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?"
Driscoll knows therapy works. When her son Paul was just a little over a year old, he began throwing frequent tantrums. Sensitive to light and noise, he would hit himself in the face and bang his head on his crib. He would not speak. "This was my first child, so I wasn't sure what to expect," she says. More than eight years later, as his mother tells the story one Sunday afternoon at the dining room table in their suburban Northern Virginia home, Paul, now a chatty and personable boy, sits in the den watching a movie with the shades drawn and the lights turned off. When he began ABA therapy at age 3, he could barely speak, she recalls. Now, he's able to talk, have relationships with his siblings and other kids at school, and be included in a general classroom, she says, breaking into a smile. His need for intensive therapy has waned with each improvement. While the hours fluctuate, what was once upwards of 20 hours a week is now closer to 10. "I look at periods of time that are dark and ugly," she says, recalling the intense stress she first felt dealing with her son's condition. "It's that grieving period when you give your life up and your expectations for your child's life--that for me was a dark period."
Marine Corps Master Sgt. Buck Doyle and his wife, Kyla, like the Driscolls, have faced constant hurdles getting therapy for their 5-year-old daughter Kate. For months, their youngest daughter was on a wait list for therapy. After it began, the family then faced the bill--$100,000 in out-of-pocket expenses over a span of three years, forcing the family of four to move in with Kyla's parents. They had to sue Kate's school in order to get her into an appropriate class, which meant legal bills. All the while, Buck, assigned to reconnaissance, was deploying regularly to Iraq. Kate's doctor wanted her to have at least 25 hours of ABA therapy each week, but TRICARE paid for only six hours, leaving the family to come up with the rest. Kate's mother admits she consciously kept some of the struggles she was enduring to herself while her husband was in Iraq. She worried that if she had told him what they were going through while he was deployed, "he wouldn't have been able to focus on his job. And when you're getting shot at, you need to focus."
Buck's third deployment to Iraq was cut short when her worst nightmare came true. Her husband came home early after he had been shot by a sniper. Surviving and healing from a bullet wound would soon blend into the emerging stress the Doyles were facing in getting care for their daughter. Recently the family was given short notice that Buck would be getting orders to Camp Lejeune in North Carolina, where there are virtually no services for autistic children. When he refused the reassignment for that reason, he got pushback from within the service that could have led to his leaving the Marines after 20 years. Recently, though, he was offered a different posting that better suited the family. "This is a guy who would give his life for his country," Doyle says of her husband. "The one thing he won't do is give his kids' lives."
Paycheck to paycheck. Driscoll believes she has it easier than some families. Her husband brings home the salary of a colonel. They own a home that they've been able to milk of all its equity. "Obviously, that will affect our financial future," she says. Her family is adapting, living paycheck to paycheck. They haven't been on a vacation since Paul was born. She jokes that she's long overdue for a hair coloring. She knows the burden is greater for families of the enlisted--like the Doyles--or for those families with no credit to tap. Those families have little choice and are forced to forgo treatment for their children altogether. "It should not be so hard to fight for treatment. That's the reason I keep going," she says. The stories "bring on an emotional response for me personally. How can I help that family get to a better place?"
Congress has made incremental attempts to enhance benefits, but families say more needs to be done to ensure comprehensive treatment. In March, TRICARE launched a "demonstration project," broadening standards for whom it considers a qualified therapist to treat autism, a move meant to increase providers and expand access to treatment. In September, Congress voted to increase TRICARE's annual benefit coverage of ABA therapy by 20 percent to $36,000 per child. TRICARE still has to agree to pay, something some families say isn't happening even with a medical diagnosis. "To a parent with a child who can't speak, being told they won't pay for speech therapy--that's hard to swallow," says one mother.
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.
Military services are making piecemeal efforts to fill in where the medical coverage leaves off. In the past year, for example, the Marine Corps began offering families with special-needs members 40 hours of respite care a month and employing case managers and school liaisons to help families maintain treatment for their children and navigate the maze of services at their bases. The corps's changes were a result of Driscoll's lobbying for increased awareness about autism's impact on military families, according to Annette Conway, wife of the Marine Corps's commandant, Gen. James Conway. "She really went from being a mother struggling with the school system to a mother that ended up going to the Hill and winning legions of advocates," Conway says.
The Marine Corps is the nation's smallest service, small enough that officers' wives say they are able to form tight bonds that rival the ones forged by their husbands in combat. Conway, a former special education teacher, has become a pillar in Driscoll's support network advocating change. She applauds Driscoll as someone who looked at the problem "and said, you know, this is not the way it should be."
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