By Jeremy Hilton
I am a Navy veteran and spouse to an active duty Air Force member. After our daughter, Kate, was born with a number of significant disabilities, I resigned my commission to be a stay-at-home dad. This year I was honored as Military Spouse of the Year for my advocacy on behalf of military families.
A recent National Council on Disability study of the Exceptional Family Member Program (EFMP), which serves military families with special needs, concluded that “far-reaching systemic changes are needed in our nation’s health, education, and long-term service systems to address the significant barriers faced by [Exceptional Family Members].” Here are three examples where the leadership and advocacy of lawyers within the Special Needs Alliance can make a difference to military families.
Like civilian families, military families often rely on government programs to care for their children with disabilities. But most state Medicaid waiver programs have long waiting lists, and given the frequency of military relocations, our children seldom reach the top. We are currently exploring a variety of options to fix this issue, all of which would require legislative action. These include a military Medicaid waiver, allowing service members to maintain list-eligibility based on their home of record, or extending the ECHO (Extended Health Care Option), designed to bridge the needs of military families unable to access state-run Medicaid programs, into retirement (https://www.tricare.mil/Plans/SpecialPrograms/ECHO). Our experience, however, has been that ECHO, in practice, lacks the flexibility to replicate Medicaid benefits. Senate language in this year’s National Defense Authorization Act (NDAA) is a first step in this process. Many more are needed.
The military lifestyle also plays havoc with special education. Reestablishing medical care, educational services and therapies with each move is a full-time job. If both spouses work outside the home, there is little ability to track changing laws and regulations to ensure a child receives a free, appropriate public education. School districts sometimes take cynical advantage of this situation. Having taxpayer-funded law firms at their disposal and realizing that military families often lack the time and money to mount a legal battle, they may gamble on not providing services to which our children are legally entitled. They understand that, at some point, military families will be moving to their next duty assignment.
Service members also face a dilemma concerning estate planning. Unlike civilians, they may not roll survivor benefits into a special needs trust. This means that if they name a loved one with special needs as beneficiary, that individual will likely become ineligible for means-tested government benefits that are central to their survival. The Disabled Military Child Protection Act, HR 4329, was recently introduced to correct this inequity. But despite its very modest cost, it was not included in the House or Senate version of the NDAA. We will continue fighting this battle in Congress until an appropriate remedy is found.
Military families whose loved ones have disabilities face a multitude of unique legal issues that on-base attorneys are not qualified to address. In addition, the potential legal fees are often beyond their means. I applaud SNA members for their advocacy on behalf of military families, including their involvement with the American Bar Association’s Operation Stand-By—through which they volunteer to answer questions from military attorneys assisting service member clients. Your continued support is invaluable and so very appreciated.