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An Advocacy Call to the Nation

October 13, 2010 13 comments

This post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. To accomplish this mission, we have devoted much of our advocacy efforts over the last several years to ending the routine discrimination against people with autism by health insurers. To date, twenty-three states have enacted legislation requiring health plans to cover medically necessary, evidence-based autism treatments. Currently, the State of New York sits on the brink of passing what could become one of the most comprehensive state laws passed thus far.

For several years, families, legislators and advocacy organizations in New York have been working diligently towards the passage of meaningful autism insurance reform legislation. S7000B is the product of this mutual effort. Passed unanimously by both the New York Assembly and the New York Senate, this legislation would at long last require coverage of evidence-based treatments like speech therapy, occupational therapy, physical therapy and applied behavior analysis. S7000B also insures that coverage for behavioral therapy cannot be denied because it is deemed educational or habilitative in nature. Just as important, the bill has no annual monetary coverage limitations or limits based upon age. It also contains provisions to ensure that existing services covered under health insurance as well as services provided through an individualized family service plan, an individual education plan or an individualized service plan are continued.

If you don’t live in New York, you may be wondering what this legislation has to do with you. Although this bill originates in New York, advocacy from stakeholders all across the country is critical. Here’s why:

If you happen to live in one of the twenty-three states that have enacted an autism insurance bill, then you know the impact this legislation can have on the families that now or soon will benefit. They will no longer need to worry about using all their financial resources to pay for evidence-based therapies that their children with autism need.

If you live in one of the twenty-six states that have not yet passed autism insurance reform, then you know the heartbreak a family faces when they receive denial after denial from their insurance company for treatments their child needs to live a full life, join their peers in school, and interact with their siblings.  And, if you have a health plan that is not covered by state law (if, for example, your employer has a self-funded or ERISA plan), then your help is needed most of all. Enactment of autism insurance reform in New York will mean that our community is one step closer to being able to make the case for reform at the federal level. Federal autism insurance reform will ensure that every family in America will get the insurance coverage for autism therapies that they need and deserve.

At the end of the day, it all comes down to ending the discrimination families living with the challenges of autism face when dealing with health plans.  As one New York father pointed out to me recently, individuals with autism are simply looking for equality. He went on to emphasize how this piece of legislation would require coverage for evidenced based treatments, equality in its truest sense.  He spoke from an extremely personal place, sharing how last year he was diagnosed with Non-Hodgkin’s Lymphoma.  His course of treatment, which was evidence-based, was covered by his health insurance and because of this treatment, he is doing well.  He went on to ask the obvious question:  why his beautiful nine year-old son with autism was not afforded the same opportunity?

It’s time for this discrimination to stop.  You can help by emailing Governor David Paterson and urging him to sign S.7000B into law. He needs to hear from you – as a member of the nationwide community of families and loved ones of individuals with autism – even if you do not live in New York. Please take two minutes to make a difference today.

Please help us today in New York to create a better tomorrow for families in all states. Thank you.

 

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