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Where is the ‘Care’ in ‘Tricare?’

Update: Tricare changed their mind about this policy and instead is only putting it on retirees. Read more here.

Every military beneficiary, at one time or another, has had a complaint with Tricare. But, on the whole, Tricare is  far from the worst healthcare providers out there. If you only have common-place ailments, you could assume they have excellent coverage across the board.

I am here to tell you that is simply not the case.

Military families who have a child on the autism spectrum are currently rising to challenge Tricare on their new Tricare autism coverage policy for the way their children are able to access Applied Behavioral Analysis (ABA) therapy, set to go into effect July 25.

You can read all the details about the new policy, how it compares to the old one and why Tricare says they made the changes in Amy Bushatz’s Military.com story.

As a military spouse and parent of a child with autism I am one of those who are furious. The new policy limits of two year of therapy duration and standardized testing that is not fit for the purpose of measuring progress will directly affect my son.

He was diagnosed with moderate –severe autism at age two. He is now six and thriving thanks, in part, to the therapy known as “Applied Behavior Analysis” or “ABA” that Tricare is trying to limit in their new policy.

He has received over three years of ABA already, although never at prescribed levels. He is so high functioning that he might not qualify for additional therapy, according to the tests Tricare are requiring, and he is already over his “allotment” of time.

And even though he is currently thriving in a mainstream school setting without any form of dedicated aide and is social, happy and engaged with his world, he still has autism. He still struggles with reading social cues, he still struggles with attention and impulse control and he still has limited safety awareness.

He still benefits greatly from his ABA therapy and would continue to.

Although my son has made rapid progress in ABA after three years, other children do not. There is a saying in the autism community — “if you’ve met one child with autism, you’ve met one child with autism.” Basically, autism is a condition that varies enormously from child to child and an individualized approach is vital.

As families we should all be outraged. If Tricare can limit proven and prescribed medical treatments and therapies based on cost for one condition, what stops them from doing it for others? Why is Tricare limiting the very therapy that is so well-studied and researched to improve the outcome for children with autism? We wouldn’t dream of limiting medications or therapies for other chronic health conditions, so why is it OK to target one particular condition, that right now affects 1-in-50 school-aged children in the United States and 23,000 military kids?

We are all, as military families, fully aware of our current budget problems in the United States. We should be trying to cut costs. However, for a healthcare system that covers nicotine gum and Viagra, and a DoD that spends $34M on a base in Afghanistan that will never be used, surely there is other fat to be trimmed than the therapy of military children with autism? Wouldn’t the thousands of dollars of spending for the new testing requirements included in Tricare’s new ABA policy be better used for actual therapy that can improve a child’s independence?

Military families don’t have access to the benefits of autism reform legislation from state to state, because Tricare is a federal provision. And the waitlist for the Medicaid waiver programs that cover this therapy are so long most military families never get to the top of the list before they have to PCS.

Since it is PCS season right now thousands of families are bidding farewell to friends and schools and, in the case of those with children with autism, therapists and doctors. Tricare is imposing these changes during the most stressful time of the year.

As of today, Tricare, less than two weeks before the implementation of these new policies, has still not informed families or therapy providers of the details of these policy changes. Last week a post appeared on the Tricare website that contained some of the information, but not all, and not some of the vital points that are causing so much concern to families.

Military grassroots organizations have been ahead of the curve, and far ahead of Tricare, issuing clarifications to families so they can contact their Congressional representatives to challenge these arbitrary and capricious policy changes that only serve to restrict access to appropriate medical care for their children.

Tricare’s customer service representatives still have no answers for families about the policies. Many aren’t even aware of changes. Even Exceptional Family Member Program (EFMP) contacts at the bases are in the dark and unable to advise the families they serve. Tricare have even been challenged on their policies by Senators Kristen Gillibrand, D-N.Y., and Sen. Patty Murray, D-Wash., and so far we haven’t heard any response.

The whole situation is a debacle. We have a policy that was clearly designed without any input from providers or patients. Tricare is unable or unwilling to provide answers to reasonable questions and concerns from parents. Children are set to lose access to a therapy that has the potential to provide life-changing improvements for those affected, whose parents serve this great nation.

It’s time for DoD to really put the ‘care’ back in Tricare.

Sarah Stockwell, PhD is a former chemical researcher turned stay-at-home parent. She lives in Colorado Springs with her Air Force husband Jeff and their son Tom. Sarah volunteers with American Military Families Autism Support, has written for the Autism File Magazine and Age of Autism and in her 10 minutes of spare time a week enjoys glass art.

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