CALL TO ACTION! Your Chance to Change the Course of Autism

aprcCALL TO ACTION!

The House version of the Combating Autism Act is a mediocre bill being fast-tracked to a committee vote. In 8 years not one case of autism has been prevented, and no treatments have surfaced after spending $1.6 billion. We need your help to get it put right! Today and tomorrow, post on House Majority Leader Eric Cantor’s Facebook page at www.facebook.com/ericcantor and ask him to wait for the Senate bill before calling a vote. Tell him our children deserve a second look.

1_CANTOR_kWide_620x350Why Are We Here:  Once considered a rare and incurable condition, the incidence of autism has skyrocketed in the U.S. over the last 20 years. In response, the federal government finally passed the Combating Autism Act (CAA) in 2006, which was reauthorized in 2011.

The CAA authorized the creation of the Interagency Autism Coordinating Committee, known as or “IACC,” to coordinate autism policy and research across federal agencies. Despite valiant efforts on the part of individual committee members, eight years later very little progress has been made in “combating autism.” Approximately $1.6 billion has been spent to date with no real gain in understanding or recognition of the causes, best treatments, or means of prevention. Today, there are 30 percent MORE 12-year-olds with autism than there were just two years ago.

Autism is a Spectrum:  Despite what you may see in mainstream media, autism isn’t just a “quirky difference in brain wiring,” resulting in “Sheldons” from The Big Bang Theory. Autism is a spectrum disorder. Thought there are high-functioning Sheldon types,  approximately one-third of people with autism are severely disabled by it: many are non-verbal and have co-occurring medical conditions like gastroenteritis, seizures and mitochondrial dysfunction. Forty-nine percent may “wander” away from caregivers at any time, often heading for water where they frequently drown. Eleven children with autism have “wandered” to their death since May 1st of this year alone. Autism costs families and taxpayers way, way too much already.

Here are the Facts:  The IACC meets several times a year for one day. The head of the IACC is Tom Insel, who is also the head of the National Institute of Mental Health. By his own testimony, he spends approximately 10 percent of his time on autism. There is no accountability built into the CAA. The IACC reports to no one. There is no mechanism to assess the effectiveness of its strategic plan or even whether the plan is being followed. As a result, according to a recent GAO report, up to 84 percent of autism research dollars have gone into potentially duplicative research — which is hardly a shock given that the majority of research has focused on genetic research studies, which have yielded the nearly useless conclusion that there are approximately 1000 genes “linked” to autism.  How will this help the over 1.5 million people living with autism today?

Take Action Because:  The IACC structure CANNOT effectively address the autism epidemic, and the CAA is up for reauthorization this September. The bill currently in the House does not substantially change what is already in place. Much of the autism community is fed up with the utter lack of progress made on the federal level and would rather see the bill DIE than be reauthorized in its current form. What happens if the bill dies  — that does not mean that money for autism research goes away. That’s just not how the NIH works.)

Instead, the Autism Policy Reform Coalition is asking for major reform, including an office of autism research modeled after the Office of AIDS Research, which has been very successful in changing the course of HIV-related illness in this country.   We think our requests are reasonable and necessary for the autism community and the country as a whole, and we are actively working to get the Senate to include our changes in their version of the bill. We  may finally have a chance of turning this situation around. Please help us achieve the reform we so desperately need!

WHAT TO DO:

The House bill could be voted on at any time. We want to slow this bill down in order to give the Senate time to come up with a better bill – one that includes OUR suggestions for reform. We need you to make this happen. Today we’re asking you to go to the House Majority Leader Eric Cantor’s Facebook page and ask him to slow down the bill.

Please post a comment like this:

Representative Cantor, please postpone any vote on the Combating Autism Reauthorization Act until there is a Senate version of the bill. The Combating Autism Act has been a failure, and the House reauthorization bill doesn’t fix any of the things that need to be fixed. A recent GAO report shows that up to 84% of the $1.6 billion dollars that has gone to autism research is duplicative, like the gene studies that have now “linked” over 1000 genes to autism. There is so much more we could be doing with that money to help people with autism and their families.

