Autistic Kids: Who Should Pay?

It's a war you can see coming, a war where there are no bad guys, a war that breaks your heart, a war for which you will be asked to chose sides . For the latest volley, see this article from the Boston Globe: Push on for Insurers to Share Autism Cost.

Watch this war heat up between two titans - the health insurance industry and the educational system. It's a border war. At issue is where to find the immense resources needed to pay for therapeutic services for autistic children.

You can see how the stage has been set for this looming battle:

• The numbers are huge. Currently it's estimated that about one in 160 (or about 560,000) children in the U.S. are autistic.


• Everyone agrees that the treatment of autism should begin as early as possible (sometimes as early as age 2 years) and that it needs to be intensive (say, 25 hours/week).


• Let's do the math. The American Institute of Research estimates the annual cost to educate an autistic child in public school is between $15,900 and $21,700. (The average annual cost for a students in public education is $7,600. If we say $17,000 a year per autistic student, that means the annual cost for educating 560,000 autistic kids would be more than $9 billion a year.
  

No exactly chump change, even in these outrageous times (hey, how about an autism bail-out?). So who should pay?

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What the School System Says:

We can't pay for this. We have a small lump of dollars to educate all of America's children. Every dollar spent on special education means one dollar less to educate typical children. We know that if they are to be helped at all, autistic children require intensive services (physical therapy, occupational therapy, speech therapy, applied behavioral analysis, to name a few). We simply can't afford it, or else we'll have to cut educational funding a lot for the vast majority of children.

Anyway, this is a medical problem, caused by a neurobiological problem. As such, it falls well within the purview of health insurance (just as mental health issues do).

Health insurance must pay the lion's share.

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What the Health Insurance Industry Says:

This is not a medical problem. The treatments are primarily educational, not medical. We pay for medically necessary care, not, for example, basic skills training. Sure, we'll pay for 60 days of physical/occupational therapy to rehabilitate an injured patient, but not daily therapy to educate a developmentally disabled child for 20 years. Additionally it's always unclear how much of these therapies are needed. Is 4 hours of speech therapy enough? Of course, more is better, but how much is enough? There is simply no good scientific evidence for the efficacy of almost all of the autism therapies. The treatment plan is therefore a decision best left to the child's teachers, who know him and his individualized needs.

The educational system must pay the lion's share.

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So, Who's Right?
First, it pains me that we even need to have this discussion. SOMEONE needs to pay for the intensive treatment. One clear measure of worth as a society is how we care for our most disadvantaged, needy citizens. And autistic children and their families are right up there. But who wants to pony up for the billions needed? Imagine how you would feel if you were the parent of an autistic child and couldn't provide the recommended therapies for your child because of the lack of money. That should never happen but - hello! - it does every day. It's shameful that we as a society still haven't (and likely won't) agree to provide the requisite services for these children and their families.

OK, so most agree that we need to pay for the therapy of autistic children and that it will cost a lot. Someone has to pay.

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Some states have entered the fray and passed laws mandating that health insurance companies foot much of the bill (see, for example, Pennsylvania which makes the insurance companies liable for up to $36,000 year in treatment expenses!).

One way or another, as the insurance and educational titans duke it out, you may asked to pay a share, either through increased health insurance rates or increased property taxes for schools. So again I ask:

Who should pay?

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Dr. P Weighs In:
I have to say (and to my own surprise), I am on the side of the health insurance companies on this one. I think autism is primary an educational, not a medical challenge. The wonderful autism teachers and therapists - not insurance companies - are in the best position to decide the nature and intensity of the interventions. They should be given the resources - through their own special educational systems - to provide those therapies without being in the terrible bind of robbing those dollars from much-needed services for typical and even gifted children.

The bad guy here is our woefully under-funded educational system and how we chose (or chose not to) fund it (property taxes - don't get me started). It's a non-system bound brother against brother, where if one wins, the other loses.

Frankly, I'm guessing that if there were adequate resources, the school systems would agree with me, as would most parents. Their current position of looking to health insurance is purely pragmatic and strategic - because that's where the money is and because, unlike the school system, health insurance companies can simply raise their rates and do not need to ask for a vote of the people to do so (which is usually rejected by disgruntled and older property owners).

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What About Now?
As this gets sorted out (if it ever will), parents of autistic children will remain in the untenable position of scrambling to get services paid for. Here are some questions to ask your health insurance as you advocate for your child's needs:

• What are the individual and family out-of-pocket deductibles before 100% reimbursement begins?


• How many visits per specialty (i.e. PT, OT, Speech) does the insurance allow per year for in-network and out-of-network providers mental health coverage?


• Most children with autism need physical, occupational, speech, psychological, feeding, social and behavioral (ABA) therapies. How well does your insurance company cover these therapies?


• What about coverage of supplies and equipment (e.g., augmentative communication devices.


• The squeaky wheel. If you feel you have the right to insurance coverage based on your policy, and you are running into problems getting that coverage, resubmit and even consider filing a grievance.
  

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It's so sad to me that we are even having this discussion and that part of my job is to help parents learn to game the insurance and educational systems to get their children the therapies they need and deserve. A she-bear advocate is, alas, what is usually needed.

Paying for this should be a no-brainer and not our current dysfunctional system where desperate parents are pitted against beleaguered, underfunded special education systems and recalcitrant health insurance companies. But here, alas, we are and, until such time this gets settled, likely to remain so.

Related Topics:

• Individualized Education Programs (IEPs) for Autism
• Autism Support Group Message Board