12 June 2013

Adventures in Bureaucracy: Disability Edition

This got long... Sorry!

My darling Snap is on PWD and PSI. Other than actually birthing her, I think getting this approved was my greatest achievement. It was almost as painful.

A little background + acronym explanation

CLBC - Community Living British Columbia - an underfunded government agency that is supposed to provide support for adults with disabilities. They were originally for people with low IQs (below 70? 80?) but recently started including people with Autism and/or Fetal Alcohol Syndrome who have adaptive function  problems.

PSI - Personalized Supports Initiative is a program under CLBC that provides services to adults who have both significant limitations in adaptive functioning and either a diagnosis of Fetal Alcohol Spectrum Disorder (FASD) or Autism Spectrum Disorder (ASD). It is NOT available to people with intellectual disabilities (i.e. low IQ) Starts at 19 year of age.

By "significant limitations" they mean "three standard deviations below the mean on any recognized adaptive functioning test". Recognised adaptive function tests include the Vineland and the SIB-R. These are vastly different. One tests what they can do and one tests what they do. So if Snap CAN brush her teeth (an example only. Not relevant to her.) but does not do it unless she is reminded, nagged, goaded or bribed, she gets full points on the Vineland, but not on the SIB-R.

The test must be administered by a clinical psychologist.

PWD - Persons with Disabilities. i.e. Disability Welfare. - $906/mo - Starts at 18. To qualify for PWD, you must be able to jump through every hoop designed by evil bureaucrats you must be significantly disabled in various areas of living. You must fill out a long application, have your family doctor fill out a section, and have either your family doctor or another professional fill out another section. If you do not have a family doctor, the advice is to find one.

Okay. Sounds easy right? Ask the school district to do some testing. No, they say. We did that 4 years ago. But that's not new enough! Too bad, we got our funding, screw you. They literally did not return my calls. I finally got hold of someone in the last week of school in Grade 11. Of course, that made it too late for that year, and "we don't do testing in Gr. 12". So...?

Just find a psychologist to do the right adaptive function test. Easier said than done! The ones around here all do the Vineland, and that grossly over estimates what Snap can do. Look for one to do the SIB-R. Bingo. Found one. In Nanaimo. Okay, drive up to Nanaimo. Pay the good lady $1500 for the test (she dug through 2200 pages of documentation, provided a 100 page report and spent 4 hours with us). Okay. Good. Next?

Have the social worker fill in the application and send it to CLBC. Make sure it says that she has Autism, but not an intellectual disability... OOPS. The psychologist who did the adaptive function test can't actually say she doesn't have an intellectual disability because she didn't test for that. Have the Social worker call the school district psychologist who did educational testing in Grade 9 and ask her to send a note saying she doesn't have that. But what? That psychologist won't do it? Why not? Good question.

Social worker: It's your own report. I just need a little note saying she doesn't have an IQ below 80.
Psychologist: Why?
Social worker: To send to CLBC so she can get on PSI.
Psychologist: I've never done that before. I'm going to need this request in writing.
Social worker: Why? It's your own report! I'm just asking for a tiny clarification. All the numbers are there. I just need a simple statement.
Psychologist: I'm going to need that request in writing.
Social worker: I don't understand the problem here. I need this now, not in a few weeks. We have YOUR report here. I can fax it to you so you don't have to look it up. Just a simple fax saying, "Snap's IQ is above 80".
Psychologist: I told you. I need that request in writing.
Social worker: I know you told me that. I want to know why.
Psychologist:  Well, I need the request in writing and that's all there is to it. *hangs up*
Social worker: *gapes at me* SHE HUNG UP ON ME. Oh, we shall just see about this!

So... now what? Can't get on PSI without the psychologist who said she had the higher IQ to put it in writing, but she won't. The other psychologist left the school district and the psychologist above flat out said she would not sign off on that work ever, no matter what, because "I didn't do that. It's not my work. I'm not signing off on anything I didn't do!" and when the social worker said, "That's fine, it's all in your report, you can sign off on that!"

So we called the psychologist who did the adaptive function test. She said, "Oh, I wish I could help, but I didn't administer that test, and I can't sign off on the district psychologist's work." Oh. Uh oh. So then I mentioned that I didn't know what we'd do because the only other report's author was gone. She perked up, "OH! She's not available! Then yes, I can sign off on that. When the author isn't around to clarify, I am allowed to give my best guess about it, and in this case, all the numbers are so clear, it's not even guessing. She's obviously not a low-IQ case!" PHEW!

Okay, so she faxed that right over, no charge, and off went the application to CLBC. Approved! Woo! Next up, PWD.

For PWD, first you have to fill out a long application online. There is no way to do this with a ministry employee. There is no way to do this on the phone. There is no way to do this on paper. So we filled out the long application, and then waited. And waited. Finally, we got a call. During the call, I basically had to reiterate everything from the application. Then I was given an appointment date and address. Except the address didn't have the suite number on it, and the complex was huge. So I called to find out the address. I was told RUDELY that I had no right to call on behalf of my daughter, and they weren't telling me anything. I told them she is still a minor (she was then) and they grilled me about why she was applying, what her diagnosis was, and why she couldn't talk herself. For an ADDRESS! Finally, they gave me the address and confirmed the appointment time.

