Monday, August 31, 2009

Post Person Centered Plan Meeting Recap…

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.

Sigh.

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.

Blink.

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.

Sigh.

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.

Pause…consider…continue.

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.

Yay.

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!

6 comments:

bev said...

"...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..."

I don't like thinking about that, either. I have a child who receives services from Special School District. Now, my kid "just" has a reading disability and is whatever you want to define as "okay" in other aspects of his schooling. So the meetings are relatively short: "Did you read him the test questions?" "Yes." "Do we see improvement in his reading? "Yes, we all do."

"Well, okay then."

But I had a boss who had a son who was in public schools and was autistic (smile) and he said his SSD meetings could be HOURS long.

I have a friend who has two autistic children and she is at school EVERY. DAY. That's two different schools, mind you. Not hovering, but making sure, if you know what I mean.

And here we are, demanding, supportive, engaged, involved. What if you don't have the time because you're working two jobs? What if you don't have the inclination because you're less than comfy with the schools? It kind of makes me ill to think of it even in our scaled-down version of being demanding and engaged in a school system.

Dusty said...

Another attendee played the role of Corn Flakes pisser and happily predicted several denials of authorization for some shit we really want for Bill. ~ I don't know if your state budget cuts were directed primarily at those who can least afford it, like my state of Cali, but I am thankful that Bill has you folks that love him so dearly that you will question the assholes at every opportunity.

Good luck with the idiots at the finance office. Keep us informed ok? I keep Bill in my nightly prayers ever since he jumped out of the van. So this Cali bitch is on his side too..and trying to work the whole God angle for Bill's benefit. ;)

Dianne said...

I have children with ADHD and concurrent learning disabilities. One is in a self-contained classroom, the other is in a combination of mainstream and special classes.
And yes, these IEP meetings every year are long and arduous--but for every parent like us who attends the meetings and argues and gripes and plants our feet till we get what we need, there are others who put their heads down and meekly allow the schools to dictate to them.

Where would they be if we were not there to advocate for them? And I think you and C-Money rock! (And so does Bill-not-William!)

Taffeta said...

I don't have kids with ADHD or autism. (Actually, I don't have kids.)
That said, I'm new to your forum and I have to say you are quickly becoming my new hero.
What I DO have is a father in the early stages of Alzheimers (apparently) and prostate cancer — and his wife is a very nice, well-meaning, but not very medically savvy yes-person.
Then I remembered I have medical power of attorney and started getting updates from doctors and feel much better about the situation. I've made decisions that aren't popular with Dad's wife, but I'm sure were the right things to do.
I can't state it enough — you gotta be your advocate. In my case I had to let my Dad know that he didn't raise any door mats and to let me get involved. He did, and I say "bring it on."
Your bitchitude is spreading all the way to California. Thanks!!

Anonymous said...

You asked your self--and perhaps your sister--the most important question any of us Caretaker Bitches can ever express:

What if I weren't a bitch? What would my loved one's life be like without me/us up in here bitching?

i have often had the chance to mutter those words to my own self. My mantra is: Picture [this child's] life under a 'good enough' parent...and keep bitching.

annaliesa said...

Hello again SharkFu-

I had a feeling Bill was autistic, as is my little bro.

I wanted to say that I am using your idea about requesting proof or request AND denial of services at my work for now on! I work at a transitional living facility (IE halfway house for homeless people) and some of our residents qualify for services through mental health but get told by the county workers that they won't/didn't qualify. I am sharing your idea with all our residents BEFORE they go to their first meetings with county people and their in-house case managers so they too can bitch.

The only thing I can think of that is scarier to lazy SWs than an angry black bitch is...

an angry "crazy" bitch!

and some of our mental health residents happen to be black too so lord all mighty ya county workers...LOOK OUT!

caveat: I am advocating an unofficial campaign to take back the word 'crazy'. The current label used here in CA is "mental illness" and no, its not ill like Beastie Boys 'ill', it means sick.

Talk about insulting. :(

So like gay and bitch, I advocate those of us who have mental health issues thoroughly take back 'crazy' as a thing of pride!

love,
one crazy bitch in California