I just read another great blog post on the Autism Speaks blog about one of the champions of the autism legislation across the United States, Lorri Unumb, who now directs the policy initiatives for Autism Speaks. She discusses about how the law, Ryan’s Law, came to be in South Carolina not too many years ago and since its passage all of the other state’s that have followed suit with similar legislation. Even my home state of Florida followed in that wake and now has insurance company mandates to offer coverage for people with autism – even more expensive therapies like Applied Behavior Analysis (ABA). She also makes a note that the battle is only half-won and she is dead on. As a matter of fact I would even argue that the real war hasn’t even begun yet! You can read her post here.
You see it largely has to deal with money and responsibility. There was a time when I worked in the private sector and our total out of pocket costs for paying for our most challenging son’s ABA therapy from a private provider and all related costs came close to $3,000 per month. My son was 3 years old at the time. That is all we could afford an we could only afford those therapies for one of our, at the time, two autistic sons! Do you know the feeling of only being able to afford life-changing treatment for only one of your sons and just “hoping” for the best for the other one? Heart wrenching, but we had no choice. Those decision led to severe financial challenges in that period of our lives even despite a high-paying senior corporate management job and a fairly successful self-employed business. Michigan doesn’t have autism insurance mandates like the twenty six other states in our union that do (click here for a map of the states that do have coverage). The challenge comes down to who is responsible for handling the problem and subsequently who will pay the bar tab for it? Whoever accepts responsibility for it picks up the bar tab. The problem is that both the government and the big insurance carriers both have developed “alligator arms” (you know, when the waiter brings the check and everyone at the table starts mockingly patting their coat pockets and pants pocket as if they are digging out their wallet, but hoping that someone else will pick up the tab while they make these gestures that looks like, well, an alligator). Insurance carriers deny coverage for critical treatments (even in state that have mandates – Mrs. Unumb discusses the road blocks companies put up to deny claims) and then point at the public school system and say, “This isn’t a medical issue, it’s an educational issue. It’s the state’s problem!” Not to be outdone and shafted with the bill, the school systems says, “We’re providing the minimum required under special ed laws, ABA is too expensive and not necessarily an educational intervention. Insurance needs to cover that. It’s insurance’s problem!” And they go around and around.
The war will begin as more media exposure through awareness, more funding to dig into research from the public and private sector, you and I writing blogs like this to discuss it and the massive growth of the autism population that is exploding into the public schools fold every year! It has to come to a head at some point. Parents, ultimately have THE responsibility in caring for and educating their child the best way they know how. For whatever eternal purpose, God gave that interesting and unique child to you with perfect plans in mind. It is what it is. We accept our responsibility, but at the time this issue is a social issue that affects everyone. So, we have become educated parent-advocates who fight for the best services provided under IDEA and we happen to have an insurance provider who does provide coverage for those very important service through our military insurance provider Tricare. Those with autism who aren’t treated properly by SOMEONE, SOMEHOW will in all likelihood end up like the unfortunate autistic man I discussed here yesterday who is facing 10.5 years due to inadequate, learned communication techniques, living off the ever decreasing pot known as Social Security and Medicaid, or perhaps far, far worse.
Ultimately, it is a societal issue and in some how some way all will be affected by it at some point. It is my hope that the affect is more positive and encouraging than a lost and abandoned people suffering from a society that has an ultimate lack of care, concern or responsibility. The government will not solve the issue. The insurance carriers shouldn’t be asked to carry the entire load. I don’t have any answers myself at this point, but it is my hope that more will be done, somehow and in someway to learn more about the disorder, educate the masses about it and provide the best we can for our autistic population.
In Advocacy,
Mike
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