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.
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