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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A TRICARE spokesman acknowledges that diagnosis rates do not necessarily mirror those receiving treatment. "Having a diagnosis code and receiving treatment for the condition represented by that code are two different things," spokesman Austin Camacho said in an E-mail, later adding, "It is difficult to track benefit use in this case because there is no specific treatment for autism." TRICARE reimbursement rates are generally tied to Medicare rates by statute, he explained. "We pay what they pay, except for a few localized exceptions Congress has allowed us to make based on limited access to care."

What is known by the Pentagon's top brass, however, is that autism is having a ripple effect straight through to the battlefield. "The assurance of family care is critical for mission readiness," the Navy's surgeon general, Vice Adm. Adam Robinson, wrote in an internal memo earlier this year. Maj. Gen. Thomas Deppe, Air Force vice commander, went further, saying the quality of life for families in the Air Force is "compromised by the lack of services and supports" provided by TRICARE programs. TRICARE's treatment policies affect "the morale, readiness, and retention of the all-volunteer force," Gen. Richard Cody, the Army vice chief of staff, wrote in an internal memo advocating "a federal solution to overcome the gaps" in care.

Driscoll continues to believe military leadership wants to help families, but help depends on action by Congress to change the guidelines for TRICARE. She lobbies as hard as she can, fueled by the thought that awareness will be enough to spur change on Capitol Hill. She hasn't been prepared, however, for resistance. Her voice breaks as she recalls the day she told a legislative staffer she had received a letter of support from a top military commander at the Pentagon. The staffer said the military leadership was lying to her about its intent to pressure for changes to the TRICARE system, reducing her to tears. "As a mom working tirelessly to advocate for reform, this was a difficult blow, and I took it hard," she says. "I guess it was my awakening to the coldness of [a] very bureaucratic system."

Out of pocket. For one Air Force family, the lack of coverage for a 6-year-old son will most likely result in the service losing two doctors. Maj. Nirvana Kundu, an anesthesiologist whose wife is also a service physician, said his son's therapy would be disrupted if the family had to relocate from his current duty station at California's Travis Air Force Base, which means he will be leaving the service as soon as possible. The threat of deployment or change in duty station hangs over the family. "I can either have a lot of uncertainty, which is bad for my son, or I could have no uncertainty," he says about his decision to get out.

Kundu's son is in a 35-hour-a-week therapy program in California, something that would be difficult and disruptive to replace if they were to move to another duty station. Under the TRICARE demonstration project with relaxed provider standards, Kundu now receives $2,500 a month in reimbursement, which he estimates covers about a quarter of his son's monthly expenses. "It would be like telling a kid with cancer we're only going to give you a quarter of what works," he says. The family has been forced to come up with the remainder of the monthly therapy bill totaling almost $8,000. "We knew we had to spend the resources now or our kid would be broken forever," he adds.

Schools have a significant role in treating autism, but the quality of therapy offered in schools varies widely from district to district. Schools focus on only the behaviors relevant to the classroom and aren't equipped to take on the range of other behaviors that take place outside of the school-yard. Military parents often feel as though school districts try to wait them out until they move to another base rather than provide services they say their children are due under federal law meant to ensure equal access to education. Shrinking school budgets are prompting a push to transfer services to the healthcare sector, says Susan Pisano, spokesperson for America's Health Insurance Plans, a Washington, D.C.-based insurance industry organization.