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Building Self-Advocacy and Self-Care Management Skills

Transition is a time when many young adults become increasingly aware of their disability. Youth, including those with disabilities, also begin seeing themselves as adults. They want to participate in conversations with their physician and should be part of the decision-making process.

It is important to discuss how your son or daughter’s special education team and medical providers can incorporate specific health goals into the scope of education and health transition planning – including self-advocacy and decision-making skills. This section highlights what families can do at home to build self-care, self-management, and self-advocacy skills. Parents and youth both have central roles to play.

Building Self-Advocacy Skills at Home

Each clinic visit offers an opportunity for your youth to build self-advocacy skills and become more involved in managing his or her ongoing health and wellness.

Transition Health Plan for Youth with Disabilities and Their Families

This form is designed to help transition-age youth with disabilities and their families plan for youth to assume greater or full responsibility for their adult health care.

Key Questions for Youth

The following list of questions provide you and your teen with a starting point for assessing your teen’s health-related self-advocacy skills. Once you know the answers you and your youth can build on their current level of knowledge and abilities.

Answering these questions with your young adult will help you identify and prioritize health-related goals to work on together.

Skills and Abilities to Focus On

Young adults transitioning to adult health care providers need to develop certain self-advocacy, self-care, and self-management skills:

  • Ability and willingness to tell the doctor about their history, current symptoms, lifestyle, and self-care in just a few minutes (including carrying their own records and a summary of their medical history).
  • Ability to ask questions about his or her condition and how it will affect school, work, recreation, and social life.
  • Ability to tell the doctor about his or her needs for education, technology, and accommodations and discuss how their condition affects or might be affected by these.
  • Willingness to follow medical recommendations that have been mutually developed by youth with their doctor.
  • More independence in following up with referrals and communicating with medical and insurance providers.
  • More involvement in keeping yourself well
    • diet and weight control
    • exercise and recreation
    • following medication
    • treatment and hygiene regimens
    • limiting risk-taking behaviors (such as drinking alcohol, smoking, taking non-prescription drugs, or unsafe sexual practices)
    • getting help when you feel angry, lonely, or sad for long periods.
  • Being more aware of their physical and mental symptoms and health needs and informing your doctor before they have a serious medical crisis.
  • Developing a plan for when you need emergency care:
    • when to consult with the doctor
    • what hospital to report to
    • what care he or she wants and does not want

Adapted from Finding and Using Adult Health Care KY Commission for Children with Special Health Care Needs KY TEACH Project

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