Tuesday, July 22, 2008

Intensive Therapy: Out of the Starting Gate

Finally, finally! Yesterday morning Joy had her very first session of state-funded intensive autism therapy, almost nineteen months to the day after receiving the diagnosis of autism (just before Christmas, December 2006).

The first time we visited her primary care pediatrician after the developmental pediatrician made the pronouncement, she told us that we were fortunate that Wisconsin has such a fine program for intensive autism therapy.

Well, yes and no.

There's indeed a fine program in Wisconsin, funded in part by a special federal waiver that allows Medicaid funding to be spent for early autism therapy, without requiring that the families be in poverty to qualify. Each qualifying child can get up to three years of intensive therapy, with ongoing "post-intensive" dollars to follow. The problem is that the funding has not kept pace with the demand, and the waiting list is growing to frustrating proportions.

There's a fair amount of agreement that the gold-standard in inter-personal therapy for autism treatment involves 30+ hours of therapy per week, and the earlier you get started, the better. There are a number of intensive-level therapy programs & approaches out there, and our county offers a choice between two agencies that operate with the Medicaid waiver funding. More about the choices and their content later! What seems to be the commonality across the various philosophies is the many many hours of one-on-one face time, with lots of interactions and lots of documentation. And ideally, the therapist should be the most interesting and engaging thing in the room.

As you can imagine, this sort of intensity isn't cheap. Out-of-pocket, it's up to $60,000 per year, out of reach for most middle-class families unless you double-mortgage your home and drain your retirement funding and fundraise like crazy. We chose not to do so, instead continuing to pursue what therapy we could get for Joy through the Birth-to-Three early childhood program, and more recently through the school district.

I started making calls on the very day Joy got that autism diagnosis, knowing that the wait was long and getting longer. It was nearly two months before we waded through the initial paperwork and got a visit from a county worker to make sure that Joy looked like intensive-therapy material, and then two months more before they got all that paperwork processed and got her officially onto the waiting list, April of 2007. And then the months started clicking by. When she'd been on the list for a YEAR, the county sent someone out to "re-screen" her and make sure that we hadn't had some sort of magical recovery...

In the meantime, we've gotten involved in advocacy, both for Joy's sake and for others coming down the pike onto that awful waiting list. One of the ways that Wisconsin has attempted to rescue the intensive-therapy program without directly ponying up the money it would take to get everyone off the waiting list and into the program, is to require insurance providers to pick up some of the therapy. Currently, insurance providers in Wisconsin are NOT required to cover anything autism-related, so they don't. This year's attempt to make the insurance companies do the right thing went down in flames at the end of the legislative session, when the leadership of the Wisconsin Assembly used a weaselly substitute amendment to keep the autism insurance bill from coming to the floor (where it probably would have had the votes to pass!)

November's elections are very important...

Anyway, we're very happy to have the therapy available, and very happy to have two fully-funded choices. Not everybody has that advantage, and we're well aware of it. We're cranky beyond belief, however, about that waiting list. Talk about wasting public funds, letting the precious optimal months slip by!

We'll continue with the advocacy, of course. But now it's our turn for the therapy, and we're going to do our best to make sure that it's as helpful for Joy as it can possibly be.


Maddy said...

I know about it now, but I didn't know about it when it really counted. It pains me to think how much of an opportunity we missed, how different things might have been. Still no point in moaning about 'maybe's.'

Best wishes

JoyMama said...

Maddy - Mom-NOS has an upbeat post about starting a new therapy in which she challenges the conventional wisdom about the limited window of opportunity. I wonder if both perspectives are right: yes, being young gives certain therapies an extra advantage, perhaps in the same way that it's easier to learn a foreign language when you're little; but, people CAN learn foreign languages later on too (it's more of a challenge, but still).

We're all just out here doin' the best we can...

Tammy and Parker said...

'fully funded choices'

Oh, but what I wouldn't give to hear those words uttered in a sentence for Parker.

But I'm absolutely thrilled for you.