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Autism Funding in BC - it still sucks

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Autism treatment isn’t covered in Canada. Not even in BC where the government gives us a bit of money to buy treatment. It’s a travesty. I’ve written before, and I’m doing it again, because GODDAMMIT I’m mad.

I wrote these a year and a bit ago: The Under 6 program: (This is an earlier draft of the link above) So I should be grateful I get $22,000 at all, right? Really? Would you be happy if the government funded half of what’s considered a full treatment for your sick kid? No. You’d be goddamn good and mad. Your kid had a stroke. Here’s funding for half his therapy. Go find a provider yourself. Here’s a list of doctors we approved, and don’t worry that some of them don’t actually have their credentials and were grandfathered on to the list. And oh yeah, we’re confident enough in all them that there’s no accountability whatsoever. And also, tell him to get better soon, because your funding runs out in a couple of years.

Ganz did a study on the cost to society of taking care of an autistic person over the course of his or her life. It’s over 3 million dollars, most of that being adult care. If ABA can take an average of 30% of those people can help them to function at normal levels, and 80-90% of them significantly improve so that they need say half of the care funding, that’s a metric shitload of money that we could save in fully funding ABA treatment.

Well, now Crackle is 5 and a half. He’s almost to the Over 6 program. Which BLOWS. Because he’s not improving and has, in fact, regressed on this half-assed ABA. The school board will get a chunk of money to help him, but they don’t do ABA. They don’t do treatment at all. And why should they? They’re a school, not a hospital. They should be educating him. But they can’t. Because they are so underfunded it’s ridiculous.

I kept Crackle out of school this year and enrolled him in a Distance Learning school that lets me homeschool him. I have the school and the ABA provider work out an IEP and the ABA people administer the curriculum. This is fine until the end of the school year in June. After that, the money drops from $22,000 to $6000, and the school receives $18,500 (I think), but only provide me with access to $12,000 of it. They take the rest for administration. That is standard across all the distance learning schools. So, in effect, I’ll lose $4000 from a program that was already underfunded by about $25,000.

So next year, what the hell do I do? I can’t really send him to school, because the school board made it quite clear they would not even keep him safe, never mind actually educate him. They told me they would not be able to give him a full time assistant, asked me questions like, “How long can he be left unattended?” (answer: 4 seconds, max.) and gave me a highly skeptical look at my reply. Then when they observed him with his Behaviour Interventionist (BI) they asked her the same thing. Fortunately, she said the same thing. They didn’t believe her either and kept pressing her for ideas for what they could give him to do that would allow him to be left unattended. Um… He’d leave. He’d go play in the woods. Or find a pond to splash in. And that was the school district here. The neighbouring one told me to go to SIDES (i.e. homeschool him with the government funded program) because there was no way they’d be able to accommodate him.

Also, is the issue of gluten. Crackle is so highly sensitive to it that if he so much as touches it, he’s sick. Also, he mouths everything and eats non-food (and I don’t mean McDonalds! I mean paper, dirt, rocks, fabric). So I tried to tell them he needs to stay in a food free environment. Hell no. “They eat in the classroom”. Well, maybe find a lunchroom? Or send them to the gym? Or double up in another room? Nope. They said they could clean it. Ha. No way. No bloody way. Crumbs are everywhere. Yes, they clean for the peanut allergy kids. But they also advise people not to send peanut stuff unless absolutely necessary, and then they segregate those kids. Imagine if every kid in the class was eating peanut butter, shelling peanuts, and had food made with peanut oil. You gonna clean that up well enough for a peanut allergy kid to be safe? Hell no. This is no different.

I’ve given up everything for my kids. A career, a life outside my home, a house without shared walls, friends, family, everything. And I’d do it again in a heartbeat. But GODDAMN the bastards in government for making me do it. Goddamn them for telling me my kid isn’t worth the money to treat. Goddamn them for doing this to all the other kids with Autism out there. Goddamn James Moore for calling us a special interest group that isn’t deserving of medicare.

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This page contains a single entry by published on November 3, 2011 12:19 PM.

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