Speaking up for those who can't

Jeremy Hilton has testified for congressional committees and written for Time magazine, but he’s neither politician nor pundit. He’s been interviewed by network anchors and the ladies on “The View,” but he’s neither business mogul nor movie idol. He’s not the frontman for a band, but he could be called a rock star.

Jeremy is an Air Force spouse and an advocate for military families with special needs, including his own family. He and his wife, Renae, have two children, Jack, 3, and Kate, 10. Kate has multiple disabilities.

A former submariner, Jeremy left the Navy to become a stay-at-home dad after Kate’s birth. Her first five years were marked by multiple surgeries, thousands of hours spent in therapy and doctor’s appointments. All this as Renae’s career followed the usual course: deployments, moves, transitions.

“We moved five times before she was 7,” Jeremy said.

Two consecutive assignments in the Washington, D.C., area have provided the family some stability. Jeremy decided to put his hard-won knowledge and proximity to Capitol Hill to work as an advocate for military children like Kate.

“We went through all those transitions with her,” he said. “We learned what it took and where the weak spots in our system exist. These are broken things. If I don’t try to fix them, who’s going to?”

Jeremy began speaking out for families like his, and his platform helped him become Military Spouse of the Year for 2012. The commercially sponsored title, conferred by Military Spouse Magazine, gave him national visibility, which he’s used to advocate strengthening the support system for military families with special needs.

Jeremy said the system has community and military components, both in need of change, offering a few examples of a complex set of problems.

On the military side, he explained that while Tricare covers most medical issues, there is a whole spectrum of special needs that are not covered. For example, certain widely used therapies for autism are classified as “educational” by Tricare and are not covered.

On the community side, military families often have difficulty accessing programs like Medicaid, because the services are wait-listed by state. Jeremy explained that waiting list times are much longer than standard military assignments. When a family moves, they go to the bottom of the list in their new home state, further delaying care.

Those who assume that military health care and state benefits automatically cover all the needs of a disabled family member are not alone. Jeremy said government representatives don’t have the whole picture, either.

After a briefing about military families and state-based waiting lists, a Department of Health and Human Services representative said to Jeremy, “I just hadn’t thought about military families.”

Words like that motivate Jeremy to communicate the urgency of the issues wherever he can, but he said changing the system via bureaucracy is slow, complicated and frustrating.

“People are usually very open to this and want to help,” he said. “They can say until they’re blue in the face that they understand and that this is important but …” he spreads his hands. Translating words into meaningful action is the challenge.

“It’s my job to get the word out,” he said. “What I’m trying to accomplish is to figure out ways to access what is available, so we aren’t penalized for being military families,” he said. “We’re not asking for anything above what the civilian world has. We’re asking for parity.”

 He’s hopeful that First Lady Michelle Obama will take notice of special-needs military kids through her Joining Forces program. He said the issue of state waiting lists is tailored to the kind of work Joining Forces does.

Although he speaks out for families like his, Jeremy said his actions might not affect his daughter’s care, because change happens slowly.

“But they’re going to impact a lot of other children coming behind us,” he said.

Aware of  the parents caring for special-needs kids who don’t have the time or opportunity to speak out, he said, “Somebody’s got to stick up for them.”

Contact Jeremy at ktp1995@gmail.com, on Facebook at www.facebook.com/DoDMFRC, or follow him on Twitter @jlrmhilton.

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