25 July 2010

Autism Funding in BC, part 2

Last post, I talked about Autism Funding in BC for children under six. The gist: Underfunded, complicated, and designed to make you pay instead of them.

So, now, the 6 and up program:

First off, when you're six, you're magically better by about 80% because that's how much your funding goes down. Instead of 22,000/year, you get $6000/year. The schools are supposed to make up the difference. HA! Such shit. Get this, they are allowed to take your child's funding, and put it in their general fund, providing your child only as much service as they deem fit. Take, for example, Snap. Her accommodations at school require her to have a quiet room for testing, and the ability to leave a noisy classroom. That's it. For this, the school gets $16,000. Think of an equivalent. I dare ya.

Now, I could happily spend a ton of that getting her social group counselling, music therapy, riding therapy, tutoring, someone to help her organize herself for school and life. But no, I get $6000 per year to spend on her therapies. *All* of which should be fully covered, and would be if they actually treated Autism as a health care issue. HAHAHAHA! Right, because physiotherapy, chiropractors, naturopaths and podiatrists are covered too. HA! Anyway. You get my point.

Now, I grant you, Snap is high functioning, and it's great that some of her cash can fund kids who are lower functioning (I'm a socialist at heart, you know!) However, that's not happening! There are kids who cannot speak who are denied speech therapy, because they don't know what to do with them! It's insane. The speech paths are more or less 'articulation teachers'. So if Kid X has a lisp, great, they can help. If Kid Y has a harelip, sure, they're all over it. But if Kid A (for Autism! I'm so clever...) has no speech whatsoever? Or like Crackle, has about 20 barely decipherable words, good luck with that.The speech paths are not interested. Go hire your own. At $100/hr.

And what about the assistants? Crackle is going to require a full time assistant. Not that long ago, a parent had to sue the Abbotsford school board to get them to give them an assistant who was more than functionally in control of the child, but actually was there to teach them. See: http://www.autismsocietycanada.ca/pdf_word/Judge%20Koenigsberg_re_HewkovBC_11_03_06.pdf Do I expect to get an assistant who can do a damn thing for us? Nope. I'm going to have to fight, I'm sure.

Like the Under 6 program, any therapy we do get for Snap, the therapist or counsellor has to bill the government directly. This is a big hoop, because they often don't get paid in a timely manner. This in turn means many of them won't work for Autism clients unless they're being paid out of pocket. We cannot be reimbursed for out of pocket payments. So this means some hard searching to get people who will go through the hassle of fighting the trolls at the Autism Funding Unit.

The nice thing about the over 6 program is that there is coverage for family counselling and that sort of thing. I don't know why they don't think people with kids under 6 with autism need counselling, but once they hit 6 they do. It's kind of screwy, to say the least.

Neither program covers biomedical treatments. I suspect this is because they don't want to admit this is a health problem. If it is a health problem, they're going to be required under federal law to fund treatment. However, as a Whatever They're Calling It problem, they can fund it under the Ministry of Children and Families, and make cuts whenever and however they see fit. It's disgusting. Biomedical treatment is crucial, to recovery. And I don't mean cure so don't start Jenny McCarthy shrieking at me. She seriously needs to shut up. She's right about a few things, and seriously fucking wrong about others. It's annoying. Anyway, I digress. Biomedical treatments for autism include, but aren't limited to, vitamin therapy, natural antibiotic and anti-viral therapies, and chelation for metals and other industrial pollutants. These have done far far more for Crackle (and Snap, for that matter) than any other treatment to date. And they've cost us thousands of dollars. Well worth it, given the results - Snap's unbelievably better, to the point where, if not for her history, she'd never receive an autism diagnosis today. Crackle, well, he's improved to the point where we don't qualify for respite funding any more. He's still got a zillion issues, but he's able to play with toys now. And that is a marked improvement.

It is so unbelievably shortsighted to underfund autism treatment. Honestly, without biomed, I don't see most ASD kids as having a chance at living a life without government funding. And lots of parents can't pay for that. To underfund ABA treatment, and then have the kid grow up to need a group home? Stupid. To underfund the school system and have the kid grow up to need full time care? Supremely stupid.

Yes, and when they're 18, they're apparently cured. No funding at all. Welcome to the group home unless your parents can afford to buy your help for you. Not impressed.

20 July 2010

Autism Funding in BC

Sometimes I think I should have called Crackle and Pop "Crash" and "Smash". There are days when I feel like I'm hanging on to sanity for dear life and they're stomping on my fingers.

As I've mentioned, Crackle has Autism. He's 4 years old and he's non-verbal. He's quite high functioning in some other respects though. He's clever. Way too clever. For example, if Mom won't open the back door to let him out into the yard, wait until she's in the bathroom and then climb out the window. Childproof locks have nothing on him for the most part. And he gets bored easily, which is always trouble. Snap has Autism too, but she's much higher functioning. She was diagnosed late (at 14). Before that, we knew something was up, but couldn't get anyone in healthcare to listen to us until her little brother was diagnosed.

