Asking for Directions: Transition to Adult Medical Care

This week was a milestone where Andy signed into the doctor himself for the first time, signed his own medical forms to get some blood work done, and he produced his own insurance card and Medicaid card for payment. We’ve been working hard since he was 14 to gradually prepare him for this transition to adult health care, and even though he still needs helps with health management, he’s starting to take on some of these important responsibilities.

Transition to adult medical care is another important part of transition. This can be hard because children’s hospitals are sometimes a second home for those of us with children who have disabilities that involve medical issues. Our pediatricians and the specialists at those children’s hospitals often go the extra mile—dental care done during other surgeries, nurses who are particularly attentive and know how to avoid collapsed veins for blood draws, and offices that have worked with our son or daughter for years and understand their medical history and development. We often grow to love them and don’t want to move into adult care.

However, if we don’t start transitioning to adult health providers around 14, the transition at 18 or 21 can be brutal and leave us scrambling to find the best people. We also need to train our children to learn to be as responsible as possible for their own medical care and communication with physicians.

Here are some tips that have helped us start to transition to adult health care:

  1. We transitioned to a family dentist instead of continuing with the specialty dentist at the hospital when Andy was around 12. We picked someone who was a family friend and experienced with children who also provided care to adults. It was just more convenient to have our whole family go to one dental office.
  2. We started transitioning to adult specialists like the adult ENT at about 15. We did this partly because the drive was much shorter, but we also wanted to try out doctors to make sure we found someone who talked directly to Andy and who used drops before oral antibiotics for ear infections. Fortunately, we found someone on the first try, and he was great!
  3. We started having Andy sign in for doctor’s appointments when he was about 15 also.
  4. At 16, we started explaining why he took some medicines and what those medicines do to help his body. We also started writing notes to remind him to take medicine himself. (We probably should have started this earlier because he’s better at it than we are.)
  5. At 18, we started having Andy sign for his own prescriptions and medical release forms, and we explained what insurance does–“doctor visits cost money, and insurance pays for it.”
  6. Next, we are going to make a card or note on his iPhone that lists his medical history so that he can discuss that or write it down when he needs to.
  7. We’ll also be switching to an adult general practitioner this year, and we’ve been interviewing to see who might be a good fit. Again, we want someone who stays up to date with Down syndrome and treats Andy like an adult. We want to ask our pediatrician for recommendations for doctors who accept our insurance and also Medicaid.
  8. We also found these awesome resources to help with transition:

Got Transition/Center for health care transition: Fantastic comprehensive website about healthcare transition for youth, families, health care providers, and researchers/policymakers. Funded through a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.

Taking Charge of My Health: Information and resources to help teens and young people with intellectual and developmental disabilities, families and caregivers to address health issues by the Westchester Institute for Human Development and Special Hope Foundation.

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home by AAP AAP article about how to transition from youth to adult healthcare. May be helpful to share with your son or daughters medical providers.

A Person-Centered Arizona Don’t be fooled that this is just Arizona information. This site lists great national resources for healthcare transition.

MyChart App This app helps you maintain a MyChart account to manage your health information and communicate with your doctor on your mobile devices, including reviewing test results, medications, immunization history, and more and staying in touch with your physician

What are some tips you can share for transition from child to adult medical care? How did you feel as you switched?