Health Care

Transition planning should include a plan for continuity of care with pediatric providers until adult care is established. The transition coordinator should help facilitate your own self-management of your health care, facilitate referrals to appropriate adult providers, and ensure that there is a transfer of medical records.

  • From an early age, you should be encouraged to participate in discussions about your health and eventually (no later than 14 years old) have alone time with providers
  • As you begin to show an interest and ability to advocate for yourself about care and needs, then you are ready to begin to move from family-centered pediatric to patient-centered adult interactions
  • Sensitive topics are more common in your adolescent and young adult years and may include discomfort, anxiety, coping, and loss, and should be assessed and addressed with professionals. Discussing these topics out in the open, with your neuromuscular team, will allow your team to work with you to access additional medical or supportive services that you may need
  • It is important for you to communicate your personal values and preferences about health with your neuromuscular team. Parents and providers can help you in advance care planning as you begin to consider critical medical care choices into adult life