Transitioning to Adulthood with a Disability: Leaving Pediatrics

When you’re disabled, moving on from pediatric healthcare can be pretty scary. For my entire childhood, I had been regularly treated by a team of doctors; first at the Izaak Walton Killam (IWK) in Halifax, Nova Scotia until I was six, then at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Ontario, until the age of eighteen.

One of the biggest upsets of leaving pediatric care behind can be losing the large network of doctors and specialists you’ve dealt with over the years. So, while you can, it’s a good idea to see if your current doctors can refer you to adult specialists. Some of these referrals will work out, but some of them will not. If something isn’t working for you, remember that it is your health, and you have the right to look elsewhere.

If you aren’t quite at the stage where you’re comfortable with dealing with new doctors, one solution is to ask any of your pediatric specialists if they would be able to continue seeing you. Sometimes, this is an easy way to go. It can save you from the long wait lists that come with certain specialist, and you already know each other, so there isn’t any need for long discussions about medical history. In a couple of cases, this worked out for me, and I still see the same dentist and orthotist as when I was younger.

Another good source for help at this time is your family doctor. Keep them in the loop as to what is going on with your transitioning, and ask them if they might be able to help you coordinate things with your other doctors.

Unfortunately, there will be times in this transitioning phase when you may feel lost, like waiting for referrals or trying to explain your lengthy medical history to new people. During these times, it’s good to be prepared. If you can, ask your doctors for a copy of your medical files. This may sound like a tall request at first, but legally, they are yours. Something you can do on your own is to create a medical spreadsheet. Include doctor’s name and contact information, disabilities, ailments, names of medications you take and their proscription numbers if applicable, and any other information you think is important to your health.

With a little advanced planning, and some patience, you’ll be able to transition to adult healthcare with little worry.

Next month: Entering the adult healthcare system.
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SCLAIMER: The legal details associated with some of the following topics apply to my personal experiences, and may differ from place to place. Consult with local professionals for specifics.

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