As a Marine Corps wife, Karen Driscoll is well versed in the concept of waging battle. For more than five years, at times while her husband was deployed to war, she has fought to insure her autistic son Paul has access to therapy through military healthcare.
For Paul, and thousands of other military children with autism, the battle over semantics - or whether autism therapy is a medical treatment -- is keeping them from receiving the very treatments already largely afforded to civilians through insurance coverage. The result is that military special needs families are shouldering the burden of providing therapy themselves, and stitching together what they can from state and school services.
The scenario leaves any future recovery hanging by a thread.
For 12-year-old Paul, that thread started to unravel when his family moved to another duty station, his therapy was disrupted and his behavior began to regress.
"Here in the general population, these services are available and showing great success, yet our military children cannot access appropriate level of services because TRICARE is saying they're not effective," Driscoll says.
Going to Court
The military medical benefit system, administered through the program TRICARE, is congressionally mandated. But ABA therapy, according to TRICARE, is considered a non-medical procedure. Military dependents are only able to access the intensive ABA therapy largely acknowledged to help counter long term effects of autism through acceptance into TRICARE's Extended Care Health Option (ECHO).
Military families say, however, that the policy unfairly shifts the financially debilitating burden of care onto their shoulders at a time when private sector insurance coverage is embracing the need to cover ABA therapy for autistic children. The families say that TRICARE's layering of bureaucracy forces them to waste months on wait lists, squandering time considered crucial in reversing impacts of autism. The delays in accessing care for many families have been compounded by routine moves to new duty stations and combat deployments.
The class-action lawsuit, which goes to court this month, would force DOD to grant military servicemembers ABA therapy as a medical benefit comparable to those provided in the private sector. It's a provision that is already protected by law in 26 states. For Driscoll, whose husband has 27 years of service in the Corps, it would mean their son could have access to ABA therapy after his father retires.
According to the Centers for Disease Control, an average of one out of 110 children in the U.S. has an autism spectrum disorder (ASD). Defense Department data shows, by comparison and for unknown reasons, that one out of 88 children in military families is diagnosed with ASD.
Out of the estimated 1.2 million children considered military dependents, fewer than 3,000 are receiving treatment for autism through TRICARE's extended care special education program, according to the benefit provider.
Driscoll says that while TRICARE's ECHO program is an attempt to expand autism therapy, it falls woefully short of addressing the needs of the tens of thousands of military families thought to be affected by ASD.
Paying for Care
As campaign director for Autism Care and Treatment Today (ACT Today) Military Families Fund, Driscoll has a direct line of sight into the need. Since its launch in July 2010, ACT Today has dispersed $70,000 in treatment grants to military families. Dozens of applications from families with treatment expenses surpassing $100,000 await funding, she says.
DOD officially recognizes that about 12,000 military dependents with ASD, a number Driscoll claims is understated due to TRICARE's reporting metrics. Furthermore, she says, those families who are lucky enough to be included into the ECHO program find that TRICARE policies often don't provide for the prescribed level of therapy, place low dollar caps that amount to half of what is medically recommended and effectively become to a policy barrier that limits treatment to only a small fraction of the military families dealing with autism, she says.
Typical military medical benefits have no limit on coverage after a $1,000 deductable is met. It's "kind of the bargain made with servicemembers," to provide a generous healthcare package, says David Honigman, lead counsel for the class-action lawsuit. By denying that ABA therapy is a medical necessity for autistic dependents, families face the annual therapy bill out of pocket, which averages about $70,000 for at least the first few years, he says.
"It's a tragedy. The only chance these kids have to live a fully human life is this therapy," Honigman says.
While TRICARE officials would not comment on the pending lawsuit, they did share with Care.com the rationale behind their classification of ABA therapy. "Upon review of the applicable laws, regulations, literature, and the positions of other third-party payers, TRICARE determined that ABA is not proven medically necessary and appropriate care for autism, but is an educational intervention that augments other services, including proven medical care, to address the effects of ASD," TRICARE said in a statement.
"ABA behavioral interventions work," says Stuart Spielman, senior policy advisor and counsel for the Washington, DC based Autism Speaks in Washington, DC. Like any medical treatment, research will be warranted on its efficacy, he says. "That should not mask the fundamental replicated truth, which is that most kids benefit when they get these treatments."
"People like Karen who have basically devoted their lives to helping their country, have tremendous claim to getting the healthcare that has shown to be effective for their kids," Spielman says.
"Families face the difficult decision of paying thousands of dollars out of pocket each month or forgo the services their child needs to reach their full potential," Driscoll says. "That should never be the answer for a military family that already sacrifices so much in their service to this country."
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