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Autism and Health care: Sticker Shock

Teresa J. Foden
IAN Assistant Editor
Kennedy Krieger Institute
Date Published: 
June 18, 2008

Up to 50 families a day in the United States receive the news that their child has autism spectrum disorder (ASD). Any small comfort they may experience upon arriving at a logical explanation for their child’s language delay or odd behavior is likely to be only momentary. In the weeks and months that follow, families typically discover hundreds of treatment options, many of them lacking solid scientific evidence that they are effective for children with ASD. Maybe applied behavior analysis (ABA)? What about speech and language therapy, or occupational (fine motor) therapy, or sensory or auditory integration therapy…or some combination?

Then comes the realization: Medical insurance is likely to cover little, if any, of the services their child will need. Who is going to pay for all this? Research shows that families bear much of the financial cost of the therapies and treatments needed to address the communication and behavioral issues of ASD. 1 According to a 2007 study, 2 parents facing the high cost of autism treatment raid their 401(k) retirement accounts, sell their investments, or even declare bankruptcy. Schools lack the staff and can’t afford to pay the high cost of ABA for each child with autism; health insurance may be inadequate to cover therapies for autism; and the wait for state-funded programs can be long.

“As a result, parents desperate to find ways to help their child will pay thousands of dollars out-of-pocket or attempt to administer some therapies themselves.” 3

Information, please

Insurance companies are profit-making enterprises, and have shareholders to please; public health programs, including Medicaid, are overburdened and chronically under-funded; and schools face growing demands from parents while limited by budget realities. 4

“The number of treatment options currently available can generate frustration and confusion as well as hope…. [Effectiveness] of some treatments is supported by scientific studies, while other treatments may be experimental and have only anecdotal evidence of any beneficial results,” according to the 2007 study.

The issue of autism treatment, and funding of the treatment, is shared by much of the world, despite a hodgepodge of different health care systems. As a 2003 report from Children’s Mental Health Ontario 5 said: “Evidence-based treatment guidelines are especially important in the field of ASDs as this field has been plagued by significant differences of opinion and controversies over treatment methods….”

Data harvest

The Interactive Autism Network (IAN) is among those seeking to contribute to the body of scientific evidence that will help guide treatment decisions in years to come. IAN’s research may help bring into focus which treatments are used most frequently, which are deemed most effective, and which are most often discarded by those on the front lines of ASD: the families themselves. IAN families report using more than 300 different autism treatments, with many of the families using several different treatments simultaneously. (See “IAN Research Report #5 -- February 2008.”) Making this information available to parents and researchers, and ultimately, to advocates, legislators, and the public, will lend the muscle needed to effectively pressure legislators, courts, and the insurance industry to address the cost issues related to autism treatment.

As a paper in the Annual Review of Public Health 6 said: “Science can identify solutions to pressing public health problems, but only politics can turn most of those solutions into reality …. Politics, for better or worse, plays a critical role in health affairs.” 

One of the most promising treatments is intensive behavior intervention, including applied behavior analysis. 7 8 9 10  ABA involves breaking skills down into simple parts that are then taught to the child using a system of reinforcement. ABA is recognized as an effective treatment by the American Academy of Pediatrics 11 and received support nearly a decade ago in a Surgeon General Report. 12

However, treatment sessions can run $30,000 or more annually 13 and may not be covered by health insurance. In addition, waiting lists for certified ABA therapists can be long. 14

The insurance mandate...agent of change?

Parents and advocates in the United States are working on many fronts to have ABA removed from the list of exclusions for many insurance companies. Recent court cases 15 have upheld parent petitions for coverage of this treatment,  and autism advocates and legislators in some states have instituted or proposed insurance regulations requiring coverage of ABA, as well as other therapies. A few companies, including Microsoft and Home Depot, 16 have led the way in establishing group insurance coverage in the workplace that includes treatment for autism.

Legislators in Florida, Texas, Indiana, and numerous other states have responded by imposing mandates requiring private insurers to cover ASD treatments. But there are potential drawbacks of mandates, such as cost trickling down to policyholders (although advocates say the cost would be minimal in this case) and insurance companies potentially avoiding states with the most expensive mandates, shrinking insurance options.

The Council for Affordable Health Insurance, a research and advocacy association of insurance carriers, said in its 2008 report on state mandates 17 : “Mandating benefits is like saying to someone in the market for a new car, if you can’t afford a Cadillac loaded with options, you have to walk. Having that Cadillac would be nice, as would having a health insurance policy that covers everything one might want. But drivers with less money can find many other affordable car options; whereas when the price of health insurance soars, few other options exist.”

The bottom line

There remains a disconnect between what research says about treatments, what parents want to try, and what insurance companies and public assistance programs can, or are willing to, pay. The system for U.S. healthcare is complex, a maze of coverage limits and exclusions that defy attempts at navigation by the layman and expert alike. Most people have few options for health care coverage, choosing from the limited menu offered by their employer or among even more limited private insurance plans. Mandates for coverage of ASD, as well as other health issues, are gaining support state by state; however, those in the health industry warn that mandates drive up cost, which will only be passed on to the consumer. The solutions will be based on achieving a balance between research/data, policymaking, and legislative initiatives.

While the debate about the cost of ASD is only just taking form, it’s safe to say that the issue has made it onto the main stage of public debate, which is a crucial step to achieving success. As one study put it: “Numbers alone are insufficient to push an issue higher on the governmental agenda…. A problem must be especially salient to important constituencies in order to overcome public ambivalence about governmental intervention into what are ordinarily private affairs.” 18

Ideally, scientists will reach agreement about the causes of autism and the most effective treatments. In turn, policymakers will have better information to guide their strategies to address the rising incidence of autism. But including the social models of disorders is also important, with, “society would begin to understand the need to embrace all individuals, including those with autism.” 19

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