August 18, 2006


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"parents that have children that are autistic are exhausted and (financially) broke,"
~Bob Wright
grandfather of an affected child,
Co-Founder of Autism Speaks,
Chairman and CEO of NBC Universal
statement made on "Imus in the Morning," April 11, 2006

Amen!  This statement has been ringing in my ears all summer.

We are absolutely exhausted.  We have had a whirlwind summer filled with travel and treatment.  But autism is simply exhausting in everyway for everyone affected.  Mom and Dad are exhausted from research, paperwork, planning, running therapy drills at home, running to doctor appointments, removing toxins from the house, planning safe meals, dishing out medications and supplements, paying for it all and of course worrying.  Cameron is exhausted from his schedule, the biological process of recovering from illness and the frustration of not being able to get his body and mind to work together appropriately at all times.  Cameron's sister, Megan is also exhausted from the running around, worrying about her brother's well being and missing her parents undivided attention amidst it all.

I've been counting down the days of summer and telling myself that I'll gain a few hours back to catch up on my "to do" list once school starts.  However, I know that the few hours that I will gain back won't even begin to be enough time for all that I have on my plate.

Just as the other autism families we know, we too are broke.  Cameron has now been treated biomedically for a year (and attending therapy for three years).  When this journey began we felt confident that we would be able to afford anything he needed.  We felt fortunate that our financial status at the beginning of our journey allowed us to move full steam forward with Cameron's treatment.  We developed a treatment budget, which we soon doubled and tripled.  While we are still able to meet Cameron's needs, we have reached a point of having to scale back our other expenses and revising our financial and retirement plans we had laid out prior to treatment.  

This week Governor Pataki (NY) signed the Autism Health Insurance Parity Law.  This law does not allow health insurance companies to discriminate coverage based on an autism diagnosis and requires that any treatment covered for other diagnostic codes must also be covered for autism.  This law is a rarity at this time.  Only a few other states have similar legislation.  New York's law is temporary (3 years) and then an evaluation will be completed to see if the cost to insurance companies to provide this coverage is too much of a burden for the industry.  Today, most parents of autistic children are burdened with nearly 100% of the cost of biomedical treatment for autism.  Reimbursement from insurance companies is rare and usually occurs at out of network rates after being denied and appealed over and over again.  This means that many kids go untreated or under treated because the cost of treatment is overwhelming to families.  

More legislation is needed nationally and locally protecting families and children from the financial burden of providing treatment.  It is unfair for example that treatment for gastrointestinal issues (colitis, etc) to be denied for individuals with autism but approved for diseases such as Crohn's disease.  Why should a person with autism be expected to suffer the pain of GI disease or pay out of pocket for treatment while those without autism have coverage for the same treatment.  

One additional note about Parity Laws.  It seems that politicians always leave loopholes for themselves and those who line their pockets.  While we still fight for full legislation in our own state, our family is acutely aware that it would not help us today.  We learned this lesson already.  Our state provides protection from discrimination of coverage for speech therapy.  However,  the insurance plans offered to us from my husband's employer are labeled "self funded," which means his large employer funds its own insurance plans.  This is not unusual.  The converse would be a "group funded" plan.  These nuances in language apparently are not only confusing for subscribers but also employers.  It took a lot of back and forth between the insurance company and the executives in HR at my husband's employer's office before we found that our son's speech therapy could continue to be denied because while we have a "group insurance" the plan is "self funded" and thus exempt from state laws protecting against discrimination.  So we continue to have to cover 100% of the expenses for speech therapy for our child.  Today that means $916 a month.  Given that these are 30 minute speech therapy sessions you can imagine what the expenses for our son's other medical care are.

Fortunately, we have been able to provide this treatment for our child but the expense has changed our lives and plans for the future.  This has left me feeling very angry lately.  I'm angry that those who chose to poison these children are not going to be held responsible (and it is known who they are both at a bureaucratic level and an individual level...see to review the evidence).  I'm angry that these same bureaucracies that protected the financial interests of the pharmaceutical companies and themselves are now protecting the financial interests of health insurance companies.  The only systems and individuals who continue to pay are the families and children of autism.  They have paid physically, emotionally and financially over and over again.  Please help their voices be heard and contact your representative today and ask for their support of legislation to provide treatment and protect children with autism.  Visit to read about proposed legislation and see how you can help.


Disclaimer:  The material on this site is for informational purposes only and is not to be meant as medical advice.  Please consult a trusted and knowledgeable physician when making medical and treatment decisions.

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