Part Forty-Eight: Waving Good-bye to the Waiver
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So, we blew it. We finally had our intake evaluation meeting to get Mr. Happy on the waiting list for the waiting list for a Medicaid waiver and – we blew it. Yes, we failed to get in line for the line.
It wasn’t my fault, or my son’s fault, or the fault of the two really nice women who conducted the intake meeting.
It was the test’s fault.
The test is racially, genderly, politically – quick, what’s another “ly”? – biased! It’s prejudiced! The system is rigged against white, autistic males who are very, very tall. And skinny! (Can’t forget skinny.) And funny. My Lord, how that test hates the funny!
I hope it’s clear that I’m kidding.
You have to pass (fail?) three out of eight sections and the sections have questions like — and I’m making this up now because who can recall the actual test questions? —
Can you blow your nose on your own?
Mr. Happy: Yes, but I don’t because I like making my mother crazy.
Do you need help getting out of bed?
Mr. Happy: Only when there’s a cat on my chest.
Do you use any sort of adaptive technology?
Mr. Happy: Does that include my PlayStation?
Can you drive?
Mr. Happy: You just made a copy of my license.
Can you manage your finances?
Me: Go ahead, honey. Tell them about your multi million dollar Visa bill!
Mr. Happy: Ok, ya got me there.
Do you need help going to the grocery store?
Mr. Happy: I work in a grocery store.
In the end, he passed/failed just one of the eight sections. The one about finances and making decisions about the future. The test is definitely rigged because I totally thought his responses in that area should’ve counted at least twice or three times.
Ha.
So, he didn’t qualify for a Medicaid waiver. And the reason he didn’t qualify is because he doesn’t qualify.
When I think about the moms I know whose kids have one of these waivers, I’d be on my way to hell in a handbasket (without chocolate or wine, so you know it’s bad) if I thought for a minute of comparing their child’s needs with Mr. Happy’s.
I have friends whose children can only work with a job coach directing them. Friends whose children will never work. Friends whose children cannot shower on their own and who absolutely need help getting out of bed. I have friends whose kids can only dream of driving a car.
If I were to put Mr. Happy next to one of my friends’ children, my son would be the “regular” one and I know, we all know, he ain’t regular. He’s got that special sauce that qualifies him for psychotherapy and meds that stave off delusions and lots of other things – good things, too – but not a waiver.
Could I have encouraged him, urged him, bribed him with mountains of McDonald’s cheeseburgers to answer the questions far, far less truthfully? Yes. But I didn’t – although I confess I did think about it for a quick moment, actually shooting off an email early in the morning to a dear friend who “knows the system” and asking, “Should Mr. Happy be disabled or REALLY disabled today?”
Advice is what we ask for when we already know the answer.
No matter her reply, which I didn’t get until much later, I couldn't do it. As Rob said when I told him, “Well, at least you can look at yourself in the mirror.”
Yes, I can look at myself in the mirror and hope to see a money tree sprouting from the top of my head. Though it’s more likely I’ll discover an extra hand, waving good-bye to that waiver.
Thank you for taking this long, strange trip with me. I appreciate you and your many comments and emails. If you’d like to read parts 1-47, you can do so here.