Military health care plan fails families with disabled children

Raising a disabled child is never easy. But some things can make it even harder than it has to be. Being a military family is one of them. Take Tyler, the 5-year-old son of Navy Petty Officer Second Class John Denman and his wife, Georgina. Brain damage at birth left Tyler prone to seizures and unable to speak. But "he will coo, and he will cry, and he will smile," said his mother, and "he responds wonderfully to music." Tyler breathes through a tube that must be carefully suctioned several times an hour, to prevent his saliva from choking him or breeding infection. Although Tricare, the health insurance program for service members' families, covers much of Tyler's care, his mother noted that "in April of 1998, Tricare pulled Tyler's nursing [care]. It has never been reinstated." So Georgina has learned to do much of the care herself, and gets help from nurses paid by California's Medi-Cal program. More than 70,000 military families have a disabled child or dependent who requires special care or schooling. Their ailments range from relatively minor learning disabilities to severe physical impairments such as Tyler's. Yet the system created to help them has disabilities of its own. The problems lie not with the nurses, doctors, teachers, and specialists providing the care, it is with the bureaucracy that surrounds them, military families say. "At the ground level, [with] the actual primary caregivers, we've been very blessed with their dedication," said Gregory Hagen, an Army intelligence analyst stationed in Europe, who is fighting to get special-education services restored for his autistic son, Erik. "What's frustrating is that the bureaucracy for which they work is not very adaptable, not very flexible, and not very capable of providing uninterrupted services." Take Sam Sapp, 11-year-old son of a retired Navy man, who like Tyler Denman breathes through a tube. When the family lived in Florida, the regional Tricare contractor paid for 16 hours a day of home nursing; but when the family retired to Oklahoma, the Tricare contractor there covered none. So the Sapps had to move to Missouri, where Sam's care is covered-not by the military, but by private insurance and by Medicaid, the federal program run by the states. And therein is the rub. Caring for a disabled child or adult, even within a civilian system, is a juggling act involving many social service agencies. Add to that a layer or two or three of military bureaucracy, and it becomes an entire circus. At Fort Lewis, Wash., Mary Parker's full-time job, at Madigan Army Medical Center, is to help coordinate services for disabled members of military families. Parker said that providing appropriate services for just one disabled child involves coordinating at least five agencies: Tricare, Medicaid, the Social Security Administration, state welfare agencies, and charitable nonprofits. On top of that, kids attending special-education classes also need attention from the local school district or the Department of Defense Education Activity, the group that runs on-base schools. No wonder benefits are inconsistent and confusing for families. Yet few military hospitals have a full-time coordinator like Parker: "I don't believe that I've met anybody yet who does what I do [for families]," she said. "There are people there who can tell them what agencies are out there, but there are not people who can help them get through the maze." Worse, the maze changes every time a service member is transferred to a new base-generally every two or three years. According to a 1998 study by Specialized Training of Military Parents-a parent-support group based in Tacoma, Wash.-the typical lag between a military family's arriving at a new base and its getting the services it needs is six to nine months. And for some families, even the services they do get are unreliable. Many parents feel that the struggle never ends. Kathy Edwards is an Army wife, herself wheelchair-bound, whose 11-year-old son, Alexander, was badly burned three years ago and requires periodic skin grafts as he grows. "I don't feel like, regarding Lex, that the military health system, nor Tricare, have ever been on our side," she said. "It is a constant battle to get what I need to help him." It is not supposed to be this hard. Each branch-Air Force, Army, Marines, and Navy-runs its own "Exceptional Family Member Program" to make sure troops with disabled dependents are assigned only to bases where appropriate services can be found. "If we know in advance, we can usually get the family member to an area where their needs can be met," said Carl Grube, a civilian official in the office of the Army Surgeon General. "Early identification is crucial." But many troops do not want the military to know that a family member is disabled. They fear they could lose out on career opportunities if they are restricted in where they can be assigned. Marine Corps Commandant James Jones recalled his experiences as a young officer with a severely disabled daughter: "I knew there was an Exceptional Family