Who’s Afraid Of The Big Bad…

TRICARE? I’m not.

But it seems that others are.  Why shouldn’t people be afraid of TRICARE?  They are in a world of their own that seems to answer to a set of rules that only TRICARE knows.  Of course TRICARE knows the rules; they made them up.

So yes, people are afraid of TRICARE, and it appears to me that a Federal judge is afraid of TRICARE too.

First, I need to clear up any misconceptions about what I mean by being “afraid.”  I don’t mean shaking in your boots, scared of the shadows in the night fear.  I’m referring to an uncertain environment.

July 2012, a Federal judge ruled in favor of a class action lawsuit brought forward by Kenneth Berge.  Mr. Berge, along with other military families (both active duty and retired) fought for three years to provide coverage of ABA or Applied Behavior Analysis as a medical treatment for their children who are on the autism spectrum. In his ruling, the judge stated that TRICARE’s coverage of ABA was “arbitrary and capricious and not in accordance with the law” and directed TRICARE to cover ABA as a medical benefit.  A month later, TRICARE changed their policy in regards to ABA treatment but in a way that very few children have been able to access the new program.  In what I feel is the most appalling part of this policy change, TRICARE terminated ABA for children without an autism diagnosis.  This population included children with Down syndrome, and cerebral palsy needing behavior health services.  Some of these children had been receiving limited coverage of ABA under the ECHO program for well over a decade. To this day, TRICARE has not provided any public explanation about it sudden termination of care.

I have seen some ugly things happen in my life, but the TRICARE response to the court case was appalling.  I don’t even think appalling is enough of a word to completely describe how I felt that day.  Remember, I’m working on updating TRICARE policy as well.  While I was wading through my emotions for those families with autistic children, I was worried about the families that I said I would help.  Now here we are, a year later, and the judge did an about-face and said he erred in his original ruling.  What??? This judge said that instead of ordering TRICARE to change its policy, he should have remanded it back to TRICARE for further consideration.  Hmmm… the judge is now referring the case back to TRICARE to reconsider their policy after they have vehemently denied coverage of ABA for special needs children for years.  Who or what is this Federal judge afraid of?  Who knows…but it sure seems weird to me that TRICARE has so much influence and given so much deference.

The 2012 court ruling was such a strange win.  And watching the politics was frightening.  However, I still was not scared.  I felt invigorated by this.  I wanted to work more with groups like Autism Speaks and the Military Special Needs Network to ensure that this ugly behavior would never happen again.  I was learning from all this insanity and nastiness.  I was suiting up for the battle of my life with some of the best groups suiting up as well; standing beside each other as we fought for our children.

Last year, TRICARE for Kids passed in the House of Representatives.  Yes, the legislation I was working on passed!  Also, out of the House came legislation making ABA treatment a permanent medical benefit for autism.  The Senate added in all other developmental disabilities with the autism legislation. Very exciting!  I can’t believe legislation I was working on and supporting was passing in both the House and the Senate.

However, out of committee came changed legislation.  It was incredibly disappointing and I can’t lie…I was scared that all things were lost.  The TRICARE for Kids bill lost the working group that would provide updates to DoD and autism bill that would have provided full ABA coverage was reduced to a one year pilot program for autism only.  These provisions were part of the the National Defense Authorization Act that President Obama signed in January 2013.

Why was TRICARE winning?  Or, why was TRICARE appearing to win?  I get politics, but this seemed to be more than that.  This felt like another “let’s not make the big, bad TRICARE mad” moment.  The tentacles of TRICARE had intervened again.  Where was the will of Congress?  Where was the separation of government?   How could a branch of government that possesses the ability to hold TRICARE accountable give full discretion to TRICARE to design and implement any changes according to their will.

TRICARE has broken faith with military families time and time again …and I’m mad.  I’m mad that my son needed an orthotic device to re-shape his skull and it was denied by TRICARE.  A FDA approved, non-invasive device, that would actually save money to the taxpayers, was denied.

You know what else I’m mad about?  The disconnect from Congress and the non-military community is beyond upsetting.  When people make comments, “Well, you do get free healthcare.”  Really, I do?  Do you know the strings that are attached with that healthcare?  Do you even understand how frustrating it is to work with a system that is fraught with bureaucracy?  It’s a system that has arbitrary rules that slow the care process instead of expedite it.  It’s a system based on Medicare which is great for adult care; not pediatrics. 

So, right there is the big issue with TRICARE.  It’s based on a system for adults and applied to children.  While that works for adults and children that don’t need any form of specialty care, it doesn’t work for children that need extra care.  It doesn’t work for long-term care for our children.

