After years of major publicity efforts, Americans are increasingly aware of the prevalence of autism spectrum disorders in our country.
One in every 150 children, perhaps more, are afflicted by one variant or another of this disability, which challenges children – and in most cases, when they grow up, adults – in the areas of language, social interaction, and life skills needed to survive in this challenging world. Debates continue about what causes autism, but no one who has seen the problems in their own children, as we have, doubts its severity or its consequences.
Tragically, very little is done for most children with autism. That is mostly because treatment is so expensive, and so infrequently covered by the nation’s health care plans and insurance companies. Less than 10 percent of all affected children get the 25 or more hours per week of therapy determined to be the minimum standard by the American Academy of Pediatrics and other national medical policy organizations.
The Defense Department has an opportunity to set a precedent in this area, and Congress faces a golden moment to provide the legislation needed. The Pentagon may not seem the natural leader in health care for special needs children, but given how much are asked of our men and women in uniform and their families these days, it is only appropriate that the U.S. Armed Forces do what they can for their own warriors facing autism in their families.
If done properly, the Department of Defense (DoD) will also provide a model for other insurers and health plans to emulate. If at a time of war, the DoD can recognize the importance of funding prescribed autism treatment, it will send a powerful message for others to follow.
But first, a few words on what this treatment seeks to accomplish. The core method is Applied Behavior Analysis (ABA). In some ways it resembles one on one tutoring. But it is specifically attuned to the behavior issues and needs of children on the autism spectrum. ABA effectively develops and improves language and communication skills, social interactions, positive family relationships, daily living skills, and executive functioning. It teaches skills, step by step, that most typical children develop automatically by observing and imitating and interacting with others.
Careful analyses including a recent important Wisconsin study show up to half of the children receiving intensive ABA services can recover enough to be mainstreamed into the general education setting. Virtually no children with autism disorders achieve this outcome absent such help. With appropriate levels of intervention, they can often then become productive adults, form friendships, hold jobs and pay taxes – instead of becoming burdens of the state. Even for the more severely afflicted, they can learn many self-help skills through therapy that will greatly improve their quality of life and will reduce the chances they will need institutionalization later. They can develop family relationships; they may even be able to develop some friendships. It is not too much to say that in many ways they can reclaim the very humanness that autism steals from them.
These treatment methods aren’t perfect. As noted, while as many as half of all kids getting intensive intervention wind up mainstreamed in school, the other half still do not. Just as with cancer treatments and so many other wonders of modern medicine, what works for one child with an autism disorder may not work as well for another.
Additional methodologies for autism therapy such as Floortime and Relationship Development Intervention, though less well-established, seek to push the state of the art further. For some children, they may offer some benefits that ABA does not. Whatever the respective virtues of the various methods, they are clearly each better than no therapy at all.
Nonetheless, insurance companies often shamelessly cite the fact that the autism therapy field is still evolving to deny coverage, claiming the treatments are experimental. This is not only bogus, but heartless, and scientifically shameful. Another excuse used by insurers is that autism therapies are not medical in nature. Admittedly in some respects they look educational; admittedly they are often provided by a few (enlightened and well-resourced) school districts for older children. But autism therapy resembles speech or occupational therapy – methodologies that generally are covered by health insurance. And waiting until the school-age years for intensive therapy is waiting too long in any event.
Back to the Department of Defense. Military children with special needs face unique circumstances and stresses. The continuum of care afforded to military children diagnosed with autism is disjointed and compromised due to the frequent geographic moves and the lack of effective services available publicly and through the Department’s main health care program known as TRICARE.
- Wait lists for state-run programs exist in most states. This effectively denies care for our military children who wind up bouncing from the bottom of a wait list to another wait list as they move from duty station to station.
- Effective treatment programs are far beyond the resources and ability of public schools to deliver (and also beyond the personal means of most military families). Ongoing relocation makes it extremely difficult to pursue legal options to compel schools to provide for effective services. Expecting families to enter legal proceedings at each duty station to maintain basic care is unrealistic.
- Many military families choose to pay for medically prescribed autism treatment themselves, to the extent possible, and incur significant debt. This unduly burdens already stressed families, which often have one parent deployed abroad these days.
Understanding the difficulties military families experience, TRICARE provides for limited coverage of autism therapy up to $2,500 a month. That is good, but therapy can easily cost more than $5,000 a month (one of our children just broke the $10,000 monthly barrier).
Treatment delayed or not provided at the prescribed amount diminishes effectiveness – and also hurts the warfighter overseas, who should not have to be distracted by excessive worries about his or her children and their ability to access desperately needed services.
There is reason for hope. Recently, led by retired U.S. Navy admiral and Rep. Joe Sestak, Pennsylvania Democrat, the House passed legislation increasing funding of ABA to $5,000 a month and establishing procedures to accelerate access to needed therapies for our military children. The DoD costs would not be trivial, but would be measured in the tens of millions a year and not the hundreds of millions or billions. Moreover, the financial impact today is far less than the long-term consequences to society of not providing for effective treatment.
Now families are seeking support and assistance from our Senate leaders to pass similar legislation. It is an excellent moment to help many of our nation’s warriors and their families, and in so doing, to set a standard that can ultimately help hundreds of thousands of children with autism throughout our country.