Member Program, but I had the impression ... if I signed up for that, that I would be earmarking myself and restricting other people from considering me as fully assignable and deployable," Jones told Marine Corps Times in June. He added: "What my wife and I would like ... is to do away with that thinking." But even parents who do use the program don't give it high marks. "I have found it to be completely useless," said Georgina Denman. At one base, "the coordinator didn't have any concept of what type and level of need my son had," she said; and when that base closed, the family found its next assignment nearby, not through the program, as it should have, but by sheer luck when a friend stumbled across it. Other families have been sent to bases that were supposed to meet their needs, only to discover on arrival that special-education funding had not yet arrived or that key medical specialists had moved away. Such problems are not surprising when even a top-flight facility such as Madigan has only one full-time special-needs coordinator-Parker-for about 400 disabled children. Many bases have only a part-time coordinator, who must also perform several other jobs. "Families end up in places and there's no service there," said Rebecca Posante, of the Pentagon's newly created Office of Educational Opportunity. But she said it's unfair to blame the Exceptional Family Member Program entirely. "There's no way that any organization can know everything that's available," she said. To help parents find services themselves, and to help the family program officers, Posante is putting together an official Pentagon Web site that will include comprehensive contacts at local bases, relevant military regulations, and, above all, a message board on which parents can exchange information about what's available where. "The best way," Posante said, "is for people to tell each other." One of the big problems for military families is inconsistency of benefits from place to place and from time to time. Jacqueline Lichnock is a Navy wife whose 4-year-old son, Christopher, breathes, like Sam and Tyler, through an easily infected tube: "You constantly have to have your eyes on him-and he still kept on getting sick," she said. "We're not skilled nurses; we don't know how to listen to his lungs." But Tricare has repeatedly refused to pay for Christopher's costly round-the-clock nurses, only to back down repeatedly in the face of his mother's ire. "It's life-sustaining care, and I shouldn't have to fight for it" each time, said Lichnock. "It should be a given." But under Pentagon regulations, such "custodial care" is not a given at all. Christopher's nursing is provided only as a special exception to Defense Department policy. Most private-sector health plans also decline to cover "custodial care," but Tricare defines that term even less generously. Civilian plans generally exclude as "custodial" such labor-intensive, low-skilled work as helping the severely disabled bathe, eat, walk, take their medications, and relieve themselves. But military regulations go further and exclude any care that is provided outside a hospital and will go on indefinitely without improving a patient's condition-even if that patient would deteriorate or die without the care, and even if only trained nurses can provide it. The Pentagon's idea is that families will fall back on the payer of last resort-Medicaid. But most military families move every few years, confronting Medicaid benefits that vary wildly from state to state, and that in many places exclude families that have only recently moved into a state. Therefore the Defense Department last year, pressured by lobbying, lawsuits, and lawmakers, created a system of waivers that allows Tricare to cover custodial care-but only at Tricare's discretion, on a case-by-case basis, with cost control in mind, and as part of a package with Medicaid, nonprofits, and other agencies. So the challenge again becomes one of coordination: how to weave the disparate benefits together into a seamless blanket of services. Tricare's new "Individual Case Management Program" assigns each severely disabled patient a case manager to help harmonize the different agencies. It is a promising idea, but so new that the final regulations are not yet written and only 43 patients are enrolled so far: The estimated annual cost to the Pentagon of caring for just those 43 patients is $6.3 million. Congress has put a spending cap on the program of $100 million annually. The new program gives some hope to military families with disabled kids. But what Congress gives with one hand, it may take away with the other. Come this October, as part of last year's legislation to boost military benefits, Tricare must offer health insurance coverage to 1.4 million military retirees over age 65-the age group with the highest incidence of disability. That program may mean that retirees will get more of the limited money for managing disabilities than the families of troops who are still wearing the uniform. Generational competition could end up hurting the Tylers, Sams, and Christophers.