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Situation for Military Kids with Autism Is Shameful

By joslyngray |

(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


More on Babble

About joslyngray

joslyngray

joslyngray

Joslyn Gray is the mother of four children with a variety of challenges ranging from allergies to ADHD to Asperger Syndrome. She writes candidly and comedically about this and her generally hectic life on her light-hearted personal blog, stark. raving. mad. mommy.. Read bio and latest posts → Read joslyngray's latest posts →

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16 thoughts on “Situation for Military Kids with Autism Is Shameful

  1. Julie says:

    It’s a shame. I’m married to a Major, soon to be Lt Col, and our son, who is not autistic but has other medical issues, is racking up bills even with our Tricare insurance–I cannot imagine how the young enlisted force manages.

    I would like to add that if you’re covered by Tricare don’t plan to pick up your prescriptions at Walgreens… they dropped Tricare on Jan. 1, 2012. Nice way to support your vets Walgreens.

  2. Al says:

    Those who live in Northwest Florida and have a child on the spectrum should take a look at the Emerald Coast Autism Center.

  3. Karen D. says:

    Thank you for building public awareness of this issue and raising up the needs of these brave military families. I am a Marine Corps wife and mother of a son with autism. Providing access to effective medical care results in improved health outcomes to the entire family and are cost effective to society as a whole. Family care is critical to mission readiness, and lack of treatment available through public systems and TRICARE increases the burdens on the military family. Our ethical obligation to provide for the health care needs of our military families compels us to correct these deficiencies. Policy changes are urgently needed to recognize the medical necessity of behavioral health treatments like ABA therapy to help our children reach their full potential. Military families who deploy repeatedly to combat and serve this great nation with honor and integrity deserve nothing less. HR 2288 Caring for Military Kids with Autism Act is simply the right thing to do. Thank you again.
    Semper Fi.

  4. Dawn Ford says:

    I am the mother of three amazing children, 12, 5, and 3. When our son (now 5) was diagnosed with autism at age 3 1/2, my husband was deployed with his National Guard unit in Iraq and Kuwait. I remember telling him about the diagnosis over the phone as well. I made many phone calls in the months before my husband’s return from deployment because we knew we would be paying monthly for Tricare Reserve Select and transitioning from Tricare Standard. I was assured by representatives at Tricare that my son would continue to be covered for ABA, however, soon after my husband returned and we began paying for TRS, our son’s ABA claims were denied, despite the fact that we (and our provider) still had an authorized referral from Tricare. We were left with no ABA coverage and a $3,800.00 bill as a result. Not only was our son’s 12 hour per week therapy abruptly ended, but our reunited family was thrown into a tailspin of trying to regroup. Behaviorally, we noticed a tremendous regression in our son, which made our transition/adjustment time really difficult. Additionally, the $3,800.00 in bills denied by Tricare felt like a terrible blow to our family, particularly after just going through a 12 month deployment.

  5. SJP says:

    I just followed the links and wrote an email to my congressman – he’s not on the list of sponsors. Thanks for sharing. We are not in the military but I agree the situation is shameful and this needs to pass.

  6. J.H. says:

    My husband was recently medically retired as 90% permanently disabled. He has a traumatic brain injury, severe PTSD and a laundry list of physical injuries. Due to his physical and psychological injuries he is no longer capable of working, I am his caregiver AND my son’s caregiver – he has ASD. I am constantly with them both. We don’t have the luxury of using a different insurance for therapies and since we have to solely rely on TRICARE for all my son’s medical issues, he just goes without a lot of things that would benefit him. My husband’s problems and my son’s issues somewhat exacerbate each other– imagine someone who needs quiet due to PTSD and someone who can’t control their volume due to ASD– therapy and respite care would really help our overall quality of life. This blog post is our family situation EXACTLY. As a mom with an ASD child I’m sure you understand how difficult it is for me to even find time and energy to read this post let alone be an advocate! It makes me sad but it’s true. I want to thank you personally for giving us a voice.

