I wrote a couple weeks ago about a global therapy program based in my neighborhood. I finally got a hold of the program director a few days ago and was told that in order to not have to pay for the program out-of-pocket (which she said is very expensive), we would have to get approval from our service coordinator through Regional Center. So I talked to our SC a couple days ago, who is familiar with the program, and she said she would submit my request to the research team the following day. Well, I just talked to her a little while ago, and our request was denied.
I'm so disappointed.
She said that funding is a factor (don't forget that California is in the midst of a huge economic crisis and Regional Center has had millions of dollars eliminated from their budget, so they are trying to reduce services wherever possible), but it's more the fact that their protocol dictates that a child has to have at least a 33% delay to qualify for services . . . or at least to qualify for anything above and beyond the bare minimum baseline services, which here, for a baby Finn's age with Ds, is PT one hour a week and that's it. Based on his evaluation a couple months ago, he's not anywhere near 33% delayed in any area - in fact, at 7 months he assessed at 6- and 7-month levels across the board except for fine motor skills, which I think he assessed at 4 or 5 months.
So I'm having some mixed emotions here. Of course I am happy and thankful that he is doing so well developmentally. But he IS going to fall farther and farther behind as he gets older, right? I mean, isn't that a given with Down syndrome? I know the variabilities are great among kids with Ds, but there's just no way he's going to stay on track. Right? So I guess I had just hoped to get him involved in some supplemental therapy to optimize his potential. Isn't that what I'm supposed to be doing?
Our SC said that they don't provide "preventative therapy," but rather, they provide therapy to deal with delays as needed. I guess I thought that the therapy he's been receiving - PT - is preventative, at least on some level.
I dunno. I don't mean to sound whiny and ungrateful. I'm so thankful that he's gotten such good PT already, and that he's doing as well as he is. I just thought it was my job to make sure he gets every opportunity to be the best he can be.
Anyway, she did say that we can revisit an Infant Stim program at his next evaluation, which will be when he's 13 months old. And she said that at that point, she won't have a problem really pushing for it on Finn's behalf, especially if his PT thinks by that time that he needs additional therapies. In the meantime, we're stuck with PT and PT only. No OT. No ST.
Adieu - After more than two years and 555 posts (556 counting this one!), I'm saying goodbye to Adventures in Motherhood. I'm ready for a change, and I've started ...
6 years ago