13 January 2011

Advocating for my kids, again.

I write letters. And this one is a doozy. I am furious with the Autism Funding Unit. I sent this to my MLA, two MLAs who are sympathetic to the Autism cause, the Minister of Children and Families, and the manager of the unit.
I'm having trouble with the autism funding unit again. It's a complex story:
1) Most importantly, we have a service provider who has never been paid, despite repeated calls on my part and repeated promises on their part, my daughter's service provider has not been paid. Ever. She's been working since mid October. I keep sending the invoices, waiting, and then hearing that they're not in the system. They say to resend it and that they'll process it that day. This has happened twice. She's still not been paid. Again, I have called, gotten a message with a promise of a call back. A call back I don't expect to get, after all, according to her voicemail message, they're working on invoices received in late September, early October. I seriously hope that's an old message, because otherwise, there are hundreds of us in the same boat.
2) My son is non-verbal. He needs a portable, touch screen to use to communicate. the IPods are too small because they don't allow enough on the screen at one time. They're also too light and easy to throw. We tried to have an IPad approved and have been told that they are not covered. Ever. Why not? They cover far more expensive touch screen computers that aren't portable. They cover the aps, which means they know it's a valid item. So why not the computer itself? Should my child only be able to communicate at home? Is that it? Keep your autistic kid to the confines of home? Because that's how it appears.
I'm REALLY angry about not being able to pay my provider. And I'm really tired of being denied coverage for items that my son's behaviour consultant says are necessary items. Honestly, who are you to override the health professional on what is necessary and what isn't? It's reminiscent of the American health care system where some bureaucrat decides that they can't cover some medically necessary item just because it'll cost too much (which doesn't fly because the touch screen computers cost more than IPads). Is that really how you want to be?

Honestly, I've had it up to here them. I mean, my daughter's math tutor has been working almost 3 months on a promise of being paid. I've had phone call after phone call with promise after promise. Callbacks are about as likely as winning $10 on the 649. It happens, but not enough to rely on it. And now they've denied something that he needs to learn to use to communicate. We have an iPod. Too small. He can't differentiate the symbols, and doesn't have the fine motor skills for it. We've tried out an iPad and it would work fine. But of course, we have to be stupid.