Anger to Advocacy: Military Kiddos with Autism

Autism-600x600I’m sure you haven’t heard anything about the drastic policy change being put into affect in a couple weeks for military children with Autism. I’m lucky that I followed a link through AutismSpeaks that opened my eyes.

I am a mother of a military child with Autism and I’m angry.

These policy changes have been so hastily done that Tricare representatives can’t even comment on them. EFMP coordinators don’t have explanations to give their families. Providers don’t even know about the blow that is coming.

Every military child faces incredible obstacles. Their parents deploy. Their schools change. Their homes change. For children on the spectrum each one of these is life-shattering. Applied Behavioral Analysis (ABA) therapy is one of our strongest means of combating these very transitions.

This policy limits ABA therapy to two years. Autism doesn’t have a time limit. My son is three, currently undergoing ABA therapy, and in two years he enters kindergarten. Literally, every moment of therapy, every focus of our day is getting him ready for that event. I have no idea how he will react. No idea how he will do. But this policy is stripping him of every therapist rooting for him, of every stronghold he has, right when he will need it most.

That isn’t okay with me.

This policy uses tests that are meant solely for the purpose of diagnosis and setting a baseline to decide every 6 months if the cost is “worth it”. He must “show progression” on paper every six months. My son has never successfully completed one of these tests. No therapist or evaluator has been able to get a result on paper that correlates with his mental and physical capacity. With this policy, he would be dropped from coverage. His therapy could end. Because my child – who is highly intelligent and capable – can’t conform to a standardized test.

Whoever wrote this policy cannot have any understanding of what children like my son are like.

That makes me beyond angry.

Nothing in this policy holds true to what military families have fought for and been promised. This destroys everything military advocates have worked to give these kids – these kids who have a drastically higher rate of Autism than in the civilian sector. This lifestyle forces these kids to undergo transitions that families in the civilian sector may never have to undergo. What does this ask of us as parents? To leave this life? To walk away from the military? If we can’t have services that allow our kids to survive these transitions and times of separation, is it right for us to be here?

We are a family that serves,t hat gives for a nation. My child deserves better, these children deserve better.

I’m tired. It took months to have our son approved for these services. Months of paperwork and red tape and lost documentation and resending documentation and phone calls and meetings and faxes and patience and frustration and fighting. He needs this therapy. How much more do we have to fight? How much more do we have to bend before we break?

Time is precious to these children. Time matters. This policy says we can apply for “waivers” for these changes. Waivers mean fights and battles and time.

Time these children do not have.

Six months – or (God-forbid) a year, two years – can make the difference as to whether or not my son is expelled from school because he can’t stop biting other kids. Because there is no therapy to help me teach him how to appropriately seek sensation – because some policy writer says two years of therapy is sufficient for my child. Time means the difference between a beautiful blonde-haired, grey-eyed little boy being pushed to the bottom of the list, having him written off as “stupid” because he won’t verbalize the answer he absolutely knows in his head. TIME is the difference between my child’s self-esteem, self-respect, self-love.

Time is everything. I’m angry. I’m tired. I’m beaten down.

My child doesn’t deserve for someone, somewhere, to take away his chance. Doesn’t deserve for someone to say that on paper he isn’t worth the cost. My husband put his life on the line for this nation, for this healthcare, for these kids. These are the children who do unbelievable things if they are given the strongest chance.

We cannot fail these kids. We cannot fail them. We owe them better.

 

*These policies are set to go into affect July 25th, 2013. There are sample letters that can be edited, printed to mail, or copied to email on American Military Family Autism Support.

 

There has been an update to the policies after this post was published, please visit: http://wtkr.com/2013/07/18/pentagon-plans-announcement-about-tricares-changes-to-autism-therapy-coverage-after-outrage/

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Comments

  1. I am SO THANKFUL that enough pressure was put on Tricare to NOT implement these changes to active-duty families. However, they currently WILL go into effect for retirees and non-active duty families. We need to continue to raise awareness and advocate for so many military families who will still be effected.

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