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Rep. Bill Posey Blogs: "Fix The Combatting Autism Act"

Combatting Autism Act: Autism Policy Reform Coalition Seeks to Improve Stagnant Act

Safeminds 2014 LogoFrom our sponsor Safeminds on the reauthorization of the Combatting Urgent-Actions-WBMdAutism  Act: Pick up the phone and call your Representatives and Senators.  If the CDC is correct, there are 1.2 million families with affected children in the country.  That is a lot of phone calls.  Tell them what your family needs.  Tell them you support the APRC principles and that you expect them to work for a better bill.  Tell them that 5 more years of the status quo is not going to help.

By Katie Weisman, for the SafeMinds Government Affairs Committee

I’ve lived in “autism land” now for over 14 years with 3 wonderful boys.  I love my children more than my life, but I cannot say that it has been an easy road and I wonder how much less they would have to work and struggle if autism didn’t affect them the way it does.  Would they have girlfriends and be driving already?  Would they be able to write a paragraph independently?  Would they have part-time jobs and be saving for college?  I have long since given up trying to predict where they will end up and I am beyond grateful for how far they have come, from being completely non-verbal at 4, but I will never give up fighting to get back what was taken from them and right now is one of those opportunities.   They, and all of the other kids and adults with autism, deserve real help and real action.

I am asking all of you who have ever fought for your kids to help and take action.
   
CAA

The Combating Autism Act is up for Reauthorization by the end of September.  SafeMinds is part of a coalition of groups advocating for substantive change in the bill.  We are calling ourselves the Autism Policy Reform Coalition (APRC) and we represent over 100,000 families nationwide.  You can read about our member groups and our policy recommendations on our brand new website: http://www.autismpolicy.org/

In a nutshell, we are working for the following in the bill:

1) A two-office model of autism policy coordination – one for research and one for working with all the other federal agencies.  We truly need new leadership from the top down.  I want this legislation to ensure that there is at least one person with whom the “buck stops”; just one person who wakes up every morning and says, “My job is to help people with autism lead better lives.”

Right now, the IACC, which is “in charge” of federal coordination is not functioning.  It holds a handful of meetings a year, it has no authority to actually allocate any funds, and it does not have the resources to implement anything.  This is a video from the end of the July 2013 IACC meeting in which members (mostly public) express their frustration with how things are going:




2) More community input into the research that gets funded so that the priorities shift away from basic research towards studies that will help people.  Treatment, best-practice, environmental causation and prevention are all grossly underfunded.  As an example, in the last 5 years reported, $169.8 million dollars has been spent trying to find genes for autism, while only $9.6 million was spent on studies of interventions to help non-verbal individuals speak/communicate.  I do not believe that this represents the priorities of individuals with autism or their families...

Read the full post at Safemiinds.

Comments

Roland

This is typical. This is what happens at every level when talking about helping autistic people and their families. Let's have another meeting. Let's talk about this later. Let's discuss this at a later time. Further research needed. Another meeting. It is futile because this is what those who know this is a serious crisis want. More meetings equal more delays in solving the critical issues that affect thousands of families living with autism. There is no time for more meetings when you are living in constant crisis. The time to act for people with autism was decades ago. We don't need another task force. We don't need another meeting. We need ACTION. Too many key positions in high levels of agencies serving autistic people are filled with bumbling idiots who can't problem solve. Who don't care. Who are just idiots with a title and care more about attending more meetings and traveling to seminars than actually helping those who suffer from autism.

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