My son needed a cranial re-shaping helmet to correct his Plagiocephaly.  The helmets are non-invasive, and while seem initially expensive ($3,000-$5,000); they are far more cost-effective than the surgical option that our military treatment facility offered.  A surgery on my infant son would cost the taxpayer less money?  A surgery, would be less invasive?  Are there A LOT of risks involved with surgeries?  You bet there are!!!  How was that the ONLY available option for my child???

Let’s look at ABA treatment.  While initially ABA seems expensive, it seems to me that ignoring the healthcare needs of children on the spectrum and those that have other developmental delays will cost more.

And here’s TRICARE, denying the science behind ABA treatment and cranial helmets.  Saying that cost, and cosmetics are the problems.  Sure, that’s it.  Well then let’s stop these treatments.  I know my son was suffering from chronic ear infections, would have needed surgery, and potentially could have had a variety of developmental delays related to his Plagiocephaly.  I bet his surgery would have cost less than his helmet…oh no…it wouldn’t have.

ABA is considered by many researchers and clinicians to be the most effective evidence-based therapeutic approach demonstrated thus far for children with autism.  ABA brings improved outcomes for the individual child, family, and society as a whole.

Providing appropriate medical care for children saves money, it’s just that simple.   Putting this in the context of the military family care, it is simply the right thing to do.

So, now our military families are at a crossroads.  We can continue on the path we are on, or we can stand up to the big, bad wolf and not let our house get blown down.  I refuse to let my house be blown down; I’m not afraid. Who’s with me?

Well, It’s Not Sexy

There are different types of advocacy work in the military world.  We have those are advocating for our wounded warriors and their families.  We have advocates calling for better awareness with PTSD diagnosis, treatment, and suicide prevention.  There are advocates for the military spouse that fight for education to employment.  We even have the advocates that have been effective with policy change which also has a variety of subject matters.  Some of these subject matters are really sexy, like employment, education, PTSD, but some aren’t, like pediatric healthcare and special needs.

We, who choose the path of special needs, pediatric healthcare, or Exceptional Family Member Program (EFMP), have chosen the least sexy advocacy path of them all.  WOOHOO FOR US!!!!

What Do You Mean It’s Not Sexy?

I can tell you from firsthand experience that no one wants to hear how the military treatment facility did not provide adequate medical care to my child, or how we’re so bogged down with bureaucracy that it’s hard to navigate the system without losing your mind.  We are constantly reminded that we have “free” healthcare and should be thankful.  Oh and yelling at the doctors and medical staff; not sexy.  Well at least not for me since I get a little frothy at the mouth.

No one wants to know how that family who happens to have a child or children in the EFM Program is actually doing.  They aren’t doing well some days.  The family is facing a variety of issues to the severity of the child’s diagnosis, their overall health, getting needed therapies such as OT, PT, or ABA, to fighting for the child’s education, or fighting with insurance companies.

I only saw the tip of the iceberg for so long, until Ian.  I’m a special needs adult, so I understand how important it is to advocate for yourself.  And while I may have fought for my educational accommodations, I never had to fight with an insurance company for any healthcare coverage.  I never had to argue for therapies that were vital to my well-being.

I can’t believe what EFMP families go through.  I can’t believe how exhausting all of this fighting is.  I can’t believe how overwhelming it all is.

Never in my life have I cried such big, ugly tears like I have when my insurance denied coverage to a basic healthcare need of my son.  We are not a sexy group of people…or are we?

Today I read a story about Miss Iowa who was born missing a limb; part of her arm actually.   Her platform is advocating for special needs children and adults.   When a girl with autism or one that overcame cancer goes onto the Miss America Pageant, then everything changes.  All I can say is, “who cares if disability advocacy is sexy or not?”  Because it really doesn’t matter if we’re the cause de jour; we’re a group of people who will overcome obstacles the likes you’ve never seen nor encountered.

Now, that’s a little sexy.

A New Beginning

I have started at least three blogs in the last few years.  I think part of it is, that they are difficult to keep up with, and I forget.  It’s that simple.  But something in me has changed.  I have found a focus that I never knew possible for my ADHD self and so I went and got advice from some of the most well respected people I know.

My friend Claire said to start  a professional blog.  I thought at first she was crazy, but then I realized…she’s right.

If I’m going to gather information, share it with others, and advocate for pediatric healthcare updates in TRICARE, then I needed an avenue to do all of that.

My name is Susan and I’m a military spouse and mom taking the fight to TRICARE.  My son needed a cranial re-shaping helmet and it wasn’t covered by our insurance.  These helmets were covered over a decade ago, and they are covered by Medicaid.  I don’t want a handout, I just want preventative healthcare for my son.  I’m only getting started, so please share your story, share your worries, and we’ll do great things together.