This past Friday I attended my autistic brother’s Person Centered Plan meeting.
Well, actually this was more of a review of his 2009 goals-based meeting in preparation for his Person Centered Plan meeting. I kind of like this new approach, since it allows for us to give more input prior to completion of the plan. Anyhoo, after three years of asking...wince...they finally produced a spreadsheet detailing my brother’s monthly performance on his goals. We sat in a conference room and digested this information…even though staff was clearly annoyed to have us question the data that was produced so we could question it, which explains why they took three years to produce it.
Most of the key players in my brother’s life attended the meeting – staff from his residential treatment center and a representative from the state office that monitors all things related to his care.
As previously predicted, one of them got overly defensive in response to a valid critique (something along the lines of why the heck can't they explain sharp deviations in Bill's performance when they are the ones who recorded the sharp deviations in his performance) and, rather than explain what should be explainable, proposed that we toss a year’s worth of data and start over.
Another attendee played the role of Corn Flakes pisser and happily predicted several denials of authorization for some shit we really want for Bill.
Still another tried to explain to us that our brother is autistic (really?!?) and that our expectation that staff recording data should be able to explain how they record the data so that we can better understand the data that has been recorded is unreasonable.
As usual, the meeting ended up making me wonder what my brother’s life would be like if he didn’t have demanding sisters who serve as co-guardians and are able to make time to push back against the machine.
That’s not a comforting feeling…not really. It’s the kind of realization that adds a weight to a bitch’s shoulders because I know the answer and it is unacceptable to me.
But I didn’t make a drinking game out of it.
If I had I would have hurt myself!
There were several annoying uses of my brother’s formal name William instead of Bill…and that would have equaled 1 sip vodka cran.
We heard at least two rambling explanations of budget cuts to programs already cut to the bone along with a freakishly overcomplicated explanation of how funds are distributed that so disturbed a bitch that I’m going to have to set up a meeting with the state finance office…and that was supposed to be 2 sips vodka cran.
And naturally, there were a few condescending explanations of autism…surprisingly from a veteran staffer who may or may not have been trying to distract us from her inability to explain how her staff collected the data we were questioning. Umm, that was going to equal 1 big gulp of vodka cran.
A bitch would have been on the floor!
Anyhoo, this week I get to make a series of follow-up phone calls and set up that meeting with finance.
But as a comment to my original post pointed out, the system needs to be worked and challenged by out-of-the-box ideas…
…and I’m just the bitch to do it!