Anyway, enough of the personal stuff, let me tell you about Autism Funding in BC: It's a fucking nightmare.

There is no government-run Autism program for children. Rather, the government gives us each $22,000/year to buy our own treatment program for children under 6. Imagine if the government gave you $22,000 and said, "Go buy your own healthcare. We won't regulate it except for that the person managing it must be on our list. And oh yeah, we grandfathered a bunch of unqualified ones onto the list. Good luck with that. And please kiss our asses for our generosity!"

With our 22 grand, we are to buy a Behaviour Consultant, a Speech Language Pathologist, and an Occupational Therapist. Those people almost invariably charge $100/hr. The Behaviour Consultant makes the plan that the BIs (Behaviour interventionists) follow. BIs can be anyone over the age of 19. There are no qualifications necessary. I shit you not. The plan includes all sorts of programs that help the child learn things that neurotypical kids learn on their own. Like how to play with toys, how to make eye contact, how to talk. Rather important things in the grand scheme of things!

Now here's the kicker. I don't have access to that money. The people I hire have to bill the government, who pays them out of my Autism account. When they get around to it. This is new. Before last October, when they shut down the government run program, we were also allowed to have access to our accounts, and pay our employees ourselves. When they changed it, they promised that the turn around time would be less than 4 weeks. HAH! Lying liars. Incompetent lying liars. A therapist I hired for Snap was paid after 4 months of harassing them. It's gotten so that a lot of the SLPs won't work with Autism clients because they know they'll have to deal with runaround. And no, I am not allowed to pay them myself and have the money reimbursed to me.

When I buy supplies related to his treatment, I have to pay upfront and have them pay me back. So they recommend preapproval on everything. Which takes WEEKS. So if I want to buy Crackle photo flash cards, which inexplicably cost over $100, I have to send in an approval form, wait for them to process it and send it back, buy the stupid cards out of pocket, send them the receipt and wait for them to process it. It can take MONTHS. For flashcards! They do this so that we'll just buy out of pocket and not bother. Assholes. Oh, and there are *tons* of valid things they won't cover. Like trampolines. Trampolines are recommended by OTs for helping people with autism gain core strength. Not covered. Period.

In the under 6 program, we don't qualify for family counselling. No riding therapy. No swimming therapy. No music therapy. Nothing but the core stuff. Not that we could afford it anyway. $22,000 doesn't cover even close to all the ABA treatment needed. Think about it. ABA therapy should be 5 days a week for at least 4 hours a day. That's 20 hours per week at about $20/hr to a BI. $400/week x 52 = 20,800. The Consultant is required, and they charge $100/hr (I've seen as low as $80, as much as $140, but $100 is pretty standard). Call that $1200/year, and you're done. No supplies, no Speech Pathologist.

So that's how the under 6 program works. I'll do the 6-17 program in another post.

I find it mindboggling that they get away with this. Autism is a health issue. But it's supervised by the incompetent boobery of Mary Polak in the Ministry of Children and Families. The shortsightedness of this program is appalling. If children with Autism get intervention (both ABA and biomedical - a whole nother can of worms) early, they will save the government millions, each. Literally. Because a kid with autism grows up to be an adult with autism. The lower functioning those people are, the more they cost the government in services. Cough up early and often, and they'll save millions, per person with Autism, on group homes, respite care, etc. Not to mention, having productive members of society.

16 July 2010

A rare personal post

I'm hurt, pissed off, and just seriously sad. I lost my job a couple of weeks ago.
Here's what happened: Crackle's autism interventionist quit, meaning that we had to get a new one. We switched to a new company at the same time because we were disappointed with that one, though we did like the front line people. Anyway, the job was getting hard to manage with the kids, and so I asked for a leave of absence so that I could properly care for my disabled kid.

I got turned down. No. In no uncertain terms, no. It's not fair apparently, for them to have to hold the job until I can come back. Never mind that they had another secretary who was willing to take my hours until then and give them back when I came back. It was also "too long". So what's a reasonable time, I asked. "We didn't discuss that." IOW, fuck off, Luna. So, I quit. Not that I had any options.

Remember where I worked? A church. A church I spent a lot of time with. These were my friends. These people came to my baby shower. They insist they'll miss me. They offered a letter of reference.

It's not like I'd ever heard a complaint about my performance. I worked plenty of unpaid overtime. Hell, I even drove over to the church on Christmas Day to let an AA group in. I did mega hours on the website for free.

I am so hurt. I cannot understand why they did this. I cannot fathom what was going through their minds. It's two weeks later, and I'm still randomly tearing up.

