Managing the care of a child with special needs is time-consuming and stressful. But for military families, who must relocate every three years, the process is grueling. A recently published study, co-authored by the National Council on Disability and the U.S. Marine Corps, details the challenges faced by participants in the Marine Corps’ Exceptional Family Member Program (EFMP). Such difficulties, though, are shared by families with special needs across the military branches.
The repeated hunt for services can be maddening, and families often find themselves traveling long distances to gain access to specialized therapies. With each move, they must begin anew to negotiate an Individualized Education Plan (IEP). The Marine Corps reports that “with great regularity, parents described feeling that they must fight schools to secure disability-related resources for their children—a lengthy process that may not be resolved before a family has another permanent change of station. This can involve incurring legal fees that the family will not be reimbursed unless they see the case to a successful conclusion.” Because families must often move without precise knowledge of the school district in which they will live, planning ahead is often impossible.
Most onerous, though, is the need to reapply for Medicaid with each move to a new state. Medicaid waiver lists are years long, and every relocation sends their loved one to the bottom of the list.
The report observes that the paperwork, research and negotiations “can be so time-consuming that it becomes impossible for the spouse of an active-duty Marine to work outside the home.” Families complain that it can take up to 18 months to reconstruct a child’s support system.
Under these circumstances, gaps in education and therapies are common, and it’s difficult for a child with special needs to progress.
Outside the report’s purview are additional issues relating to retirement benefits. Active service members are eligible for ECHO (Extended Care Health Option), which covers supplemental therapies that aren’t handled by the military’s TRICARE health insurance. Upon retirement, though, ECHO coverage ceases.
Another quandary involves the military’s Survivor Benefits Plan (SBP), which can channel up to 55 percent of a deceased military person’s retirement pay to a dependent child. That income, though, can threaten the child’s eligibility for SSI and Medicaid, often needed for supported living, day programs, job coaching and other services. Many argue that it’s unfair that military parents can’t assign SBP funds to a special needs trust, since civilian families regularly do so with both pension and life insurance benefits.
Clearly much must change in order for military life to accommodate the needs of families with special needs. But it’s more than a military problem. The Marine Corps report, while recognizing the need to improve services, notes that many required adaptations “are beyond the control of the Marine Corps and may require statutory and regulatory changes…”