Autism

Insurance, HMOs, and Bike Rides

Published June 02, 2009 @ 12:16AM PT

Charlie riding his bike May 2009
"Legislation for autism treatment" has practically become synonymous with "insurance coverage for ABA" here in the US. As I've noted, ABA has been the basis of my own son's education since he was two years old; while it's hardly the only way to teach kids on the spectrum, it has helped him to learn, speak, ride a bike (and by the way, Jim has told me he wants to write another bike-riding post soon---I am more than encouraging him, now that June is here!).

There's more that insurance should cover for autism than ABA, and not only for children. Autism is a lifelong disability, and individuals may well need services of different sorts at different times in their life. We do know many families who've noted how insurance coverage would help them out a great deal and I was puzzled by a recent article from the "Sunday Insight" section of SFGate that specifically points the finger at children on the spectrum and their families as driving up costs at HMOs. The article is by Alain Enthoven, professor emeritus of management at the Graduate School of Business at Stanford University, who argues that ABA is strictly an "educational intervention[s]" that health insurance need not cover:

There are proposals, not yet in legislative language, to require California HMOs, in addition to the medical services they already provide, to cover extensive educational and behavioral services for autistic children, services that are more appropriately the responsibility of state regional centers for the developmentally disabled and of school districts. These services have been estimated to cost more than $40,000 per child per year.

The state and the schools are in financial trouble, funding for the regional centers is being cut back and parents of autistic children understandably want HMOs to be required to provide the services. As a grandparent, my heart goes out to the families of autistic children who are working to procure potentially beneficial services such as behavioral modification. But these are not health care services, and the solution is not to burden already straining health care budgets with the costs of intensive educational interventions best delivered in schools or at home.

Certainly it's not only the potential needs for therapy of children on the autism spectrum that are driving up health care costs. While it would be great if school districts could provide all the necessary therapies and services for children on the spectrum, most do not. Some parents have been able to work out a combination of services from school districts and insurance companies. We've been able to find a school district that provides ABA for Charlie at school and some parent training at home, but this is hardly the norm.

For Charlie, learning is directly connected to being "well."

Riding a bike has, there is no question, improved Charlie's quality of life. I guess that might seem a rather odd statement to make but it is very true. Aside from the obvious benefits of exercise, and fitness, bike riding has given Charlie a kind of freedom that he rarely is in the position to have, due to the extent of his needs. As he's 12 now, he'd be able to drive in just four years here in the US, but becoming a "student driver" is something Charlie is most definitely not going to do. He'll have to rely on Jim and me or someone driving him places, or on public transportation, or on his own two feet. He's not able to go on a bike ride by himself, but I know from Charlie's face when he's whizzing down the street with Jim behind that he knows the thrill that he can get places by himself.

And that knowledge (and the aerobic exercise) help Charlie tremendously, in terms of his health of course, but also in his learning, his sense of himself---his self-esteem. And (in a most likely unscientific way) that adds up to him doing well, in whatever setting.

Alain Enthoven writes that "as a grandparent, my heart goes out to the families of autistic children who are working to procure potentially beneficial services such as behavioral modification," but his singling out those very families as somehow improperly seeking insurance coverage for their children makes his statement ring more than a bit hollow. Far from "straining health care budgets," providing insurance coverage for children on the spectrum can help them be well, be healthy and----one more than hopes---have a good life and the life that they---that my son---more than deserves.

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Comments (7)

  1. lisadom dom

    Be sure to share the arguments, because we rely on our state services to provide for appropriate interventions. Extrapolating the concept of health as a result of independence is a great concept, and one we should incorporate into our campaigning.

    xx

    Posted by lisadom dom on 06/02/2009 @ 05:54AM PT

  2. Katie miller

    We could also single out people who smoke, overeat, and make other poor healthcare decisions for raising the costs of HMOs. Or, we could single out people who dared to be born with expensive disabilities, or who so rudely developed cancer, or, or, or. I'm being sarcastic here, but there is a grain of truth to what I'm saying. There are lots of medical needs of specific populations that are expensive. If they're going to make that arguement, why stop at autism?

    Posted by Katie miller on 06/02/2009 @ 08:53AM PT

  3. John Ruch

    I have to say, that post by Jim on lasso training Charlie and their subsequent bike adventures has stuck in my mind. I look forward to an update. Teaching my son to ride a bike has become a long term goal, but for now he is happiest riding in an attached trailer. I even brought it up during his IEP this spring to try and work peddling skills into motor skills work. I hope the juxtaposition of HMO's and bike rides in the headline does not belie a learning lesson, and if it does, I hope everyone has fully recovered.

    I have to say I have mixed feeling about insurance coverage and autism. I agree with part of what Enthoven  said, that we must "..recognize that the educational and other supportive services autistic children might need are a broader societal responsibility...".  (However, it would have been better if considerate grandpa Enthoven also disclosed that he had been a consultant for the Kaiser Foundation Health Plan) Services should be available to all kids, and adults, not just those with good insurance. At the same time, utilizing autism services should not impact employer insurance premiums such that it pushes people to hide autism or reward discrimination. I also wonder what the impact will be on public educational programs that are leading the way in providing optimum programs. Will they feel disobliged to offer certain services now that insurance companies are required to cover them? If so, will those services be available outside of school hours locally, if they are available at all? Will and influx of money for services without a corresponding influx of trained providers really result in change? Will the learning day get extended beyond what a child can be expected to cope with?

    I personally believe the free public/private educational setting is the most appropriate and meaningful way to efficiently and effectively deliver services for kids, not that cost control isn't an issue there as well. At the same time, there need to be minimum national standards developed and imposed (along with federal funding) so that this battle does not have to be fought in every home rule fiefdom. The funding and provision of autism services for kids needs to be worked out hand in hand with education. For now though, hopefully a lot of kids will start to get the service they need, and hopefully more thought and funding will be put into services fo adults.

    Posted by John Ruch on 06/02/2009 @ 12:38PM PT

  4. Kristina Chew

    I share a lot of your feelings about insurance coverage and autism. Charlie's done best when ABA has been fully a part of his school day. On the other hand, I'm not sure how we would have managed to pay for his early years of intensive ABA ourselves (family was very generous).


    Am already worrying about an "influx" of providers who really (even with credentials like a BCBA) don't seem to know what they are doing.

    Thanks for noting that about Enthoven, ahem........and Jim is most definitely not done blogging about "bike rodeo." Many happy rides to you and your son!

    Posted by Kristina Chew on 06/02/2009 @ 09:46PM PT

  5. Reply to thread
  6. Ecki Stern

    A personal note about bike riding. My 7 year old daughter with a PDD-NOS diagnosis just learned to ride her bike without training wheels last week. She's been out riding every day since. And she's had ZERO meltdowns in school or at home and a few of her lingering repetitive behaviors have stopped (finger flicking and repeating phrases from TV). Coincidence?

    Posted by Ecki Stern on 06/02/2009 @ 05:12PM PT

  7. Kristina Chew

    Hooray!  


    Bike riding therapy is next..........

    Posted by Kristina Chew on 06/02/2009 @ 06:32PM PT

  8. @Ecki. I am so happy your child learned to ride a bike. I think it is important to tell parents and their children how happy we are for small successes. Congratulations again.

    Posted by L I on 06/03/2009 @ 10:36AM PT

  9. Reply to thread

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Kristina Chew

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.

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