education for Students with Disabilities.