(And PLEASE add your own personal words. It makes each comment so much more powerful.)

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Then, when you’re done, please head to www.autismpolicy.org, click on “Join us!” to sign up for our emails. We’ll  sending out a few simple action alert items this summer — whenever we really need to show legislators that we mean business. While you’re there, please consider making a donation: $10, $20, or $200 — whatever you can afford. While the APRC represents a huge number of people, most of them are desperately strapped for cash. We’re a small organization and every little bit counts!

Thank you for your help in getting this done. We really appreciate it!

Sincerely,

~ The Autism Policy Reform Coalition
and
The Thinking Moms’ Revolution

P.S.  If you’d like to post your comment here as well, it could encourage others to take action.

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6 Responses to CALL TO ACTION! Your Chance to Change the Course of Autism

  1. Carolyn says:

    I would suggest that parents contact the House Majority Leader via his e-mail for the office. In doing so too you will have a better chance of reaching him in his role as the House Majority Leader, rather than via his regular Congressional office e-mail.

    You can access that e-mail via this form from the House Majority Leader’s office:
    http://majorityleader.gov/contact/contact.html

    Additionally his twitter account is @GOPLeader and I’d urge folks to use that too.

    Just a side note as well. Congressional bills can be passed without even going to the floor. I would urge you to contact your Congressional representative and advise them that we as a community are not being properly represented within the creation of these bills. Provide them information on the IACC and the ineffectiveness of the CAA in the past eight years to provide access to your child to appropriate health care as well as educational services and supports. This current bill will be status quo and allow for the business of autism to grow and continue to create a “have vs have not” system of delivery for only a few families that are able to access what has been deemed a medical necessity. As we know that still is taking jumping through many hoops due to the autism specific legislation that Autism Speaks has been passing in many states. Please tell your story folks, these folks work for us, not visa versa, and not for those who may have more money to lobby due to direct financial interests.

    This is the bill as it was put through after mark up in committee today under the new title the Autism CARES Act of 2014.

    http://docs.house.gov/meetings/IF/IF00/20140609/102330/BILLS-113-HR4631-U000031-Amdt-5.pdf

    Thank you everyone and keep doing what will be best for your child. We are the only ones really that knows what that is.

  2. Just sent a message and was able to post it on his facebook page:

    https://www.facebook.com/ericcantor

    I would encourage others to do the same…

    We embelished a bit!! :)

    Representative Cantor, please postpone any vote on the Combating Autism Reauthorization Act until there is a Senate version of the bill. The Combating Autism Act has been a failure, and the House reauthorization bill doesn’t fix any of the things that need to be fixed. A recent GAO report shows that up to 84% of the $1.6 billion dollars that has gone to autism research is potentially duplicative, like the gene studies that have now “linked” over 1000 genes to autism. There is so much more we could be doing with that money to help people with autism and their families. THERE IS AN EPIDEMIC OF AUTISM in this country…and we NEED YOUR HELP TO HALT IT, by HALTING this bill until it has a more PRODUCTIVE structure to actually COMBAT AUTISM!

  3. Susan Ford Keller says:

    You can post on House Majority Leader Cantor’s FB page but your post will not appear there. You can comment on posts he’s made on his page or email him here: http://cantor.house.gov/contact/index.html

    • ProfessorTMR says:

      Thanks for the information! Evidently, he has a different kind of Facebook page from TMR’s! Consulting now with other coalition folks. We’ll update.

      Update: Apparently, the admin will STILL see the messages, so you can still do as suggested. Another option is to click on Message at the top of the page and send your comment as a message. Either way whoever is administering the page should get the message and relay it to Cantor himself.

  4. Does anyone know what the proposed differences will be int he Senate version?

    • ProfessorTMR says:

      Jenny, if you go to the http://www.autismpolicy.org you will see what we WANT them to put in. We actually have good reason to believe that they are listening and will at least TRY to give us at least some of what we want. We will let you know when the Senate bill drops what the good points and bad points are.

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