Military Parents Battle the System to Help Their Autistic Children

Unmet treatment needs add to family strains from transfers and war-zone deployments.

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Karen Driscoll might seem the unlikeliest of lobbyists to cruise the halls of Congress. Indeed, the Marine Corps wife and mother with three young children, one of whom has autism, didn't envision herself hustling down the marbled corridors in a power suit. Yet, on a recent fall day, Driscoll is maneuvering her way like a K Street pro, eager for any opportunity to make her case that the Pentagon's healthcare system is failing active-duty military families with autistic children, families like her own.

And there are many of them. By the Pentagon's own data, some 13,243 of the estimated 1.2 million children of active-duty military personnel have been diagnosed with autism spectrum disorder. Only 1,374, though, are qualified to receive treatment under the extended care arm of the federal healthcare program TRICARE. A congressionally mandated hybrid of both military and civilian medical services, TRICARE is the military's healthcare program for active-duty servicemembers, retirees, and their families. The cause of autism, which strikes about 1 in 150 children nationwide, remains a mystery. And for reasons that aren't clear, autism is diagnosed in military children at roughly double the rate it is in the civilian world, a striking 1 out of 88, according to Defense Department data.

Pressure. By themselves, the numbers tell only part of the story. Driscoll has become the chronicler of heartbreak and knows that, for each family, there is the challenge of doing what is best to help the child through what is often a long-term and costly program of intensive behavioral treatment. Layered on top of that are near-constant wartime deployments that strip households of a parent for extended periods. The hardships for military families are compounded by the realities of frequent moves that disrupt or end altogether treatment programs such as applied behavior analysis therapy, or ABA, which medical experts say makes a huge difference in the lives of autistic children. The skyrocketing out-of-pocket payments for expenses not covered by TRICARE are forcing some servicemembers to consider volunteering for additional combat deployments, which come with tax-free danger pay, to help dig their families out of debt. And the financial pressures are prompting some to leave the military, a development that officials warn is harming military capabilities.

Driscoll has gone to the Hill to battle on behalf of her own autistic son, 10-year-old Paul, and others like him, arguing that military healthcare has left families stranded. On this, she can speak with authority. For the past four years, she has put in countless hours, drawn on income and home equity, and taken on thousands in debt annually to get her child the medically prescribed therapy not covered by the military's healthcare program. "The majority of families who face the circumstance of having to pay out of pocket for therapy are simply going without. That should never be the answer for military children," says Driscoll. "This is a devastating medical condition that is treatable, and children can make significant gains."

Autism is a developmental brain disorder that can rob children of their speech or even the ability to look their parents in the eye. And because there is no cure--only intensive therapy aimed at minimizing the impairment--it is considered a chronic disorder, as persistent and deeply rooted in one's health blueprint as arthritis or high blood pressure. Yet, according to the Defense Department's own data, 90 percent of military children diagnosed with autism are not receiving ABA therapy treatment.

It's not from lack of trying, military families say, criticizing the TRICARE system for its classification of intensive therapy as education rather than a medical necessity. This rationale, they say, allows the healthcare provider to justify what families regard as an arbitrary cap for ABA treatment services. This is not an issue limited to military families, with some states reviewing the rules for private-sector insurers. Seven states have enacted legislation mandating autism coverage from private-sector insurers, and similar bills are pending or anticipated in more than 20 states. But these measures would not directly affect TRICARE because it is a federal program. "Do we really want to have a system where a kid living in one state may get a better quality of care than a kid living in another state?" asks Stuart Spielman, senior policy adviser for Autism Speaks, the nation's largest autism advocacy organization, based in Washington, D.C. "Think about the extraordinary sacrifices that military families make," he says. "If we're asking someone to risk his or her life in Iraq or Afghanistan, do we not have an obligation to help their families?"