We have a wonderful Pediatrician who has seen Ciarra since before birth. He was there when we got the news she might have DS, there when we decided not to test further, and there when she was born. I treasure his advice, his groundedness, even his humorous put downs (we go back and forth). But he is a Pediatrician, and Ciarra is not going to be little forever. Already, we deal with "big kid" issues, puberty, periods, even boobs. I thought I had thought of everything. But this, I haven't thought of!
The incidence of adult disabled patients staying with their pediatricians long after their 18th birthday is one of many issues raised in a report released today by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities.
The study, "Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts," found that many disabled adults face longer waits than most people finding good internists, and that prevents them from get ting the best care for common adult conditions such as hypertension, heart disease, or thyroid disorders.
The report found that, among other reasons, many internists avoid disabled patients because of uneasiness with them.
Our Ped has seen my oldest daughter a few times, past 18. Stuff like sore throats, turned ankles, etc. We have been talking about needing to get her moved over to our Primary Care doc, my doc, but it had never occurred to me that while it might be easy for Kristin, it may not be so easy for Ciarra, when the time comes.
We still have a long time before we will need to start planning that move, but knowing that it is on the horizon gives me time to look around, make a studied decision, and prepare for possible trouble before we really need a doc that will see an adult with Down syndrome. She loves the Doctor, and has no real issues with going, but the future will hold progressively more difficult tests etc for her, and it is good to think ahead and try to be prepared.