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Autism Awareness Month and Month of the Military Child

This blog post is by Rachel Kenyon. You can learn more about Rachel and her family by checking out her blog StimCity.

April is not only Autism Awareness Month, it’s the Month of the Military Child.  As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.  I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing. 

For insurance, military families rely on TRICARE, the healthcare program managed by the Department of Defense (DoD).  A while back, military parents filed a Freedom of Information Act (FOIA) request for TRICARE to release its data regarding autism. We learned that autism affects approximately 23,000 military children, or a rate of 1:88.

But the TRICARE data reflected only children of active duty service members. Children who were diagnosed outside of TRICARE and families who had yet to successfully navigate the TRICARE system were not included.  I am often asked why the rate of autism is higher in the military. It is not necessarily higher, but perhaps more accurate as the military can reasonably be seen as a cross-section of Americans from every race, ethnic and socio-economic background, all tracked by a single insurance company.  A request for updated numbers has been made, but TRICARE has yet to release them publicly.

TRICARE provides autism treatment through a separate program called the Extended Care Health Option (ECHO) which is available only to active duty families. Enrollment in ECHO is secondary to mandatory application to the Exceptional Family Member Program (EFMP).  EFMP is branch-specific and was designed to provide comprehensive support to military families with special needs.

In theory, EFMP designates where a military family can be stationed in accordance with existing appropriate support services for the family member with disability. In reality, EFMP carries a stigma of limiting career advancement, so some simply do not enroll. In essence, EFMP has been transformed into a gatekeeper to medical care, rather than a “military community resource.” 

Aside from all that hot mess, getting a diagnosis to begin with can take several months to years. Military families who finally hear the words “your child has autism” often stumble out of the doctor’s office without information on how to access treatment. Because EFMPs differ for every branch and from one duty station to the next, there is no guarantee that a family will find their way into ECHO. If stationed where services are not available, families can request a Permanent Change of Station (PCS) and hope for the best.  Active duty National Guard members and Reservists who live outside of Military Treatment Facilities (MTFs) have less chance that their chains of command even know about EFMP and ECHO. If you haven’t noticed by now, the hoops our families are asked to jump through after receiving a diagnosis of autism are now on fire.

As a federal program, TRICARE is exempt from autism insurance reform laws requiring ABA coverage that have been enacted in 29 states. The DoD and TRICARE continue to classify ABA as “special education” in order to segregate treatment outside of basic care.  Yet, TRICARE ECHO’s autism “CHECKLIST FOR PARENTS” states that, to become eligible, the family’s medical provider must “submit verification and date of a diagnosis of Autistic Disorder….”  It goes on to explain which medical doctors can diagnose autism. So TRICARE refuses to classify ABA as “medically necessary,” but requires a medical doctor’s prescription to provide the benefit.  This is where the hoops we jump through become completely engulfed in flames.

ECHO benefits for active duty members have an arbitrary dollar cap of $36,000 per year that amounts to about 10 hours per week of ABA, less than half of the 25 – 40 hours recommended by The American Academy of Pediatrics, the National Academy of Sciences, and the Navy and Army Surgeons General. That dollar cap applies to all services under ECHO, not just ABA. So for every dollar spent on respite care or durable medical equipment, a dollar of ABA is taken away. As many of you well know, you’re pretty lucky if your child only has autism and you don’t mind caring for him or her 24/7 without ever taking a break.

Retirees are not eligible to receive ECHO benefits. A military member who has reached 20 years of service loses autism treatments for their dependent if they retire.  Many service members remain in the military after 20 years for the sole purpose of retaining ECHO coverage for autism. That means multiple deployments, PCS moves and continued battle on all fronts to keep whatever autism services they can. Wounded Warriors who are forced to medically retire are stripped of ECHO benefits.  Congratulations, you have one less limb to get around on so here’s a neat Thank You: We’re taking away your child’s autism therapies.

Cycling deployments and moving every two or three years is a challenge for any military family. But for the family that serves with autism, it is devastating on a whole new level.  The management of autism depends upon two main ingredients that simply do not jive with military life: a stable environment and routine.  Imagine this scenario:  the spouse who serves is state-side, the family has secured appropriate medical therapies and fought for an Individualized Education Plan (IEP) that works for the child.  Just as the family starts to see a glimmer of success, the service member receives new orders and everyone is uprooted to a new location. The child with autism regresses while mom and dad battle it out with a new school system, new TRICARE providers and are wait-listed for state-funded supports. Some couples actually choose to separate so that the spouse can retain the services they have fought for in one location, while the service member moves along to a new duty station.

Our military families are proud to serve; how else could America rely on an all-volunteer force?  I know there are dedicated professionals within the military system who do their very best to provide our families with what is available. I applaud each and every one of them because they are the glue holding those individual families together. But the system itself is beyond flawed when success is the exception and not the standard, and when recommended care is not available because of cost limits. Every military family with autism deserves the highest level of care recognized by the medical community. If just one military family is denied the medically prescribed autism treatments their child needs, we have failed entirely as a nation.

The Caring for Military Kids with Autism Act (HR.2288) fixes all of these complications by simply placing ABA as medically necessary into basic TRICARE coverage. No prerequisite application to EFMP. No dollar cap on care. No families split apart to keep services.  Coverage will not disappear when a service member retires after 20 years or becomes a medically retired Wounded Warrior.

Problem solved.

To kick off the start of April as Autism Awareness Month and the Month of the Military Child, Autism Speaks is hosting a special event in honor of military families affected by Autism on Saturday, March 31st from 8:45 am – 11 am aboard the Intrepid Sea, Air and Space Complex. The event will feature fun, kid-friendly activities, museum tours, a resource fair and program hosted by ABC News Correspondent Bob Woodfruff.

Space is limited and registration is required to attend this event. Click here to register: http://Events.AutismSpeaks.org/MilitaryFamilies.