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This was originally titled Genetic Discrimination, and is largely about that topic, however as I was writing I found myself inspired to move in a different direction, hence the change in name.

We are moving to Colorado in a little over 3 weeks for my husband to take a fellowship position.  Of course with Elijah’s situation one of the first things I did was review our insurance coverage.  I was extremely dismayed to discover that our insurance will not cover any of his therapies.  The insurance excludes therapies for everything except acute injuries from which there is a chance of recovery and therapy for individuals with Autism Spectrum Disorders, including PDD-NOS.  You might be surprised that Autism isn’t excluded, but through massive advocacy efforts a law was passed in Colorado that insurance providers were not allowed to exclude therapies for ASD.

This is where we run into trouble.  Fragile X is an autism-related disorder.  Somewhere between 30-50% (depending on which source you read) of boys with Fragile X are diagnosed on the spectrum.  Even those who aren’t autistic exhibit many of the same behaviors.  Elijah is an excellent example of this.  He forms extremely close caregiver relationships and can maintain some joint-attention tasks with adults (btw, for those of you who didn’t know, joint attention is a BIG BIG DEAL).  However he doesn’t form peer relationships at all.  Seriously, he’s been with the same kids for a year now and even when they say hi to him or call his name he won’t even so much as look in their direction.  It’s heartbreaking to watch.

He also has several self-stimulatory behaviors including spinning plates on surfaces and pushing the same button over and over repeatedly on a toy until you want to throw the toy through the window simply so you never ever ever have to hear the noise made by that button again.  He has also begun several self-harming behaviors including biting himself, smacking himself and head banging.  If watching him ignore his peers was heartbreaking I can’t even begin to describe the terror and horror that moves through you as you try to keep your precious child from harming himself.

He also has pervasive developmental delays.  In everything except Gross Motor he is currently testing at or below 12 months.  Gross Motor he has made it up to 18 months.  Physical therapy was his first therapy and the one he had the most frequently originally and it shows.  However the point remains, there are global delays including significant speech and communication delays.

Before genetic testing Elijah would have likely received a diagnosis of PDD-NOS.  (note: This diagnosis is actually removed from the DSM-V and is rolled in with the new broader definitions of Autism Spectrum Disorder which went into effect on May 17,2012.)    Elijah has the same symptoms, behaviors and therapy needs as many children with ASD and he actually is being tested upon our arrival in Colorado, and yet I’m left wondering why he should have to be.  With the same needs, why is the insurance allowed to discriminate because the cause is genetic instead of “unknown”?  It’s an employer based insurance so state law doesn’t matter in this case, but federal law does apply and the Genetic Information Nondiscrimination Act of 2008 (which took THIRTEEN years to pass!!) prohibits discrimination in health coverage and employment based upon genetic information.

The current recommendation is that children with unexplained mental impairment or developmental delays receive genetic testing, particularly if there are other incidences in the family history.  However, if insurance companies provide therapy coverage for the people with these delays that are of unknown origin, but which can be labelled as some for of autism but deny them for those of known genetic origin, why on earth would anybody agree to the testing?  This is the exact situation that the Genetic Information Nondiscrimination Act was meant to prevent!

I’m not a lawyer and goodness knows the text of the bill itself is just as convoluted and weighted down with definitions and caveats as one would expect of any piece of legislation passed in this country, but I strongly question the legality of coverage that is allowed as necessary for one group being denied on the basis of genetic information for another group.  Perhaps it obeys the letter of the law but it certainly falls short of the spirit.

I applaud the efforts of the autism community to raise awareness of this significant issue and the passing of laws in several states that prohibit insurance companies from denying coverage are a major victory.  The impact on families of developmental disorders including ASD is tremendous and I can tell you from personal experience that early intervention in Elijah’s case has made a tremendous difference.  He began therapies long before we knew the root cause of his problems.  His longest running, most consistent therapy has been physical therapy and this is undeniably the area he is strongest in.  You’ll notice I mentioned “most consistent” in there…we’ve already had several battles with insurance companies surrounding these issues and I truly look forward to the day when families who find themselves facing the sometimes overwhelming prospect of reframing their entire existence don’t have to add the stress of arguing with insurance onto the pile.

So for those of us whose children are not on the spectrum, or who just haven’t been evaluated because we don’t want to add one more label to weigh our child down with, we need to look at the struggles and victories of the autism community as an example, but we need to take it one further.  We shouldn’t have to advocate for one individual illness to receive coverage whilst the others get left behind.  Why should my friend whose child does not have a diagnosis of any sort, but has similar problems be any more or less eligible for services?  There is power in numbers and if we all figure out how to work together for the good of the entire special needs community; if every parent, grand-parent, aunt, uncle and sibling of someone who had grown up with these difficulties; even broader, if every person who has ever had to fight with their insurance company for a therapy necessary for themselves or a loved one….if we all joined together for common cause imagine the power to create change.  Just imagine.

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