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.
Sigh.
Adieu
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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 ...
13 years ago
9 comments:
I don't have any advice. Kira is only behind on speech and if you factor in sign language - her language development (cognitive) is age appropriate.
We're actually in a similar place right now. Down syndrome dx alone qualifies her for ECI. There's a chance she won't "be delayed enough" for PPCD (3-5 yo program). That would mean no services for two years, if she doesn't qualify. Whenever I tell people that, they get all excited for us. It is exciting, of course, but also really scary.
So, yes, Finn could happily continue developing right along his age appropriate timeline. That's been our experience, so far.
Do you think they'd be willing to pay for a consultation from that program and then you could get some ideas to use on your own? Most of what our kids benefit from is via their parents and home environment I think- alot of what is done isn't rocket science, just specific knowledge that can be taught and shared?.
In PA, Goldie can qualify based on a 25% delay or clinical opnion of a therapist. At 6 mo she didn't qualify for PT based on a delay, but we were able to get it anyway.By 12 months she was delayed because she wasn't walking. When a child has a dx that puts them at risk for delays they should be proactive with services.
Ask the SC if Federal money is available. At one point Goldie was "delayed enough" in two areas so she qualified for what they call a waiver. It switched her funding source from our county to the federal government. It also allowed more than one therapist to visit at a time. This may sound silly, but one of the reasons she qualified is because she has never taken a bottle and that gives her a low adaptive score.
In NY they do provide therapy based on DS diagnosis alone, but not much (just PT & maybe speech if there are feeding issues) until age 1. At age 1 they add OT and Special Instruction, but not before then. I really don't think there's anything special about infant stimulation that you aren't already doing.
My E didn't quality for OT, PT, or Speech as a baby. She barely qualified for anything at all. At which point we opted out of EI in year two. In year three we had a very disappointing pre-school year to which I pulled her out early. This year we are back home in Iowa and it has been an amazing preschool year. Although she still does not get PT, OT, she does get speech now.
I guess my point is that I used to beat myself up about how little she received in terms of services, then I realized that I should worry too much. She met all her milestones on time, she's completely potty trained, and she is learning. She isn't talking or communicating like most so-called typical kids, but she is learning.
I was so impressed with her year at preschool that I opted to keep her there one more year.
Anyway... I guess what I'm saying is that it sounds like Finn is doing well. Don't stress about what he isn't getting now. I know everyone makes a huge deal about how important all the EI stuff is, but honestly E is doing so well, and she didn't get most of what she could have had in some districts and states.
I don't know if I'm making any sense at all, I'm so sleepy, but I think you will understand what I mean. Off to bed.
I know nothing of California, but at my job in Illinois, I encourage families to contact their legislators to advocate on their behavior to the state when it comes to funding. Many times, just a call from them to a funding source kicks them into gear. We elect them and they are supposed to be there for us, so why not tell them directly what you need. I've also had parent take their children to the legislators' office and explain in person how to help.
I must really be out of it, I have never heard of those services. We have a Nurse and a PT come in every month and now they are going to start with a OT consult to see if he needs it. I know he will fall behind if he hasn't already but we will just keep plugging along the best we can. I guess I need to look into all this stuff.
Yeah - we're totally in the same boat. S is doing really well and, therefore, we get dick from the county. And it's that horrible catch 22. Do I want her to be more delayed? Or am I happy that she's not, but not getting services? I guess I'd prefer the latter, but we also supplement with private PT, OT and ST to avoid the former.
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