Ten Steps to Health Care Transition

How families can help their child with special health care needs plan the move from child-centered to adult-centered health care systems.

1. Start Early! There are some things you can do to get ready for transition even when your child is very young, like starting to keep a medical summary and teaching your child about his or her health care needs.
2. Create a medical summary. Put all of the important information about your child’s health care in one place, including plans for an emergency.
3. Create a health care transition plan. Work on a written health care transition plan with your child’s primary care doctor. Start this plan by the time your child is 14 years old. Review and update the plan at least once a year.
4. Focus on responsibility for health care. Help your child understand and take responsibility for his or her health care based on age and abilities. Find out what your child knows about his or her health care needs and fill in the gaps.
5. Consider the need for additional supports. Some young people will be unable to make informed decisions about their health care in adulthood due to illness, mental illness, or a developmental disability. In Maryland, the Health Care Decisions Act allows a family member or close friend to act as a surrogate to make most medical decisions for someone in this situation without requiring legal guardianship.
6. Maintain wellness. Encourage a healthy lifestyle. Help your child start good habits that will continue into adulthood.
7. Know your child’s health insurance options. It is important to find out what types of private or public insurance your child will be eligible for as an adult. If you have already chosen health care providers who work with adults, check to see if these providers are in the plan.
8. Find new providers. Pick a primary care doctor (and specialist if needed) who works with adults. You can ask your child’s current providers for a referral. Ask local support groups or other families that you know to recommend a doctor. Ask your child’s current providers to speak with the doctor you have selected.
9. Include health in other areas of transition. Find out how your child’s special health care needs may impact his or her future and other areas of life such as independent living, work, and relationships. Consider whether accommodations will be needed in the home, workplace, etc. Ask your child’s primary care physician to provide documentation of his or her medical conditions and special health care needs for other programs or agencies as needed.
10. Celebrate moving on. Transition can be an emotional process. You may not want to say goodbye to a doctor who has taken good care of your child and family for many years. Remember that transition is a part of growing up, and all young people deserve the right to take on adult roles to the best of their abilities.