A couple of weeks ago, my sister and I attended our older brother’s Person Centered Plan meeting.
For the uninitiated, our brother is autistic and we are his co-guardians. A person centered plan (PCP) is a yearly plan developed in partnership with residential and day programs. Bill’s PCP contains his life…diet, medical information, friends, goals, likes and dislikes, and key family facts and history.
I’ve often said that a PCP is what a life should be…and then we turn to funding to determine what his life will be.
My brother is 42 years old. Our parents spent the first 7 years of his life trying to find out what was behind his symptoms, the next 7 years trying to "cure" him, and then they confronted the reality that he was who he was in a world that wasn’t what it should be.
I don’t know anyone who plans to have a child with autism. A lot has changed since my brother was born, but not that much. Our parents had to pay out of pocket for a private school, therapy, and assessments. Now, unless folks have a religious insurance plan, many states have mandated insurance coverage for autism.
But still…still, very few people properly anticipate the lifelong cost or where funding comes from.
Autistic children grow up into adults with autism.
That’s why I just about fell off my couch when PresidentClinton mentioned families with a loved one with special needs in his recent speech to the DNC.
The man actually connected Medicaid to people with disabilities!
I’m pretty sure thousands if not millions of people were confused because they’ve been conditioned to equate Medicaid recipients with lazy government freeloaders who need tough love and kick in the butt.
I’m no fan of Bill Clinton. That’ll also confuse those who think progressives are a monolith. Nope, I have serious issues with Bubba…but he earned a fluff of the Afro for verbalizing the reality that cuts to social service programs will cause extreme harm to people with disabilities…and an additional fluff for specifically mentioning autism.
That takes me back to my brother’s PCP and what he should have versus what he will have.
Bill’s PCP is also my yearly plan as a co-guardian.
As a sister, I celebrate his achievements and acknowledge where he still have work to do.
As his co-guardian, I note that he may be able to get into a cool training program that would allow him to work. Longtime readers know that my brother used to work…he got up at 4:30am to get dressed for a job that didn’t start until 10am. He loved it, but he had to stop working because a reform in Missouri’s Medicaid qualification that made him vulnerable to losing coverage. And trolls fixing to type some agreement to that should note that my brother worked 2 hours a week at a fast food joint…so he wasn’t bringing in serious cash. What he was doing was participating in his community…meeting cool new people…enjoying the pride of a job well done…and scoring enough cash out of the deal to cover snacks.
He hasn’t worked in years and it took several years to get him into a structured day program so he wasn’t just sitting around getting pissed off at the world.
I could go on and on, but this isn’t god for my blood pressure.
As a sister…oh, how I wish I could jump up and dance with joy that my brother could get job skill training and score a nice job! The sister in me wants that so much it hurts.
But as a co-guardian I confront the reality President Clinton hinted at in his DNC speech…a reality where politicians who point to special needs children when it is serves a political purpose are the same people who would cut funding for programs serving people with special needs.
And let me be clear…
My brother will need food assistance for the rest of his life.
He will need health care coverage for the rest of his life.
He will need housing and supervision for the rest of his life.
And that means he will need the food assistance program funded…not slashed as proposed by Congressman Ryan and approved by a majority of the GOP.
He will need Medicaid and Medicare.
And he will need Social Security, so Todd Akin’s proposal to get rid of that program is a non-starter.
Some will say that the states should handle all of that shit.
And they would be ignoring this nation’s disturbing history of just how the states used to handle that shit.
Others will say that churches will tackle the need.
And they would be ignoring that fact that the states stepped in to fuck shit up after far too many church-based programs proved unfit.
I say that we need to cease bullshitting and get about the business of shoring up the very social programs that make our communities strong.
Another year, another PCP…
…and another reminder that I’ve got guardianship work to do if I ever want to be a sister dancing with joy because my brother has everything he needs.