Thursday, August 19, 2010

IFSP meeting

Our IFSP meeting was this morning. In a nutshell, blah.

I got a copy of Emily's report on Finn at the meeting. I'll just say what I always say: it's disheartening to see your child reduced on paper to numbers, scores, and percentages. None of it was a surprise; I know that he's delayed in all areas, and I really feel like I've made my peace with that. Not that he's not doing great! He really is, and he's making strides all the time. Still, seeing someone else's assessment of your child just kind of stings.

Our meeting this morning was with our new service coordinator, Celina, who was very, very nice, very thorough and professional (and very young!).

Emily is, of course, recommending that OT continue once a week. Rebecca, our SLP, has not submitted a report, as her contract is not up yet. Celina informed me that we are, in fact, being required to submit request for coverage of services to our private health insurance carrier, contrary to what our former SC, Amber, told me when I last spoke to her. Apparently, Amber just decided to give me part of the story, and then she bailed on us. Nice.

So here's where we're at: Regional Center apparently never did approve funding for in-home OT for Finn past the end of their current contract with Emily, which is now at an end. They did approve funding for in-home speech therapy for Finn, but only for a short-term contract, which is up in October. Amber never told me any of that. She just told me that Regional Center had taken my concerns into consideration and decided to make an exception and continue to allow us in-home therapy.

So as it stands now, they will be submitting a request to our insurance carrier to cover OT. If our insurance carrier approves it, they will NOT cover Emily, nor will they cover any in-home therapist; they will only cover clinic-based therapy, which will mean having to take Finn somewhere else for therapy amidst all the other responsibilities I have with all the other kids, and paying a $20 co-pay per therapy session. The same will go for speech therapy when that contract is up in October. If our insurance company denies coverage, then Regional Center will continue to provide the services, with the therapists, that Finn has been receiving.

I've already made my decision: if we are forced to utilize services through our insurance carrier, I'm opting out. Trucking across town for group therapy and paying twenty bucks a pop for the privilege is just not practical for us, and I honestly can't see the justification. While I think he benefits from therapy to a degree, I absolutely don't think that the benefit is so great as to justify that kind of expense, inconvenience, and disruption to our family routine. I just won't do it. And I won't feel guilty about it, either.

Over time, I've come to see therapy and the service industry as more and more of a trap. They convince you that your child needs to be in the system, needs the therapies, that therapy is the main thing that is going to make this major difference in how productive and "high-functioning" your kid ends up being. And after convincing you that therapy and services are an integral element in your child's success, it turns out that they can't or won't provide said services anyway. It's all a myth. You can spend your kid's childhood therapizing the shit out of them, and it's not going to guarantee anything - it doesn't guarantee that they're going to master this or that at any prescribed time, and it certainly doesn't guarantee that they're going to be independent adults one day. Their capabilities are hard-wired into them from birth - that's what I think. Therapy may give families tools to assist their children in developing certain skills, but I am not at all convinced that therapy is what is making the major differences in our kids' lives. Love and inclusion and good health care are the things that have changed the quality and longevity of people's lives who have Down syndrome.

So anyway. Like I said, blah. Feeling kind of cranky about the whole thing.


Sweet Pea's Mommy said...

Sorry to hear you are having to go through insurance after all. I can't believe your old SC would do that...actually, knowing the RC system in CA as I now do, I do believe it! I hope that your insurance doesn't cover it. We are going through insurance for speech twice a week and it's a pain to travel 25 minutes each way to do it. I think the in-home is much better all around, but with the aspiration I don't think speech is something we can pass on.

BTW, I think Finn is doing great and I always love to see what he is up to!

Cory said...

I totally agree about all the therapy hype. We tried an OT/PT group for River one time and I was like "enough". Otherwise he has just had a teacher come out from Regional and that is it. I do have PT, OT, and ST check in with us from time to time, but they are always as unconcerned as I have been. That is NOT the same as uncaring by any stretch. We LOVE River with all our hearts, but he is totally impressing us and we are happy with his development. Cheers to knowing yourself, and the need's of your family... and being OK with that. :-) I believe that inclusion DOES make ALL the difference.

Jen said...

I am sorry to hear of your experiences with Finn. It is amazing how much each state varies in their treatment of early interventions. Fortunately, in Pennsylvania it is all covered and we have had (so far) good experiences. I can see how not having access/easy access to therapies makes it difficult to justify continuing with them, especially with other children. Finn looks amazing, and I enjoy following your blog, as my LO is just now 17 months and her "entourage" has increased to PT, OT, and DT. Phew, makes me tired just thinking about it! Good luck.

Mel said...

I hate bureaucracy and all that rubbish. But we attend a centre and I think one of the best things is the friendship Luke gets and the support I get from other mums who get it. Hopefully these will be life-long friendships that will see us through the tough times when the high school kids suddenly get too cool to want to hang out with Luke. That's the plan anyway.

Johnna said...

Those meetings can be so brutal! I can't think of any other situation in life like them. I have a friend who will not even schedule the IEP meeting at school without having all the test results and reports mailed to her first. She takes a few days, looks over them, gets through her emotions, then makes a plan. When she goes to the meeting, she is no longer overwhelmed by the numbers/levels on paper and can be bold and forward thinking, with her requests for them in hand. They have a way of sedating the parents with that info, then controlling the meeting. I think she has a smart plan!

P said...

I may have heard that you are supposed to have all the info in advance for the meeting. And don't ever sign it there! Think about it every time and say when everyone is supposed to get back in touch with a set date.

What about Fighting for a respite worker to take him to therapy? Fight to keep the services without insurance due to hardship. What if you were a single working mom? Seriously, you might as well try if you are losing it all.

And argue that the time period of missed services should be all that is missed, the state should not benefit cause people are too poor, swamped and distraught to drive all over creation for services. Especially in Southern CA, traffic is unpredictible and impossible (due again to state service). Hmmm I see a big lawsuit!

Get what he needs and attend as you can, if that works. Everyone will want to be in your group.

Let us know if we can help, I'll go to an IFSP. Therapy is an art, all takes time but nothing works if mom is worn too thin to give her love as that is most important.

I'm Down with You there (see those videos). Love from all around gets us through this crazy ride called Life.

Do your best, have Faith and Hope. You can and do do it every day.