What Changes and Stays Exactly the Same?

~ Clearly Muddled Blog ~

The thing about autism is that it changes the way it looks, and at the same time requires similitude. So, I work to create the routine my autistic son requires, and because his sensory sensitivity directs how life goes, I am always needing to adjust on the fly.  He’s a moving target, and I don’t always have the best aim.  That right there…is when my head explodes!

I remember when Josh was in middle school we had a meeting with the insurance company that paid for behavioral healthcare. He had a full-time TSS (Therapeutic Staff Support), and they would meet Josh as soon as he got off the school bus, and was with him until he got back on the bus at the end of the school day. In the summer months the TSS would do things in the community with Josh, so he could learn how to communicate with people in a variety of situations. This meeting was scheduled because the insurance company wanted to cut the hours of the TSS and the rest of us thought that wasn’t a good idea. That’s fair.

A bunch of us showed up: The TSS, Mobile Therapist, Behavioral Therapist, Dave (my super hero husband), and Josh and I. I came with letters in hand from the School Nurse, Counselor, Teachers, and his Psychiatrist.  The letters spelled out the necessity and benefit of the hours, and why they should be maintained at full time status.  We were ready. I was feeling like Rocky after he ran up those stairs!

Then, something I didn’t see coming happened. The panel representing the insurance company asked me things I had no way of answering. Like how many times a day does Josh exhibit a particular behavior, how often does he repeat something else, how frequently another, how much prompting for certain situations, how long does this or that take. I was blind-sided.  Was I supposed to be keeping a chart? I hate charts! My approach until that point had been to help Josh when needed, encourage independence when appropriate, and not go to jail in the meantime. A VERY solid plan, in my opinion.

The TSS hours got cut. Not because the panel of decision makers were being jerks, but because their job, even to this day is to ‘ensure that services are medically necessary and are being delivered at the appropriate intensity for a prescribed length of time’.  Basically, we didn’t provide documentation showing the need for the level of care to continue. We talked about his behaviors, but didn’t quantify them.

Stupid, math!

After the meeting I got a call from the behavioral health administrator…from the insurance company. She asked if I would consider becoming a consumer representative for them and sit on the panel for meetings like the one we just had. She said I would have equal say-so, along with a psychiatrist, and a quality control analyst in determining the level of care provided for other kiddos on the spectrum.  I would be their voice. Hell yes! It was one of those times in life when the silver lining was instantly visible.

When life gives you lemons, buy shots for everyone…because we’re all in this together.

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Listen to the Podcast: Josh Has Autism #083: Up Down Stop and Go | https://sonyaking.com/josh-has-autism-083-up-down-stop-and-go