  7. Jodi says:

    And military personnel have a right to fear EFMP. I’m also married to a Major, who is about to be a Lt Col (like Julie :) ). My son has autism. My husband flies an airplane that’s at limited number of bases. My husband has to take non-flying jobs to take care of our son. We have moved 4 times in just as many years. Each move, my son loses 9-12 months, before he is back to where he started from. He is 8 years old, and he can’t read and can’t write. And we just moved from a fantastic school in OH to a mediocre (AT BEST) school district in FL, whose idea of mainstreaming is to hide the special education kids in a closet, so that the typical teachers don’t have to deal with them. The first opportunity, my son was moved to a private school. And what’s the military answer to this… Their reaction is defensiveness. If you bring up shortcomings in the system, they blame you, tell you to shut up and color, and tell you to be patient. And meanwhile, your child is suffering from your spouse’s upward mobility (and constant moving that’s common with a Major-Lt Col) or your spouse is suffering because he can’t go to the jobs he needs to be upwardly mobile.

    Sadly there are also those that think we are a bunch of over-entitled whiners, who financially benefit from our children on the spectrum. I have yet to see one red cent from the government for my child’s autism, even though I know for a fact that the weapons range we lived on caused his mental retardation due to exposure to lead. I don’t have SSI, my kid isn’t on ritalin, and the only benefit to having a child on the spectrum is the fact that my little boy is the best little kid a parent could ask for. But if people think that having a child with autism is a one-way ticket to government aid, I have swamp land in the Sahara I would love to show you.

  8. Keri Peko says:

    Thank you for posting this. My family is one of the many this blog focuses on. My daughter is one of the beautiful faces that pops up on the ACT Today for Military Families PSA. It means so much for other moms to recognize our struggle and support us throughout. I am hoping to travel to DC on the 31st to sit in Committee and explain to the Staffers the difficulties we encounter. I think I may just print your blog and shove it in their faces! I agree – WHAT THE HELL?

  9. julieminer says:

    I couldn’t agree more and hope that the hearing on the 31st wakes up legislators and shakes up their notions of how our nation’s armed forces deserved to be treated. Great post, Joslyn!!

  10. Dana says:

    The Social Security Administration (you know, the one that may not be around when we retire?) may be able to help your family now. If anyone, child or adult, is considered disabled, Medicaid services could be awarded at the very least. At most, your family could receive both Medicaid and a monthly check to help cover costs that TriCare and Medicaid will not cover. Most cases are denied upon application. Immediately request a review, as many times the review determines that disability benefits are needed. It is called SSI, or Supplemental Security Income. It has helped tremendously with our family. We racked up quite a bit in medical bills, and because of the combination of the two, paid VERY little. Take advantage of the services available to you.

  11. Kris says:

    Unfortunately, this does not just apply to Autism with Tricare and ECHO. Our youngest daughter was born with a rare birth defect that has resulted in 7 surgeries to date, and she has a feeding tube for 100% of her calories/nutrition. We have been on the waiting list for almost TWO YEARS to get Respite care. We were also out over 25k her first year of life alone in medical expenses not covered by Tricare. My husband is a LT in the Navy who is currently deployed and I have gotten zero help from the military. I have a 3 year old and almost two year old and have never once been able to leave my little one because she can’t be left with out having a nurse. She had a full time nurse in our last duty station that had been approved through Feb. 29 of this year. When we moved to the East Coast Tricare up and denied something they had already approved, stating it was a new region. Tricare is a CLUSTER. Our troops and their families deserve better than this.

  12. Amy says:

    My uncle got out of the army after 27 years because he was going to be stationed overseas and there was no guarantee that my cousin would get the therapy that he need (only speech at the time). The army is good at having services on paper but reality is often different. It’s good thing he did get out since my cousin has needed more than just speech therapy.

  13. michelle says:

    WE NEED SOCIALIZED MEDICINE. No child in an advanced society, military or not, should ever have to go without essential health services, or jump through ridiculous hoops to get them. Ever.

  14. Belle Burgess says:

    FYI on Walgreens, it was Tricare that dropped Walgreens, not Walgreens dropping Tricare. Walgreens had a petition going for military to sign asking Tricare to continue the contract they had with Walgreens, obviously TRICARE rejected it.

  15. nicole says:

    Very shameful. Just one slight factual error, if you are transferred a new school district is required to provide the services immediately…they cannot wait. They have 30 days to convene to discuss and re-write the IEP but during those 30 days, they need to provide the services outlined in the existing IEP. If someone tells you otherwise, push back!

  16. Tracy Russell says:

    You have all of your facts straight. You sound knowledgable and articulate. Please replace Rachel Kenyon as the spokesperson for this issue. She rambles, has her facts wrong, is inarticulate, and seems to have very little energy. We need more umph in this fight!

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