My current understand of the way things work, in PA and in Allegheny County, at least, is this:
1. A psychologist gives your child an autism spectrum diagnosis and makes a recommendation for certain services to help your family.
2. You take this recommendation to an agency who provides “wrap-around” services, meaning people come into your house and help you out in the way the psychologist suggested.
3. The folks who come to your house make some more notes and expand upon the psychologist’s recommendation and then send all of this information to…I don’t even know who these people are, but another level of agency who has to APPROVE the services in order for you to be allowed to have them.
Also? You have to repeat all of this every 6 months, so more evaluating and making plans and getting approvals and gah!
This June we had our 6-month evaluation with Mikey, who spent the whole meeting lying on the carpet licking the shoes of the evaluator. To be fair, they were very shiny and very high-heeled. I felt drawn to them, too. Unlike my first evaluation, this one brought no surprises or enormous emotional upheaval.
Results: yep. Still on the autism spectrum.
The psychologist this time decided to try another approach with Mikey’s services, writing a recommendation for a Behavioral Services Coordinator (BSC) to come to our house in addition to a Mobile Therapist (MT) to work with Mikey on his intense emotional responses to things. Basically, to help him stop freaking the fuck out so hard over something like his friend not wanting to make believe she is a hay truck.
We dutifully sent this recommendation off to whichever the hell agency, and they denied our services claim.
I take issue with this denial for several reasons. For starters, they didn’t even bother to phone in or show up to the meeting where they are supposed to ask questions about the services. They accepted the recommendation via email.
Then, once they’d read it, they didn’t ask for more information. They just denied our services and sent me a letter, missing page 2, informing me we’d been denied.
When I called to ask about page 2, the agency told me, “Oh, that’s just the page with instructions to file a grievance if you’re dissatisfied.”
So, I obtained my instructions and began the process of attending a grievance hearing to argue for Mikey’s services. Even the phone call asking for the hearing felt overwhelming to me. It went like this:
Them: And why are you filing a grievance?
Me: You denied my son’s services.
Them: Yes, but why are you filing a grievance about this?
Me: Because my psychologist, whom I trust and work with regularly, feels that BSC and MT are appropriate for my son.
They gave me a date for a phone hearing and told me I could invite anyone I wished to sit in on the call. On their end, they’d have the woman who denied our request, her supervisor, and a third-party psychologist.
I spent the whole week preparing for this awful hearing. I had to gather dates and examples of behavior. I had to make a bulleted list of things I’d say to “prove” that my son was a mess and needed this help.
Other parents suggested I not give Mikey quiet time that day and have him run around in the background during the call, making a stink. Easy enough!
To add to my astronomical stress levels for this hearing, the sitter I hired to watch Alex during the call *texted* me that she wouldn’t be coming…32 minutes before the hearing.
Thankfully, I have a friend with a flexible work schedule who was able to come over at a moment’s notice.
I called in to the conference call and our BSC came to the house to also speak during the hearing. I spent an hour discussing all the ways my child is a damned disaster, and it was heartbreaking. It sucked. I felt like a shit-bag.
And he’d been having a pretty awesome week, plus it was the day after his birthday to boot. But I couldn’t say a single word about how he now helps his brother eat breakfast or puts away his clean laundry. How he wakes up at the crack-o sunrise and runs into my bedroom to yell, “LOOK AT THE TREES! THEY ARE GOLDEN!!!”
No, I could only list the ways he lashes out physically and verbally at others, the way a broken stick ruins his whole afternoon and leaves his body stiff and spasmodic. How at the drop of a pin, he shifts instantly from giggling to red-zone meltdown.
Afterward, I had nothing left in me and so I laid down on the floor and cried a little bit.
Two days later, we learned the grievance was denied. Mikey’s services are still denied. Their recommendation is to resubmit the paperwork asking only for a BSS and a Therapeutic Support Staff (TSS).
So, I’ve been spending the week since this denial trying to make a new plan. I’ll let you know when it starts to come into shape.