Wednesday, April 1, 2015

Uncharted Waters

About a year ago was the end of the 2014 legislative session.  I wrote a blog post and never published it.  It seemed a little grim for a blog about the "lighter side of the autism spectrum".  I recently looked at it and thought "hmm, still there...maybe more so now."  Today is the start of Autism Awareness Month in Utah (thank you Governor Herbert!).  I'm just going to set this free and get it out of my system.

Here's most of the original post:
The boys

Tonight, I'm waiting for SB57 to come to a vote.  It's an unsettling time.  Years of effort have gone into this and thousands of peoples' futures depend on the outcome.

We don't know what tomorrow will bring.  We don't know if this bill will pass.  We're not lobbyists...we're parents, stomping around in the political arena and hoping for the best for our kids.  For us, it's uncharted waters, but that's nothing new for those of us outside the bell curve.

I'm pretty sure roughly what the future holds in store for my older son.  His name is William, by the way.  Ben calls him "Bubba" and that's what I've called him here up to now, but William is his given name.

Whatever fate holds for him, William will be okay.  He'll go to college, or not (and face the wrath of his parents and grandparents).  He'll meet someone, or not.  He'll "settle down", or not.  It's all up to him.

Ben, on the other hand, doesn't fit inside the norms.  We have no idea what he's capable of.  We want him to be the best he can be, but we don't know what that is yet.

He's doing well in his new school, but every day brings a new challenge:
Will he meet a friend?  Will he have a tantrum and alienate people?  Will he learn what he needs to learn?  Will he be able to stay in school?  Is this the best school for him?

Maybe yes, maybe no. 

If you're not used to life outside the norm, what is that like?

It's like your kid trying a bike without training wheels.  It's like your teenager going camping with friends and your car and no adults for a week.  It's like your daughter going to the prom.  It's like your kid, coming home from college, and announcing that they're engaged to someone you don't know.  Every day.  

Every day feels like we're at a turning point, and we've got no stars to guide by.  We're outside the bell curve.  It's uncharted waters.

When you're outside the norm, the best you have to go by is what people who can see the big picture tell you.  That's the American Academy of Pediatrics and a whole host of other folks who have studied us outliers for years.  We're hoping our legislators will help us follow their path, starting tonight.

That was a year ago.  That bill passed.  Some other things have changed.  Medicaid now covers autism.  The Utah plan for that was announced this past Tuesday.  We live in a weird time for autism treatment.  Medicaid is by design the worst coverage you can get, but I wish we had it.  It's supposed to be the last resort, but they're going to be covering they should.  SB 57 will go into effect in January of 2016, but it's only going to add a small slice to the pie of coverage.  

In the meeting that announced the Medicaid plan, I heard parents say, "I saw the benefits for my kid from the Medicaid waiver, but now my kid won't have access to therapy."  That's probably true - on the other hand, the Department of Health expects that 4200 individuals will get treatment through the new plan, as opposed to less than 400 before.  That's a pretty big step forward.  It's time for organizations with self-funded plans to step forward and do the right thing - cover autism.  Do as well as Medicaid.  Insurance should cover this stuff - that's what it's for.

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