Thursday, September 23, 2010

Remembering the person at the center of the plan…


Longtime readers know that this bitch is my older brother’s co-guardian.  My brother Bill is 40 and autistic and each year his team gathers for a series of meetings to revise his Person Centered Plan (PCP).

My brother’s plan is…well, it’s his life captured in print.  The PCP contains everything from his diet to his medical needs to his behavioral goals…and it also contains a lot of shit we’d like for him to have and he's indicated that he would like to have but that we know he won’t get because Missouri has slashed funding for most social service programs.

As an activist, I regularly dive into the world of state funding for programs.

As my brother’s co-guardian, I am constantly stressed the hell out by the limits of his personal budget and how those limits impact his quality of life.

As a sister…well, this is why I wake up at 2 o’clock in the morning thinking about how the hell we’re going to afford two dental cleanings with behavioral assistance this year.

Sigh.

The PCP meeting is today and I need to get myself ready…I need to put my guardian hat on so I don’t lash out when his team of caregivers talks about my brother’s life in clinical terms.

It’s hard…very challenging…emotional as hell even though I don’t want it to be and even though I know that the other folks in the room care about Bill too.

We’re lucky to be in a position to have a say in this shit…to have an active role in these decisions and this plan.

So, I’m getting myself together…calming my spirit…preparing to flip through page after page of a life that means the world to me…page after page of needs and wants, of hopes and goals…page after page of my brother’s life.

We’ll get through it…we always do…by remembering the person at the center of the plan.

But damn it...damn, damn and damn it again...I wish traditional family value voters and politicians valued social programs for adults with autism

Sigh.

8 comments:

D. said...

"...traditional family value voters and politicians..." don't value actual families, which is not a surprise.

Good luck, and may it be possible to do something on the wish list whether the state likes it or not.

Karen King said...

I am the adult younger sibling of a sister with cerebral palsy. Thankfully for me, my parents are still alive and can attend the meetings! So I only have to hear about them when they are over. Also, my parents have been able to put away for a special needs trust that I will oversee when they are gone and I am co-guardian. My mom is a big advocate through The ARC and has testified, etc. Her big advantage is that she used to work for the US Department of Health and Human Services and can work the he'll out of the Medicaid system. My co-guardian, one of my friends from high school works there now and will be serving that role for the same reason.

We also contracted with a company By Their Side, that attends these meetings and helps advocate for particular thongs for my sister, like a job in the community. During the recession, she lost hers and is now in a sheltered workshop. It is hard for people to realize the effects of cutbacks on those who need support.

Good luck today. I know you will be a fierce advocate for you borther.

Alan said...

You might be interested in Nevada Senate candidate Sharron Angle's latest take on autism - it's pretty unbelievable, or not. More here.

pitbullgirl65 said...

Check this little comment out too:
Maternity Leave was also in her crossfire as “I’m not going to have any more babies but I sure get to pay for it on my insurance.”
And *I* may not get cancer, but I sure get to pay for it on MY insurance. $10.00 she's against birth control too.
Nothing, NOTHING is unbelievable with these shitbags, NOTHING>

Sara said...

We just had our meetings for my older brother who is autistic.

I feel ya, and I hope things go well today.

crystalsaurus rex said...

I'm thinking about you sister! Maybe it's because it's been a long ass day in a long ass week at the end of the month near the end of the election cycle, but just reading this has really, really struck a chord with me - and yea, I'm thinking about you!

In other news, I was recently appointed to a city board which reviews and recommends how block grants for non-profits are allocated - hopefully I'll be able to make a difference in the few resources available.

Student of the World said...

My youngest brother has autism and I applaud you advocacy. I get emotional too and I don't understand how some people just haven't got any compassion. I would love to design some type of behavioral science experiment where I can put them in our brothers places and then see how they cut the budgets then.

I have no hope for American. Stupid ass people equate socialism with the Nazi's all the time but then they do shit like this? And my family is working class barely. I have a sister and a mother with Lupus and I myself don't even have Medicaid because I make too much money at my part time job and I'm also a student in college. I don't know what I'm supposed to do when my inevitable nervous breakdown from dealing with all the prejudiced people at work and school,being homeless in between school sessions, and alienation from having worries most of the privileged middle class white kids at my expensive as hell privet college can't even begin to understand and lastly no even being able to see my family like I want to because I go to school so far away in another state and barely scape in enough money to get food every week while working at a tough ass not even worth the shitty money job finally occurs and I just snap on everyone.

nancyimperiale said...

Good luck and I hope it goes well. My mom's a ward of the state in a nursing home so I go through a similar kind of drill. She wants her hair done to look pretty and that alone eats up her $35 a month "personal budget."