13 February 2012

Autism Funding Bureaucracy Strikes Again

Bureaucracy can take any difficult situation and make it so much worse. The Autism Funding Unit seems to excel at this. Here we are, parents of kids with Autism, and they make every step we take to help them as inhumanly difficult as possible. Some examples:

1) Neurofeedback is covered for kids over 6, IF they get a letter of recommendation from a Pediatrician, Behaviour Consultant (BC), Occupational Therapist (OT), Physical Therapist (PT), or Speech Language Pathologist (SLP). Snap has a BC, but none of the others. If the BC decides she doesn't want to write a letter, or doesn't approve of neurofeedback, we're screwed. We set this up MONTHS ago. The unit got around to telling me today that she needs a letter to have it covered. She's supposed to start in two weeks. WTF? I mean, is there a big run on people scamming the system for unnecessary neurofeedback services? OMG! It might go to someone who didn't pay someone else a bunch of money to get the stupid letter! And that's another thing, I'm going to have to pay someone to get the letter. And then they're going to have to bill the unit for it, unless I pay out of pocket for it. Which leads to...

2) Every available service for coverage must be billed directly to the autism funding unit. I cannot pay a provider and be reimbursed. Because the unit is notoriously slow at paying, most providers are very hesitant to agree to this. I am virtually certain this is by design. I talked to one a few weeks ago who absolutely will not work with the unit. She's world-renowned. So only people who can afford it can go to her. Thank you ever so much.

3) The unit will not respond to emails. In fact, they've turned off their read receipts. So, anything I send them by email is guesswork on whether they got it. I even asked if they'd hit reply and send. A blank reply. Just to prove they got it. No way. This is absolutely a ploy to avoid accountability. It doesn't take any time to allow your email program to send read receipts. There's no excuse.

4) It takes a month for them to do anything. At all. If you're lucky. It took a month for them to process my new service provider (that is, get her a billing number so she can bill at all). She's been working since Jan 2 on a promise to be paid eventually. I fail to see why they can't get a billing number same day. As in, "Hi. I'm Snap's Mom. I need a billing number for a new provider for her." "Sure, here it is". But no. It's submit her name, address, phone number, results of latest pap smear, wait for a month, get a number. The number can then be used to send off an invoice for services rendered. Invoices must include dates, times, hours, pay rates, all the names and addresses, etc. Miss one bit of info, you'll find out. In a month. When they reject it. Then, you can fill it out again, and send it off again, and wait another month to finally get a cheque. And billing for services in the future is also not allowed. Which means any small provider, i.e. a single person doing contracts, is screwed. They can't wait for that long! Pop's newest person hasn't been paid since Jan 1 (and we're still in the acceptable zone! i.e. don't bother complaining, we'll get to it when we get to it.) If she didn't have a boyfriend, cheap rent and another job, she'd have quit by now. This is completely unacceptable.

5) I need permission to buy art supplies. Seriously, I have to pay some asshole BC $120/hr to write a letter explaining why I need to buy an easel for $90. This has to be received before I buy the goddamned thing. Again, this is designed to make parents just say "to hell with this, I'll just buy it". About the only thing they cover without a letter is books with "autism" in the title. Seriously. Most OT supplies are not covered. Trampolines, for example, are not covered. Even if the OT says it would be highly beneficial to the child. OT supplies are some of the most expensive things on earth. I get catalogues in the mail and I play a game with Tony called, "How much do you think this costs?" I read him the description and he tells me how much it should cost, and then how much he thinks it actually costs. He's usually under by a LOT. BTW, if any of you know how to sew, get in the business of selling weighted blankets. If I could sew, I could make one for about $60. From the catalogue, it's $450.

6) Anything I do buy, I have to submit the original receipt. A scan will not do. Why? Why is a photocopy not enough? Why doesn't the scan I can send in 3 seconds via email not as good as the original that will take 4 days to get there and a month to process? Because they hope I won't do it. Because they hope it'll get lost in the mail. (And they don't have a physical address either. Only a box. Can't say as I blame them. There are a lot of seriously irate parents out there with these stupid policies.) So, what happens if the $600 iPad I buy breaks and I need a warranty replacement? I have no receipt. Good luck with that. And I can't go buy a new one and bill it, because they get one computer or tablet every 3 years. And what happens when they lose it, like they've lost so many other things I've sent?

7) Any money allotted to your child that you do not spend by year's end goes back to the government. It does not roll over. This is supremely stupid because when the child turns six and is magically cured  under the care of the school system, their funding is cut to $6000/yr, a good chunk of which you can spend on getting letters written to approve your actual treatments.

8) They cover travel for courses. I know, I jumped for joy. YAY! My trip will be covered. Wrong. They only cover travel for courses within BC. What? So if a course will never ever be offered here, you are shit out of luck. Not a dime is covered. Because they want the money to stay in BC. Screw your kids, screw your life, keeping our money in the BC economy is most important (except when the BC govt is shipping jobs to Alberta, that is.)

9) The automatons they hire. Okay, that's not fair. Those people have to work in a very broken system, and probably the only way they can get through the day is to hide their souls away in a cloud of darkness act cold and unfeeling. Today, the woman on the phone told me she was sorry I feel that way, when I told her that it seems like the system is designed to make every single thing more difficult. I raised my voice and said, "You're SORRY I FEEL THAT WAY?! OH THANK YOU FOR THE NON-APOLOGY" and then I hung up on her. Which wasn't my best moment, by any stretch, but it beat what I wanted to say by a million miles. Seriously? How about, "It's clearly difficult. I'm sorry." or  "Yup, that's bureaucracy for ya!" or "I'm so sorry. I wish there was something I could do." But no. She's sorry I feel that way. I'm sorry she has to enforce idiotic policies. I'm sorry our government is more concerned with tomorrow's bottom line than kids. I'm sorry they're too shortsighted to see that denying services now means having to spend millions on adult care.

I'm done. I'm too frustrated. I'm sick with the plague, the creeping crud, the ebola virus, a cold.