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Situation for Military Kids with Autism Is Shameful

(Image: cmkaa.org.)

I’m going to go ahead and start this post off by saying that I am biased. Really, really biased. Way back in the years B.C. (before children) I served in the U.S. Army. I am now a mom, and my youngest child is autistic. I spend a lot of time trying to access the right services to help him, and that’s without dealing with military acronyms and red tape every day.

On Tuesday, a Congressional briefing will take place to educate legislators of the challenges faced by military parents of autistic children.

Currently, families of military personnel have medical insurance called TRICARE. TRICARE does not cover autism services. Those services are available by enrolling in ECHO — Extended Care Health Option. To get ECHO, you have to first enroll in EFMP — Exceptional Family Member Program. EFMP makes sure that you won’t be stationed anywhere that your family member can’t get services, which is a great thought, except many servicemembers are reluctant to enroll because it’s seen as career-limiting.

But back to the autism services.

ECHO, the supplemental insurance that covers autism services, is only available to active duty military and their families, not to retirees. That includes “medically retired” retirees, by the way. So a Wounded Warrior — a soldier who retires because his legs are blown off in Iraq — cannot access autism services for his or her child.

Um, yeah. Let’s look a little more.

ECHO has a dollar cap of $36,000 a year. That’s about enough to get your child 11-12 hours of Applied Behavioral Analysis (ABA) therapy a week, far below the 25-40 hours a week recommended for children (especially younger children or the more profoundly affected) who need ABA.  Also, the dollar cap includes not just things like autism services, but respite services and durable medical equipment. So if your kid needs a wheelchair, that’s going to take away from the autism services you can access.  Likewise, every hour of respite service you access is an hour less of therapy your kid can have.

Do you know what respite is? It’s having someone come to your house to give you a damn break. You know who needs a break? Moms and dads of autistic children whose spouses are over in Kuwait trying really hard not to die. But if catching that break means your child can’t have the services she needs, you’re going to suck it up and just go slowly (or rapidly) insane from providing constant care to your autistic child.

A bipartisan bill, the Caring for Military Kids with Autism Act (H.R. 2288) was introduced by Congressmen John Larson (D-CT) and Walter Jones (R-NC). It is now being co-sponsored by 35 additional representatives from both sides of the aisle, thanks in large part to the hard work of a handful of military parents. (Is your congressperson supporting HR 2288? Check the list here.)

Rachel Kenyon is one military spouse who will be speaking at the Congressional briefing on Tuesday.

“The process of accessing ECHO and getting a diagnosis can take months, or even years,” said Ms. Kenyon in a phone interview with me. “Some parents do have an easier time, and that’s phenomenal. We wish that every family had that experience. But for everyone else — we really shouldn’t have to wait this long to get a diagnosis and get care.”

Ms. Kenyon’s daughter has autism, as well as a chromosomal deletion that has necessitated several surgeries.  She had to tell her husband, an active-duty 25-year soldier, about her daughter’s autism diagnosis over the phone while her husband was in Afghanistan on his third overseas deployment. Ms. Kenyon’s husband is a sergeant major currently stationed in the United States.

“If it’s this hard for us and my husband’s a sergeant major, how hard is it for families of privates?” Ms. Kenyon noted.

Proponents of H.R. 2288 seek to take autism services out of the supplemental ECHO program and put them into the TRICARE insurance so that they are easier for all military families to access, and so that families aren’t forced to choose between things like wheelchairs and therapies. They also seek to remove the the $36,000 dollar cap so that kids who do need more services can access them.

I asked Ms. Kenyon why military kids can’t just get their services through their local school district, like my son does.

“They can, but every time you’re relocated, your IEP [Individualized Education Plan] has to be re-created. So you lose time and you lose services during that gap,” she explained.

“Also, any state services you might receive, like medical assistance, have to be re-applied for in the new state. Again, that takes time.”

Ms. Kenyon also pointed out that although 29 states have enacted legislation requiring medical insurance companies to cover autism services, those laws do not apply to TRICARE, a federally-funded insurance plan.

Ms. Kenyon, who also blogs at Stim City, is not a complainer. She’s a proud military wife who considers it an honor to be married to a U.S. Army soldier.

So, um, I’m going to complain on her behalf.

WHAT THE HELL?

Don’t our military families give up enough? Don’t they sacrifice enough that it shouldn’t be that damn hard to get their kids the help they need? Don’t you think that if you’re hoping every day that your husband doesn’t die, that you might not have the energy it takes to jump through that much red tape?

And seriously? People who retire from the military due to injury and disease can’t get autism services for their kids?  Because we all know that good-paying jobs with excellent insurance plans are just rolling the hell in for disabled veterans these days.

This situation is just plain shameful.

As a civilian, of course I believe that it should be easier for all parents to get the help their kids need. Anyone who thinks the autism diagnosis is being handed out like candy should go ahead and try to start the process of getting their kid evaluated. Go ahead. I’ll wait. But I’ll be waiting a really long damn time because it’s not easy.

It’s not easy for me, and my husband isn’t in the line of fire. It should not be that hard for people like Rachel Kenyon to help their children. They have enough to worry about, and we as a nation owe them that help. We do.

I know this involves money. I also know that it’s a drop. in. the. bucket. when you look at the Department of Defense’s current annual budget of $683.7 billion.

I asked Ms. Kenyon what people can do to help her cause.

“Write your legislator,” she said simply. “It boils down to public support, and getting staffers to understand, and getting the members of Congress to understand, that civilians are just as devastated to hear what’s going on with our military families.”

You can find for detailed information, and find your congressperson with one click at CMKAA website. Entering your ZIP Code will bring you to a page for your legislator, where you can easily send an e-mail asking him or her to attend Tuesday’s briefing on the Caring for Military Kids with Autism Act, and to support H.R. 2288.

I took it one step better and called my Congressperson’s office. I asked if anyone from his office would be attending the briefing, and was put right through to the staffer who handles veteran and military issues. The briefing was news to him but was happy for me to email him information. It took me about four minutes. And now, even though my laundry is piled to the ceiling, we’re having leftovers for dinner, and the kitchen floor is sticky, I totally get to spend the rest of my day feeling like I did something.

More on Babble:
The top 25 autism spectrum blogs
My son has autism — should I get pregnant again?
Babble’s autism spectrum disorders guide


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