15 July 2010

Oh Pamela... So Pam Anderson, spokesperson for PETA, is using her body to draw attention to her cause - i.e. ethical treatment of animals. And the city of Montreal isn't giving them a permit for their billboard.

I'm very ambivalent about this one.

On one hand, it's her body, she's used it for worse, she should be able to use it as she sees fit. On the other hand, the city of Montreal shouldn't be required to put up a billboard they find offensive and sexist.

Is it sexist? Absolutely. And so is a lot of other shit, I'm sure Montreal has no problems with. So is it a problem simply because the meat industry would shit a cow? What if she was selling lingerie? No problem then, I bet.

Censorship? Yeah, sure. But it's not like someone's coming to arrest her for her actions either. She's free to try elsewhere. OTOH, why should she have to?

In short, I dunno. I haven't made up my mind. Give me your thoughts.

12 July 2010

Luna outsmarts the machine!

Wii Fit pisses me off. I mean, it REALLY pisses me off. I bought the thing so I could exercise in my living room while the kids are otherwise occupied. And I thought it'd be fun. Sure, fun. If you like it saying "That's overweight!" and then groaning at you. Really? I didn't know the extra roll around the middle was ...well, extra? That's why I bought the fucking game.

Anyway, it's fat shaming when it weighs me is the least of my issues with it. The next thing is a "fitness goal" that isn't a fitness goal, but a weight goal. Which is mandatory. Now, I'll grant you, you can say you want to stay the same, but you still have to set it. Even if you're 4 years old. In order for Crackle to play, he has to do a body test, and set a weight goal. Ludicrous.

Speaking of shaming, if I get on the stupid thing in the afternoon, it warns me not to eat afternoon snacks! Unfuckingreal. 

My next issue with it is BMI. BMI is bullshit. Pure and simple. It tells my husband that he's normal, but then warns him it's pushing overweight. Bullshit squared. My husband has very very little body fat. He's muscular though, and that makes his BMI rather high. Not proof enough for you? Check out this illustration of BMI. Utter crap. Also, it tells my daughter Snap that she's just perfect. She's quite underweight. She wears size 00. And no, she's not got an eating disorder. She's got C.difficile.

So, because I don't feel like being shamed much, I figured out what to do. I went in and changed my profile height. Added about a foot to it. Haha. Stupid Wii. Now it pleasantly tells me how normal I am. Though it still thinks I should lose weight to make my BMI a perfect 22. Normal is apparently not enough.

I really have had it with the fat shaming and fat hatred. It's disgusting. I made the mistake of watching the Wanda Sykes show the other night, and the fat shaming on there was epic. Oh fat people, how awful they are, lazy and stupid, needing a scale in front of a candy machine so that fat people can't buy candy, blah blah blah.

Here's a little piece of WTF: take a look at how sexual harrassers are portrayed. Almost invariably, they're fat men. Because fat can't be sexy. And a fat woman who likes sex?! GAH! Run for the hills. Please. Queen Latifah? That's one sexy woman! I almost cried when I saw her on a Jenny Craig ad. Fortunately, she figured out how much that food sucks and quit.

You know what? Fuck off. Fat people, we know we're fat (and hell, I'm just barely in that range at size 16, and I get it). We don't need a scale to remind us of this. We don't need the media telling us how awful we are. We don't need doctors blaming all our illness on Teh FAT ("Strep throat? Lose weight, lady! You'll get sick less!"). And we sure as shit don't need our fitness game making us feel like shit every time we step on it.

02 July 2010

Canada Day

*note* A day late and a dollar short. Snap had a bad day. And I spent many hours trying to help a technologically clueless friend unlock her iPhone - she bought an unlocked one, and then upgraded the firmware before even making a call, rendering it locked again. Oops. So, without further excuse... yesterday's post:

Well, Happy Canada Day, I guess. Not that I'm celebrating. To celebrate would be like celebrating that we're not the biggest douches on the pharmacy shelf. Still douche, but not the worst. Hardly cause for celebration.

I'm ashamed of Canada this week. For our G20 maternal health care initiative that doesn't protect the lives of women who choose to abort. For the treatment of protesters in Toronto. For the Black Bloc bullshit, and the assholes all over the place who keep defending this crap. For a government that still won't fund schools in the north, but spends money on well, just about everything else, including that billion dollar boondoggle in Toronto. A billion fucking dollars. It's sickening. We have children in poverty, not that we'll know about that in a few years when the census is goneNo more quality stats on poverty, ethnicity, birth rates. We have adults made to feel like criminals for asking for government help when they're too sick to work. We have media who just bald-faced lie in their articles. We have governments that ignore the wishes of the people and just do whatever the fuck they please.

So screw pride. I'm plain old ashamed to be Canadian today.