Caregiver Support Toolkit | TRANSITION TO ADULT CARE

Moving from pediatric to adult care doesn’t have to feel like starting over

The shift to adult care is one of the most stressful transitions families face. This section helps you prepare, ask the right questions, and support your young adult’s growing independence.

PREPARE BEFORE THE TRANSITION

  • Request a complete summary of your child’s medical history
  • Ask pediatric team to recommend an adult hematologist
  • Create a “medical passport” – a one-page health summary
  • Practice letting your child speak at appointments now
  • Understand your child’s insurance options at 18/26

QUESTIONS TO ASK THE ADULT CARE TEAM

  • “How do you handle pain crises – what’s your protocol?”
  • “Do you have experience with hydroxyurea or Voxelotor?”
  • “How do I reach someone after hours if there’s a crisis?”
  • “Is there a social worker or care coordinator on staff?”
  • “Do you coordinate with mental health providers?”

KEY RESOURCES:

START TRANSITION PLANNING BY AGE 14

The earlier your child begins practicing self-advocacy, the more confident they’ll feel in adult settings. Small steps now – like refilling their own prescriptions – build big independence later.

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