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One Small Step For Awareness, One Giant Leap for Coverage

Mr. John Burress From Winston-Salem Provides Testimony to NC Senate Health Committee

Today I witnessed in awe a community of diverse people from across our state come together in unity, with standing room only.  Although clapping is not typically the protocol for legislative meetings, the North Carolina Senate Health Committee Hearing on SB 1265, Treatment of Autism Spectrum Disorders, was subjected to enthusiastic applause after every honest and highly personal testimony by a grandfather, three mothers, and two fathers.  Our sponsor of the bill, Senator William Purcell, even joined in after a while!

After the hearing, Tre Benson, the devoted father from Lee County, echoed this same sentiment:

I thought those of us parents asked to speak would be able to keep it together, just the facts, cold cut and dry but when any of the speakers mentioned their child, personalized their point, we all instantly had those “walk a mile in my shoes” magically slipped onto our feet, we felt the heartache and love fill the room with tears. I saw doctors in their white coats with faces wet from the water streaming down their faces. It was a blessing to have seen strangers connect in such a way.

The Autism Society of North Carolina has been tirelessly working at the Legislature for this bill, coordinating with the autism community throughout the state, in addition to graciously hosting a lunch for all who attended afterward at their Raleigh office.  Autism Speaks also deserves kudos for drawing families to the hearing and especially for Lorri Unumb, Senior Policy Advisor and Counsel, who gave a pretty good impromptu class in what I’d call “Autism 101” in response to legislators’ questions about the differences between Pervasive Developmental Disorder-Not Otherwise Specified, Autistic Disorder, Autism, Asperger Syndrome, and Autism Spectrum Disorders.

We are far from claiming a victory for autism health insurance reform.  The Senate Health Committee did not vote today, as they are waiting for the fiscal note to be drawn up.  Stay tuned to ASNC and Autism Speaks e-alerts.  But from this day forward, know that when we work together, our loved ones benefit greatly.  I was honored to witness it with my own tear-filled eyes.


5 Responses

  1. “Autism 101″

    At first I thought those questions were softballs being lobbed for Lorri to smack out of the ballpark until it became obvious he actually had no idea what autism was.

    Then I was a little annoyed (OK pissed) that a law maker serving on such a committee knew so little this far into the discussion.

    Then I remembered there are still some people in my family that think Ben will be the next Einstein or Bill Gates, that autism is a quirk that usually by some mysterious reason just fades away in kids at around 7 years of age.

    Then…. then I remember way back when, arguing with a doctor how my son couldnt possibly have autism because he wasnt banging his head on the floor.

    Not everyone gives autism a second thought, life is too filled with other stuff.

    Day 51 of oil covered pelicans, all hands on deck, estuaries endangered, jobs lost, many millions in clean-up, tourist flee elsewhere, President wants to”kick ass”, 168 global news stories a day…..

    Ahem… one in 110 with autism, 40,000 kids this year will be diagnosed. 3.2 million bucks (today’s dollars) will be spent per kid over their lifetime. Life expectancy, no one knows for sure…..


    • Bensmyson,

      My take on this particular committee member’s question was that he was trying to ask why should we require autism to be covered, when all those hundreds of other disorders in the DSM IV are not covered…no one got a chance to address this. The answer is because all the others are covered and autism has been excluded. However, every time I think we have enough “autism awareness”, thank you, I am eventually confronted with a situation like you describe. Proper education for all stakeholders is key.


  2. I have tears coming down my cheeks RIGHT now after reading this!
    KUDOS to the people who put the event together, contacted the fam. & everyone involved in the autism comm. & ESPECIALLY those who attended the hearing. Our appreciation goes BEYOND the limits to ya’ll for going & speaking up!!
    I wasn’t able to attend, but did a little part by sending various emails to my party county’s Rep.
    We’d just moved a step further on the rd. to succeed with our goal. Hopefully, that will be ahead next!!!
    Blessings to all!!!
    Best, b.

  3. It was a such a privalege to be in the audience on Wednesday and witness such support for our kids with ASD. I have been traveling this road for over 12 years, and although there is still much awareness work to be done, we have come so far. Thanks to ALL those who have worked so hard to make this bill a reality! When this passes, it will have a HUGE impact on thosed who live with ASD.

  4. Way to go people. Our efforts will bear fruits soon. It is a battle that we will win one day… for our loved ones who are there with us yet so far away…

    If there is anything which autism has taught our family is .. perseverance! And this will get us through the toughest times. Getting a bill passed should be damn easy than what we go through every minute of our lives.!


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