I made a major decision this morning. I aint goin'! The plan is, that soon as I finish here, I'm going to call his case manager and tell her. She knows Suzanne and I well enough to realize what we want for him. INDEPENDENCE... the one thing he'll never get in the system.
Last night I was thinking I'd go and give the "team" a piece of my mind. I wrote down what's troubling me about this process, and planned to read it out loud, leaving each team member a copy. The more I thought about it, the less I felt like actually doing it. As I get older, the less I want to fight. That's the reality. My God, I've been fighting this monster for over 1/2 my life! Time to give it, and me a break. Instead, I've decided to talk about it here; sharing what I wrote, with Suzanne's help last night...
"I’m here today to make a statement about my nephew.
For at least 10 years, we’ve been meeting with this team , making suggestions
of what we believe would make his life better. Better meaning some kind of
PROGRESS. Progress towards independence – like an adult, which he is. Suzanne
and I feel that we AND our nephew have been [jerked around] led on a bridge to
nowhere – a bridge to continuous dependence, by all the rest of his “team”.
I have to wonder if there is real sincerity among his *team*
members to see him move forward in his life. Yes, he understands when he’ll
burn himself when the water is too hot. And, of course, he knows how to leave
the house if it’s on fire. He won’t *choke* when he is eating, and his *hygiene*
is appropriate. THIS part of the ISP meeting – I have always HATED it. It’s
demeaning, it’s stereotypical, it has no respect for the individuality of who
HE is, and it subjects HIM to a degrading --- uh, I hate it. Please, Case Manager,
you KNOW us and you KNOW him. Just STOP it. I will NOT answer any more if
he needs *assistance* with his hygiene. If you need to fill out your form for
the authorities, Pllllllllllllllleeze do it on the time you are paid for by the
STATE.
Approximately five years ago, we as his ISP team figured out
a *person-centered-plan*, which was paid for by the state. Everyone was in
agreement – or so they said - that this
plan should happen. What happened? A few years later we were told that he
needs watching 24/7, so that his provider could be paid as much as possible.
He’s still doing the exact same things, in the exact same
places, at the exact same times that he was 5 years ago. I never would have
participated in such a planning process if I had known that it was all for
naught – at least for him.
I will no longer go along with this silliness. How many
times have we heard from Goodwill, he’s not ready to move along to another job
opportunity *in the community*? How many times have we continually heard “not
yet”? It’s been years of pestering for speech and language services using his
own damn money to pay for it. HIS OWN MONEY???
You may surmise that I am angry about how he is dealt
with in these meetings. You are 100% correct. It is a waste of his, and
everyone else’s time. You can go on and finish this meeting, to satisfy a
broken system, but it will be without my “participation”.
