Chronic Illness, Disability, and Transition to Adult Care
Transition
Transition is a planned, longitudinal process, not a single transfer at age 18. Start by early adolescence (12–14) by building health literacy, self-management, and shared decision-making. Assess disease-specific knowledge, medication adherence, appointment skills, insurance, transportation, education and vocational goals, and mental health. For youth with disabilities, discuss guardianship alternatives such as supported decision-making and power of attorney.
Chronic illness
Adolescents with diabetes, asthma, epilepsy, sickle cell disease, IBD, cystic fibrosis, and congenital heart disease need coordinated transfer summaries, adult providers, and reproductive health counseling. Adherence often worsens during adolescence; explore barriers rather than blaming.
Traps
Do not equate cognitive disability with incapacity. Do not wait until age 18 to begin planning. Do not assume parents will remain the decision-makers. Do not ignore insurance gaps or loss to follow-up. Confidentiality and privacy laws change at age 18.
Rule of thumb
Begin a transition plan by age 12–14, update it annually, and confirm an adult provider before the final pediatric visit. A 17-year-old with type 1 diabetes should know their regimen, sick-day rules, and how to obtain supplies. Document self-management milestones.