Monday, February 02, 2009

and here I thought I had thought of everything...

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.


luberman said...

There is such a need for physicians, specialists and dentists to receive additional training so they can treat adult children with intellectual and other developmental disabilities. They have a right to health care just like anyone else.

Doctors, I suspect, don't like the idea of spending perhaps 20 minutes with a patient on a cold or other routine matter, because they probably could see 4 patients in that amount of time.

Rebecca said...

I have a long time before I have to worry about this issue, but it is an issue.

What great photos of your daughter. I need to figure out how to do that on my blog.

My name is Sarah said...

This is Joyce. Oh how I relate to your fears. We were in the same place. I kept her with her pediatrician until he announced his retirement when she was 17. After long thoughts, I decided rather than find a new one, I would try Sarah with my doctor, even though I hardly ever go to the doctor. They had a great connection at their first meeting and everything was going well. Until Sarah was transported by ambulance a few months later because her airway collapsed. The hospital would only admit her to the pediatric unit where my adult doctor does not have priveleges. It worked out ok because I know the medications and treatment Sarah needs for that issue, but it did make me ponder what if it had been something new.

Not to add more to your plate, but the first thing admissions required from me was a document stating I had legal power of attorney or guardianship because she was 18. HIPA has made that a necessity now. I suspect changing doctors after the 18th birthday might force that as well.