The transition process involves working with you and your child to prepare for the change from a pediatric model of care (where parents make most of the decisions) to an adult model of care (where the patient takes responsibility for decision-making). This process requires collaboration and communication among the patient, the patient’s family, and the healthcare teams.
The transfer includes identifying an adult provider, collecting and transferring all appropriate medical records to adult providers, and communicating to the adult provider the unique needs of the patient. Teamwork and communication are essential as the transfer of care gradually connects the young adult with his or her new healthcare team.
How to prepare
As your child enters the teen years, your medical team will spend more time talking with your child individually without the presence of caregivers. Many young adult patients still may choose to continue to involve their families in their healthcare decisions, but the team will encourage your child to become more involved in his or her own medical decisions and health management in preparation for taking primary responsibility for their healthcare. The process depends, of course, on a person’s developmental preparation to take on his or her own healthcare management.
During visits, older children and adolescent patients will learn more about their medical conditions, their medications, and the tasks associated with taking care of their health, (such as scheduling regular clinic visits and ordering prescription refills).
Parents and providers will need to offer support and answer questions as needed. Children best prepare to take on the primary management of their illness when they are encouraged to ask questions and take on an active role.
Caregivers can have teens play a role in scheduling their own medical visits.
Caregivers and teens can spend time discussing the division of responsibility for healthcare tasks.
Caregivers can gradually increase the expectations for adolescents’ responsibility in their healthcare while continuing to supervise these tasks.
Timeline for transitioning to adult care
The timeline and age of transition may vary by patient, specialty clinic, or readiness. Some clinics may be flexible in their approach to transferring care and others may have more strict guidelines. Make sure that you talk to your clinic about their policies and procedures related to transition to adult healthcare. Below are some general guidelines that may help with the transition process:
Between the ages of 13 and 16, parents, providers, and teens should begin discussing readiness for transition and encourage increased independence.
By 18, young adults should be fully involved in their own medical care. Adjustments will be made as needed for youth with conditions that prevent them from making healthcare decisions.
Most young adults will successfully transfer to an adult healthcare team, but some young adults may be able to continue to receive some medical care in a pediatric facility while additional care may take place at an adult healthcare facility.
How is adult healthcare different?
Below you will find some of the things that our young adult patients mention about the differences between pediatric and adult healthcare:
- Young adults must schedule their own appointments.
- Adult healthcare providers will support and manage care, but young adults are primarily responsible.
- Young adults are responsible for their own finances and payment.
- Young adults need to know about their healthcare coverage.
- Young adults must request their own treatment information.
While most young adults say they are ready for these differences, many will need additional support during transition. We recommend that young adults reach out for help from their friends, family, and psychosocial providers if they are struggling with the transition process.
When patients turn 18, they take charge of making their own healthcare decisions, and they become — legally — the only person who can access their medical information, unless other plans are made. Young adults ages 18 and older become the sole decision-makers about their healthcare and the sharing of personal health information. Only with the young adult’s written permission can healthcare providers discuss any personal health information with family members. There is a range of options for assistance in decision-making after age 18 (the least restrictive is a signed consent form at the hospital, and the most restrictive option is legal guardianship). If young adults need support in making healthcare decisions, disability groups in each state can help guide you to free or inexpensive legal resources.
Need additional support around transition?
Transition can come with additional stress and challenges for some teens and families. Consider reaching out to your medical team to obtain additional support, particularly the psychosocial providers on the team. If teens are having significant difficulty with aspects of the transition process (such as adherence, emotional health, coping with diagnosis), it may be helpful to consider working with a pediatric psychologist, social worker, or other behavioral health provider to gain additional support and develop strategies to cope with these challenges.
Family Resource Assistance
Our Family Resource Liaisons are master’s level clinicians who are available to help individuals and families navigate the mental healthcare system by providing contact information for mental health resources in your community.
Family Resource Liaisons are available by phone at 720-777-4978, Monday through Friday, 8 a.m. to 6 p.m.
Check out our Parent Toolkit to get more resources for maximizing your child’s health.