Tuesday, December 13, 2011

Parity?....WHAT PARITY???

I've been really struggling lately that my son, and other kids with Autism, are written out of insurance benefits in many companies.  Our insurance company, United Healthcare (which is dictated by my husband's employer), has ASD called out and excluded BY NAME from all therapy benefits except for Psych "counseling" services.

Nathan does not need counseling.  The only reason the rest of my family would might stem from our frustrations of not being able to provide APPROPRIATE treatments that will actually help my son gain a way of communicating and coordinate his sensory system.  Treatments which my husband's employer refuses to cover. 

"Speech therapy and occupational therapy not covered in cases of Autism Spectrum Disorders", says the Almighty EOB.

UHC claims Autism is a "complex developmental disorder" that falls under the auspices of their Behavioral Healthcare division...of course, they leave out the basis of that disorder: a MEDICAL condition.  They accept that several MEDICAL CONDITIONS can cause Autism:  Rubella, Encephalitis, Tuberous Sclerosis, Fragile X, and PKU.  It's unknown as to why vaccines are left off of that list, since even the nation's vaccine court has conceded that there is, in fact, at least one case in which vaccines caused encephalitis...which causes Autism.  Interesting how the linkage only goes so far. 

UHC is quick to suggest pharmaceuticals in their list of plausible treatments, while immediately using disclaimers of "not enough evidence", "unproven", "flawed" while describing biomedical interventions, while also stating that "parents report improvement".   

Then again, UHC also claims they know what Autism looks like in children:
"They do not actively cuddle or hug but rather they passively accept physical contact or they shy away from it. They may become rigid or flaccid when they are held, cry when picked up, and show little interest in human contact. Such a child does not lift his/her arms in anticipation of being picked up. The child may appear to have formed no attachment to his/her parents, and does not learn typical childhood games, such as 'peek-a-boo.'"(from the UHC website).
HUH???  I don't know what 1960's psych manual they pulled that one out of!

The Mental Health Parity Act expanded by Pres. Obama in 2010 says this:
"The new law requires that any group health plan that includes mental health and substance use disorder benefits along with standard medical and surgical coverage must treat them equally in terms of out-of-pocket costs, benefit limits and practices such as prior authorization and utilization review.  These practices must be based on the same level of scientific evidence used by the insurer for medical and surgical benefits." (from http://www.hhs.gov/news/press/2010pres/01/20100129a.html)
One main tenet of the Act altered by Obama was that this one extends protection to benefits for treatment for substance abuse.  SUBSTANCE ABUSE.  My child did NOTHING wrong.  My child abused NOTHING.  If anything, our son has been the unwilling victim of apathetic, ignorant, willfully unknowledgable mainstream doctors.

On the same website, Secretary of HHS Kathleen Sebelius explains the further reason for this expansion:
“The rules we are issuing today will, for the first time, help assure that those diagnosed with these debilitating and sometimes life-threatening disorders will not suffer needless or arbitrary limits on their care,” said Secretary Sebelius.  “I applaud the long-standing and bipartisan effort that made these important new protections possible.”
Yes:  Autism can be debilitating.  My son is almost 5 years old and gets frustrated because he cannot communicate with us.  It is NOT behavioral.  He WANTS to talk.  He is physically unable.  He has to be on a special diet because of his allergy to 40 different foods.  He has to take a list of supplements to heal his gut and control the systemic inflammation that has resulted.  This story is told over and over again in countless families I know in the community I am a part of.  If the ensuing chemical imbalances and nutritional deficiencies are left untreated, epilepsy can result (as it does in 20% of the population):  very much a life-threatening condition!

So let's throw the argument of whether Autism is mentally or medically based out the window for now.  Let's go along with what UHC says: it requires mental treatment.  In that case, let's place my son in the only evidence-based, research-proven behavioral treatment that has been recommended by the Surgeon General...let's get him some ABA.

Oh.  You don't cover that either!  Curiouser and curiouser!

In addition, to say that my son would not benefit from Speech-Language Therapy or Occupational Therapy is a flat-out LIE.  We saw progress when my husband's employer "accidentally" included these services on our benefits page, causing us to quickly enroll Nathan in Speech and OT at a clinic.  His sensory issues began modest improvements during the 4 mos he was there, and he was able to focus on listening thanks to OT.  Speech was training him on his PECS book.  He was making slow headway.  Then therapy was quickly yanked out from under us when the "mistake" was discovered. 

The school district has done little for us.  Their only concern has been making him sit, getting him to pay attention, and following a schedule...oh-- **laugh**--...and "quiet hands".  All things that are not for his benefit and well-being, but for a future teacher's comfort level.  They are preparing him to sit in a special ed classroom, to be quiet, and to passively do mundane art projects and tasks.  Almost 3 years have passed since we began "therapy" with the school district...he still does not have a solid way to communicate with others outside the family. 

So, with all of the above in mind, I ask this and leave it open to you all to answer: 
Where is the "parity" for the Autism community??

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