- Develop and regularly update the plan of care, including readiness assessment findings, goals and prioritized actions, medical summary and emergency care plan, and, if needed, a condition fact sheet and legal documents.
- Prepare youth and parent/caregiver for adult approach to care at age 18, including legal changes in decision-making and privacy and consent, self-advocacy, and access to information.
- Determine level of need for decision-making supports for youth with intellectual challenges and make referrals to legal resources.
- Plan with youth/parent/caregiver for optimal timing of transfer. If both primary and subspecialty care are involved, discuss optimal timing for each.
- Obtain consent from youth/guardian for release of medical information.
- Assist youth in identifying an adult provider and communicate with selected provider about pending transfer of care.
- Provide linkages to insurance resources, self-care management information, and culturally appropriate community supports.
Planning for transition as a collaborative and continuous process with youth and families is the fourth element in these health care transition recommendations. It encompasses several activities. To begin with, it is important to develop and regularly update a plan of care that identifies the transitioning youth's priorities and addresses how learning about health and health care can support their priorities. In addition, to further youth's independence, developing and sharing a medical summary and emergency care plan, and establishing linkages to community-based supports is also important. Starting at about age 16, providers should assist youth and families in preparing for changes in decision-making when youth legally become adults at age 18. For some youth and families this may require referring them to legal resources about supported decision-making, and for others it may require obtaining their consent to involve parents/caregivers. Finally, transition planning involves inquiring about youth's preferences for transferring to an adult provider and assisting them in this process. An up-to-date and vetted list of adult primary and specialty care providers interested in care for young adults should be shared with youth and families.