After his daughter, Kate, was born with special needs in 2002, submariner Jeremy Hilton left the U.S. Navy for a new mission: caring for Kate. Sea duty required frequent absences, so Jeremy and his wife, Renae, decided he would leave active duty, while she continued her Air Force career.
During her first five years of life, Kate had multiple surgeries, and spent many hours in therapy and doctor’s appointments. All the while, the family’s military life followed the usual course: deployments, moves, the birth of their son, Jackson. The Hiltons learned a lot—the hard way—and wanted to help others in similar situations.
“We learned where the gaps and weak spots are in our system for families with special needs,” Jeremy says. “These are broken things. If I don’t try to fix them, who’s going to?”
While the Hiltons were stationed in the Washington D.C. area, Jeremy added a new component to his mission: advocating for military children like Kate. He put his hard-won knowledge to work, testifying for multiple congressional committees and writing for major publications.
Jeremy was named Armed Forces Insurance Military Spouse of the Year in 2012, the first male to receive the title, and used the platform as a megaphone to advocate for medical care and better support for military families with special needs.
He wrote about being an effective advocate as a coauthor of Stories Around the Table: Laughter, Wisdom, and Strength in Military Life.
Though military moves have taken the family to a new home, Jeremy still keeps a finger on the pulse of Department of Defense policy issues affecting his daughter and other military kids.
As part of the Tricare for Kids Coalition, he continues to advocate for improvements and reform in military pediatric healthcare to better serve the needs of military families. Jeremy says changes are needed to close gaps in medical coverage for children with special needs and to improve accessibility to state programs for mobile military families. Often, those families are not in one place long enough to reach the top of state waiting lists for services.
“Practically every year since (the coalition’s) inception, we’ve had some luck getting legislation introduced to the National Defense Authorization Act,” says Jeremy. He maintains a legislative history of those changes, which he makes available to anyone, and says it’s important to build awareness and keep this topic in front of policy-makers and legislators.
Continuing Advocacy
Jeremy has returned to the civilian work force and also continues his work as an advocate. He offers his expertise individually, when someone reaches out to him for help, particularly military families impacted by disabilities, and he continues to push for policy and program changes.
One avenue for military families reach out to policy-makers, says Jeremy, is through the Military Family Readiness Council. The council, created by Congress, is a federal advisory committee whose sole purpose is to hear from military families, on any issue. The meetings and records of the council are open to the public. Military family members can submit information and attend the meetings, which are held at the Pentagon.
Jeremy created the DoD Military Family Readiness Council Information Page, an unofficial page to keep military families informed about the council meetings before and the issues they cover.
“I know and have worked with many of the council members over the years, all in unofficial capacities, sending them information when I think it will help,” says Jeremy.
Sources of Strength
Though Jeremy has seen improvements over the years, he’s also seen some government policies and pronouncements that look good, but don’t bring real change. He emphasizes there is still much the military should do—not just say—to support families with special needs.
“We are still five to ten years from getting this right,” he says. “An entire generation of military kids has grown up—literally since the start of the Afghanistan war to today—and things are marginally better.”
The road to creating change in a bureaucracy is a difficult one, but Jeremy says he finds strength in his family and his faith.
“When thinking about the roadblocks life puts in front of us, whatever the source,” he says, “I remember Philippians 4:6-7, ‘Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.’”