This is Hunter. He’s six. He loves peregrine falcons, Pokémon, Dogman comic books, and climbing trees. He hates needles.
If my math is right, though, Hunter’s been poked by just over 200 needles in the last six months. Hunter is a Marine Corps kid and a Type 1 Diabetic. That makes him a mandatory member of the Exceptional Family Member Program (EFMP) club.
When Hunter was diagnosed with Type 1, there were three things I knew nothing about: (1) Type 1 Diabetes. (2) EFMP. (3) How any of this would impact our future as a family – particularly as a military family.
Right away it all became clear, though, that the impact was going to be profound.
Upfront, let me do some myth dispelling: Type 1 Diabetes is not Type 2 Diabetes. Minus the fact that they both involve insulin, they’re really nothing alike. Type 1 Diabetes is an autoimmune disorder in which the beta cells in the pancreas stop producing insulin. Left undiagnosed or untreated, Type 1 kills – quickly. Hunter did nothing to get Type 1, it’s not contagious, and it has no cure. Hunter will live with this disease for the rest of his life.
Hunter will live with needles the rest of his life.
As long as he’s a military kid, he’ll also live with the Exceptional Military Family Program (EFMP).
EFMP is a mandatory-enrollment program that exists to support families with medical, mental, and educational special needs. It hangs its hat on offering two kinds of help: making sure a family’s unique needs are taken into account during the assignment process and supporting families to make sure they’re aware of and connected to the resources they need.
When you have a kid diagnosed with something scary, your brain plays a thousand tricks on you. What if this had happened at our last duty station? How are we going to take care of them? Will he have to leave the military? Will we ever be able to afford care outside of the military? Are we going to have to rely on TRICARE forever?
EFMP families know what I mean.
As the dust settles, even more questions come into view: What do we do during deployment? How can I hold down a job and be the caretaker he needs? How will we pay for the care he needs if we aren’t both working? Is military life going to be possible anymore?
In theory, too, EFMP exists to answer some of these questions and keep us calm. But the reality of life with a special needs family member is that no case is the same – and solutions are individualized, too.
As it happened, Hunter was diagnosed just after we moved approximately twelve minutes from one of the best children’s hospitals in the nation. We’re in a school district that has a full-time nurse in every school, an aide on the bus whose only job is to watch his glucose levels and keep him safe, and a 1:1 aide with him all day long, every day. He’s supported by an incredibly robust 504 plan and a district with the financial means to fund it. We are very, very lucky.
But this wasn’t the result of EFMP policy. It was countless hours of lobbying the district, consulting attorneys, working with specialists, accessing medical supplies above and beyond what’s covered by TRICARE, studying the Americans with Disabilities Act, reaching out to experts, and leveraging a tribe of parents in similar shoes. It’s hundreds of hours of work and a never-ending fight to keep it in place.
How can we ever move?
We’ve looked at the places we’d likely be stationed, and we know the districts there don’t offer the services we get here: The school nurse who is there all day, every day, and is an incredible partner in Hunter’s care. The classroom aide who makes sure he’s fine minute-to-minute. The bus aide who allows him to participate in the social stuff with his peers. The incredible specialists, researchers, nurses, and medical team members we have access to because of our hospital – all of this is a result of living here.
So we don’t think about moving. We homestead. And while that answers immediate questions for Hunter – all in ways that keep him safe – it raises even more. Are his dad’s career prospects affected by assignment limitations? If we moved with him at some point, would we have to wait to receive the kind of immediate-access specialty care we have now? At some point, will the growing out-of-pocket costs we assume trump our commitment to service?
This week, NMFA is testifying before Congress on behalf of military family members like Hunter. As the leading nonprofit dedicated to serving the families who stand behind the uniform, NMFA is relaying our stories to legislators, pushing for answers to EFMP families’ questions, and standing up for families affected by EFMP policies.
This is Hunter, and he needs our help.
Posted by Raleigh Duttweiler, Public Relations Senior Manager