Friday, February 10, 2012

Catch 22 on steroids

You win - I give up
At the end of this post I said I was going to wait to talk about the joys of trying to get insurance coverage for medical services related to autism. I guess I'm ready to talk about it now.

So, hopefully everybody knows the Catch 22 from Joesph Heller's book. The basic concept it that if you're crazy, you can get sent home from your military service, BUT, if you have enough self-preservation instinct to want to get out of your military service, you're not crazy enough. Another defining aspect is the rule has to be instituted from above, from a bureaucracy that you can't approach or question.

Many things about autism are just like normal, but more intense. A simple question feels like being given the third degree in the police station. A food with an unexpected texture causes gagging. Slightly off-key singing is fingernails on the black-board annoying. I guess it only goes to reason that the autism medical Catch 22 takes Catch 22 and raises it to the next level. You get not one, but two bureaucracies, but that's not all.

Here's how it works:
  • You need assessments to get Special Ed services and to get the right services for an autistic individual, you need someone who understands autism* to give neurological or cognitive assessments**
  • The only assessments the school system will pay for are from generalist who don't have an understanding of autism
  • Your medical insurance will fund neurological assessments, but only if they are far enough removed from education needs to not be deemed as redundant to something a school system would give
  • If you contact a medical provider who will be funded by your insurance and ask them to tailor their assessment to educational needs, they will tell you that they have a standard evaluation and that there is no way to do anything different
  • If you find a provider who will give you a neurological assessment that is suitable for educational use, they will tell you that they don't deal with insurance companies because they typically won't cover an assessment that is usable, but because of that they can charge about 20% of what a full blown, but unusable assessment will cost
  • When you contact your insurance company and ask if you can be reimbursed for a medically based assessment that costs much less than an assessment that they will cover, and you're willing to pay up front and wait for reimbursement, they will tell you that there is no out of network coverage for behavioral health issues
  • When you explain that this is a medically based assessment and you do have out of network coverage for medical services they will explain that neuro-psych is not medical
Here are your bonus point questions if you have made it through reading all that nonsense:
  1. How many hours of my life have been lost to mapping out the mysteries of this total dead end?
  2. Where the money will come from to have a usable assessment done?
I'll give you the answer to #2 - that same big bucket of money that our FAFSA form said we could afford to pay for college every year that I have yet to find.

* - A valid question as far as this "someone who understands autism" goes is how are you expecting to get appropriate services from a generalist? I believe that if you have a kid like msk who's generally cooperative and if you have a provider who is willing to do some research and follow the lead of the kid and if  the provider genuinely wants to presume competency both from the kid and the parents, services can work out quite well. I know there are a lot of if'sinvolved, but it is doable.

** - I want to emphasize that we're talking about neurological assessments - pretty much the heart of what it means to be autistic. Assessments that are on the edge of autism and deal with symptoms (for example speech and language or an educational assessment from a special educator) can have valid results when there's not a lot of autism-specific interpretation going on. In terms of cognitive assessments, IQ results for autistic individuals are notoriously unreliable. I you don't believe me you can google it or look here or here.

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