Military Autism Families Fear Loss of Services Amidst Policy Changes

Therapist Anna Giorgianni works on fine motor skills with a military child with autism.
Therapist Anna Giorgianni works on fine motor skills with a military child with autism.

It’s the same fight, different year for many autism families across our country.  As TRICARE rolls out new policies the ABA and military autism communities are scrambling to figure out what it all means and unfortunately it doesn’t look good.  ABA is an autism behavior therapy that is currently one of the only treatments endorsed by the medical community to address maladaptive behaviors, help overcome deficits and delays, and provide autistic individuals the tools they need to communicate their wants and needs.  This therapy has been known to do everything from giving a nonverbal child words to reducing severe aggression.  It can reduce dangerous behaviors such as bolting and self-injury.  It can potty-train an 8 year who is still in diapers.  It can teach an autistic child how to feed and dress themselves.

Many autism families will attest that ABA therapy is value added.  Bonnie K. (autism parent) describes what a game changer ABA has been for her family: “ABA was a huge help for our family. My son went from combativeness and aggression to cooperative and able to attend school.”  Because of similar testimonies and clinical findings most healthcare and state services are moving in a direction that will get more families covered (thanks to the tireless lobbying efforts of Autism Speaks and other organizations 45 states have now signed on to autism insurance reform).  While most state and private insurers are moving towards more coverage for autism families, TRICARE is making it more difficult to access the autism services it already covers.  TRICARE requires more ABA provider credentialing than any other insurance, which is costly and time consuming for providers making TRICARE patients harder to serve.  Their new policy (which was released at the end of November and started implementation on January 1st of this year) mandates providers administer and submit a behavior inventory every year for services to continue. This is in addition to the re-authorizations that need a specialist referral and severity level to be submitted every six months that families are already burdened with acquiring.  Many families have already had reauthorizations rejected in the new year due to the short notice for the required behavior inventory.  Thus military kids are already losing services due to the new ill-planned policy changes.

And that’s not the worst of it.  The policy that most worries providers and families alike is the new requirement that already diagnosed kids will need to have diagnosing evaluations re-administered every two years to continue services.  The evaluations must be administered by an autism diagnosing specialist, many of whom have waitlists 12-24 months long for an initial evaluation.  And many of whom will not entertain the idea of taking up a valuable 2 hour evaluation slot for a child who already has a diagnosis when so many kids are awaiting initial diagnosis so they can start receiving services.  The new requirement that seems to be seeking a new diagnosis for a lifelong disorder has everyone pretty confused.  Military spouse Cassie J. voiced her frustration with the changes: “I’m just dumbfounded at re-diagnosing every two years. Are they supposed to outgrow autism?! The need for ABA may change, but the diagnosis itself will never change if they were initially correctly diagnosed by a qualified provider.” 

Despite military health care facilities’ continual pleas that they are undermanned and unable to carry out such testing, TRICARE has moved ahead with the new policy.  Military families are already facing waitlists every time they move, possible regression every time they move and nationwide provider shortages.  Provider and autism parent Kerri A. states, “As a parent, waitlists are already long. My children have been without services for 6 going on 7 months since we moved.”  Advocates point out with the new testing requirements access will only be further restricted.  While families wait to be retested many fear they will lose services during critical times.  Autism parent Kimberly G. cannot imagine what such a loss would mean for her son. “ABA has changed our lives. I went from having a non-verbal, angry, unresponsive child to a verbal, happy, connected child. We went from not being able to leave our home due to meltdowns and anxiety to being able to go grocery shopping and go to church. My child went from not interacting with peers to being a kid that loves being around others and asks to play with friends. He is thriving…Losing services would be detrimental to him right now because he is on such a good path. He loves his therapists and the change in him is remarkable.  We live in a small town with one ABA provider. They are overloaded as it is. Having to deal with re-testing and re-authorizations, especially as slow as TRICARE moves, would be a disaster for us.” 

This action on behalf of TRICARE and the DoD has families wondering if the government is intentionally trying to limit access to covered services.  This isn’t the first time TRICARE has slashed autism services and military families have paid the price.  In 2014, TRICARE planned to cut autism provider reimbursement rates in half. (http://thehill.com/policy/defense/220201-pentagon-to-cut-autism-healthcare-payments-in-half)  Many providers would have shut down, downsized or stopped taking Tricare clients leaving families with no option for services for their autistic children.  Due to the outcry from military families and the media attention, the Pentagon back-peddled and postponed rate reductions.  They later came out with a lesser rate reduction based on cost of living. (http://thehill.com/policy/defense/272749-pentagon-under-fire-for-proposed-cuts-to-autism-care)  These reductions hurt families in low cost of living areas the most as smaller providers collapsed under the red tape and lower rates.  Because of all of these changes and the surrounding uncertainty many military families’ services went on hold or disappeared.  The most recent NDAA (after many senators and organizations’ advocacy efforts) reversed these rate cuts, but for some providers it was too late and those areas are now without services altogether. Families and providers are hoping these newest ill-conceived policies will be re-evaluated as well.  They are calling their Senators and reaching out to the powers-at-be in hopes that their voices will be heard.  But how long will it take the DoD to realize how detrimental these changes will be for families?  And how many military autistic children (who already face a great deal of challenges) will go without critical services in the meantime?

Last names have been redacted to protect the identities of military families.

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