April is the Month of the Military Child, an awareness month established to underscore the important role children play in the Armed Forces community. In this issue of Military Families, we profile one military spouse who tirelessly advocates for our military children and their healthcare.

Jeremy Hilton did not realize his Navy training on nuclear reactors would prepare him for the more tedious task of taking on TRICARE. The veteran had spent eight years in the Navy when he and his wife determined a dualmilitary relationship would no longer work for the unknowns that they were about to encounter. Hilton’s wife, Renae, was serving in the Air Force when they found out they were expecting a baby girl. Their daughter Kate was diagnosed with hydrocephalus — a condition that causes excessive fluid buildup in the brain.

The couple recognized that she would require round-the-clock care. “It really related to deployment schedules. At the time, the thought process was, because I was on shore duty, if I go back to sea duty — you can be gone 270 days out of every year. And we knew for Kate’s situation, it’s a two-parent job, frankly,” Hilton said. “The Air Force just doesn’t deploy as much — and we looked at what gives our family the best chance of frankly survival because we knew it was almost a two-or-three parent job with Kate’s condition.”

Hilton transitioned out in 2003. Today, he is one of the most well known healthcare advocates for military children. He says he feels a sense of commitment to speak up for a demographic that sometimes feels voiceless. “When you’re in D.C., I’ve always felt some sort of a responsibility — because you’re here — that it’s your opportunity to really make a difference because of your locale.

It’s so easy to go up to the Hill, or go talk , to someone in the White House or go to the Pentagon. I’ve always felt an obligation to … try and make a difference for our families.” He adds, it is typically the people who can’t afford to have their voice not heard who don’t have the time or means to get in front of those decision makers.

The Early Years

Hilton explains that it was that beginning chapter of their family life when he had the least amount of time to devote to issues he was seeing within the Exceptional Family Member Program (EFMP), a program that helps military families manage care for a family member with special needs. Rather, his full attention was spent wearing many hats. “I was a therapist, I was a case manager, I was doing everything I could possibly think of to give our daughter as much of a chance as she could have, long-term.

Early intervention really does matter,” he said “For the first five to six years of her life, my focus wasn’t on advocacy. It was really focused on her. And, it was really a full-time job. All these other parents you talk to will tell you, until the kids — and luckily our Kate has, relatively speaking, stabilized, you’re just constantly thinking about have I tried this, what else is out there, doing medical research on your own.”

From Frustrated Parent to Trying to Improve the System

It wasn’t until the family was stationed in the Washington D.C.,-area that Hilton had his first real connection to the advocacy space. He and other military families joined forces to submit an Inspector General (IG) complaint against the Air Force’s EFMP. The case was found in favor of the families.

“You start to figure out yes, I’m ‘just’ a military spouse, but I can make a bigger impact than many of our active duty folks can. They can’t really speak out. We have the freedom as military spouses to do things that our active duty spouses don’t …,” he said. “One voice can make a difference, in our case it was 16.”

Hilton started attending meetings with more experienced advocates  and had what he considers to be onthe-job training. He also credits his military training with teaching him how to hold people accountable.

“I’m a nuclear training guy, we read stuff like reactor operating manuals. We operate in the anal-retentive world because it is one of the things you don’t play around with. You don’t take shortcuts. You don’t not do what the manual tells you to do

“It’s always a boom or bust and when the bust happens, it seems like military families are always the first on the chopping block”

because you will get people killed, and so my vision for the way the rest of the military operated was you
should do what you are told,” he said. “Military family stuff seemed to operate in this different world where instructions and DOD regulations were flexible.”

Hilton began challenging these instances. One of his more recent projects has been working on an effort known as The Tricare for Kids (TFK) Coalition — comprised of children’s health care advocacy and professional organizations, disability advocacy groups, military and veterans’ service organizations and military families committed to ensuring that TRICARE meets the unique health needs of the more than two million children of military  families, according to the website.

One of the group’s leading principles is that military children should have access to the same standard of care that civilian children receive as recommended by the American Academy of Pediatrics. For more information on TFK priorities, visit http://www.tricareforkids.org/.

Hilton says the ongoing battles on behalf of military families have not diminished his confidence in the Department of Defense, but it is disheartening to feel like families are the easy target when problems arise.

“I don’t think it’s broken my faith. I think there are ways to get things fixed in the military, there are still ways that the military families can have a voice. I think it’s become harder to find the right way to do those things because there’s so many competing interests, especially when dealing with an environment like sequestration. It’s always a boom or bust and when the bust happens, it seems like military families are always the first on the chopping block. These people have put their lives on the line for the better part of more than a decade and now you’re telling us we cost too much?”

Jeremy’s Cheat

Sheet for Advocating on the Healthcare Needs of You and Your Family:

• Dig into what your rights are and understand what those rights mean. Know the nuts and bolts of your insurance, which can be found on TRICARE’s website: http://www.tricare.mil/,

• Learn the differences between TRICARE Prime and Standard; between care when you are active duty versus reserve versus retiree,

• Lean on the online community that exists,

• Know your audience – on the Hill you will deal with staffers who are likely unfamiliar with certain DOD processes,

• Do your homework, and

• Pick your battles