So, we showed up at the appointment with all the things on the list (ID, etc.) First thing, the sign says to take a number and wait. So we did. Then a nice lady sitting beside us overheard us say we had an appointment and told us we didn't need a number if we had an appointment. Good thing she was there! So we went to the counter and a large security guard asked us what we needed. We told him we had an appointment and he let us up to the window. We told the receptionist and she told us to sit back down, they'd call us when they were ready. Oooookaaaaay. So we sat. We sat with the mentally ill, the addicted, the criminal element who collect welfare while they sell drugs, the homeless. The down and out, basically. Now, if you know me, you know I have a LOT of empathy for these people. I'm also not above sitting with them, sharing my lunch, whatever. But it's a recipe for disaster. Get someone with autism in there with the noise, the smell (oh your multiple fucking gods, the smell), the harsh lights, the over-crowded waiting room, and just see if there isn't a problem. Snap did fantastically. And she needed several hours alone afterward to unwind from it all. Might be an idea to have a few streams, some quiet rooms, etc.

Finally, they called us. We went and sat with a man who I have discovered may be the single best intake worker ever. I've shared stories. He was kind, funny, gentle, and he took his time. Now, he forgot to get a consent (which caused a bit of trouble later), but other than that, he got the ball rolling. He asked us all the idiotic questions, like "Do you own any foreign property?" "Do you own any watercraft?" Um? No... After "Do you have any assets", the answers are all obviously NO. Duh. But he asked, and we laughingly answered. Finally, he sent us away with our forms. These forms are incredible. They basically re-ask everything that a) we'd already answered; b) is already answered by all the medical and psychological reports we had to bring with us to the appointment. The forms had to be filled out at length by the family doctor and another professional (or the doctor again). If you have no GP, as many many many do not, you may not apply. Period. The advice is "find one". Check the College of Physicians website, there are NO doctors in Victoria taking new patients. And honestly, good luck getting a new doctor to fill all that out for you, because they'll think you're scamming them, and not want to put their ass on the line for a patient they don't know well enough. We do have a family doctor, sort of... (longer story) and she was horrible about filling it out. I answered all the questions on a separate piece of paper, and put page number references to the myriad documents included with it. She checked to make sure I had the stuff right, and more or less copied my answers. It took her 6 weeks, and cost Snap her first check, which fortunately she didn't need because she was still living here. Then we sent the form to the same psychologist who bailed us out last time, and she did the other part. There was no way for them to do it at the same time. One form.

After the form was done and sent in, we waited. Finally, we got a call that she was approved. But they needed her SSN, because the intake guy hadn't included it. Also, there was no consent on file, so they couldn't talk to me about all this. Eesh. So we had to go down to the office. This time, the downtown office.

The downtown office is flat-out terrifying, mostly because the security guard looked like he was scared shitless. But we managed to get let upstairs to the community living worker after surviving the guard's suspicious looks. So, as I was looking at the consent, I noticed that our address was wrong. Off by one. Something like 737 instead of 747. Well shit. Now they wanted us to prove it, prove who we were, etc. Managed that, and she changed it. She gave me a phone number for the bus pass program, issued the cheque and then said the next one would be direct deposited. Hallelujah!

Except not. The date for the deposit came and went. So I called and left messages for 5 days. Finally someone called. I told her what happened and she looked it up and said, "She hasn't been approved yet." I said "What?! She got her first cheque! What do you mean she's not approved?!" She did some looking and found that oh yes, she HAD been approved, but no one told the computer to start issuing cheques yet. So she fixed it, confirmed my address with me and told me she would put the cheque in the mail.

While waiting, I called the number the worker gave me for the bus pass. I spent 45 minutes on hold to find out she had given me the wrong number. The woman on the line sent the bus pass application anyway, but very very condescendingly told me that next time I would have to phone the right number.

And then the cheque arrived. At my neighbour's house. They sent it to the wrong address. The bus pass application also apparently went there, but he didn't think to bring it. Only when he saw that it was a cheque. In fact, the guy didn't even know us, and wouldn't have known to bring it at all, but Pop's magazine had the same problem, so one day when I saw him outside, I asked him if he'd drop off any magazines that went there by mistake.

So... More phone calls today to change it. Another hour on hold. Apparently they had a home address, the one the person confirmed with me, and a mailing address, which was wrong. Should be fixed now. So I asked if she could send a bus pass application again. Yes, she said, but did I know I could apply online now? No, I did not know that!

So, off to the web! Oh shit. It only works in IE 8 or better. I use Chrome. Find IE. Try again. Oh shit. It needs the newest Adobe Reader. Install that and... Nada. It doesn't fucking work. So, I saved the link, opened it manually and it worked. But, as I found out when I had to do something with the boys, it must be submitted within a certain amount of time. So I had to go back, re-download it and try again. Success!

And now we wait. For the next cheque. And for the bus pass.

Now tell me this, what if Snap didn't have me? What if the psychologist hadn't signed off on the work of her colleague? What if I hadn't had the $1500 to pay for the assessment? What if I hadn't known about the failings of the Vineland? What if she had no one with the patience to wait on hold for hours? What if she had needed that June cheque for rent? For food?

She would have fallen through the cracks, that's what. And I wonder how many people there are like her who have.