Autism is a disorder, really a neurological condition that is typically diagnosed early in childhood that is characterized by huge difficulties in communication and forming relationships with other people. These challenges are due to the way the people with this condition use language and interpret abstract concepts.

My son is a four year old on the autism spectrum. He sits in the mild side, and has been in treatment for a while to treat his various developmental struggles. He is far from alone in these struggles. The autism spectrum is a wide range of severities of this disorder but it is said that more than 1 in 100 kids (more like 1 in 88) sits on the spectrum and requires some kind of treatment. These treatments can be shockingly costly.

Many of these treatments have been covered by our insurance company as every therapy he has been in was prescribed by a medical professional. He has been to neurologists, speech therapists, occupational therapists, all kinds of stuff. The co-pays alone would boggle your mind.

Then we come to today. He goes to one of his two regularly weekly scheduled speech therapy appointments that, until this week has been covered. The health care provider puts in an authorization request for treatment before his appointment (as is their normal procedure), and it is denied. That is strange, why now, why not a week ago?

Something strange is afoot at the Circle K you say?

Wait for it, this gets worse.

It turns out that under the Affordable Care Act they, according to the insurance company, they are required to only cover these types of therapies for “restorative reasons.” What is a restorative reason you ask? They can cover more but it is at their discretion. So, what company would do so if they don’t have to? Well certainly not this one.

Put another way if he had been in an accident and lost the ability to speak they would help, otherwise they won’t. Autistic kids are out of luck I guess, at least to go through a qualified private insurance covered speech therapist.

I was angry for a variety of reasons mostly because this is landing on us with no warning.

So, I asked, what is going on? When did this change?

Oh a letter was sent out 3 days ago? On Friday, and today is Tuesday? Nice, I guess I haven’t gotten or read that yet but ok.

I asked the question, what are these kids supposed to do? Have no shot in life? Medical professionals can prescribe a treatment and unless you can afford the $250-$400/week in cost out of pocket your kid is just out of luck?

No, that isn’t the case, the insurance company representative says. I can appeal (which they told me would in all likelihood be denied but I can do it), or I can go to the local school system department of special education.

So let’s review:

  • Covered last week not covered today
  • Costs of my policy go up year over year
  • Out of pocket just increased by at least $1000/month for a procedure prescribed by a medical professional (and that doesn’t include all the increases in copays elsewhere).
  • Coverage is shifting away from treating those with diagnosed disabilities, sort of.
  • Because of his age he might be covered merely by an already overspent public school system according to the insurance company (the school district disagrees).

Put another way the ACA through some convoluted process just shifted what should be a medical procedure onto the school system?

I guess they wanted the federal deficit numbers to look better for the kids they have to cover through the subsidies? Could that be the case? Surely not…No, they would never forget to tell the whole truth right?

Does that seem like how things are supposed to work?

It appears as though we are playing a shell game of which part of the government goes into debt to do the job it was design to do. Also this brings to mind what qualifications the school system has to do therapeutic treatments that should be done by someone trained specifically for this purpose. Or is the Department of Education just working its way into all aspects of our life so that it never gets cut back and only grows?

Whatever the reason is this monstrously large bill that was supposed to bring down costs is certainly having issues proving its worth beyond some kind of procedure requiring a band aid or the most cursory of treatment.

As an interesting PS to this story. I was on twitter venting about this and got pounded by several people from one of the two major political parties. One statement said, basically, I didn’t get it and that it was all for the “greater good.” Another insane defender of all things done by one party said that, essentially, not that long ago no one got anything.

The “no one got anything” statement is interesting because instead of fixing the problem by making sure everyone gets something we are stripping coverage on an obviously pre-existing condition and blaming corporate greed. I am my wits end with the partisan garbage. We no longer care about solving problems in this country merely about assigning blame. We do this while parents have to figure out how to help the very small children that we are supposed to be doing all of this to help. I will find a way to make sure Emmit gets what he needs, but it sure would be nice to be able to keep the coverage I liked, without that price going up yet again or coverage being reduced even further, but I can I can keep my doctor if I pay for it out of pocket while paying the insurance company to do less with more.

I guess we hoped, and we got change.

Tim Imholt PhD

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