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Announcing The Combating Autism Act Reauthorization Coalition

JoinUs President Bush signed into law the Combating Autism Act (CAA) on December 19, 2006.  This landmark legislation authorized $700 million in research funding over five years and set the goal of finding the cause (including possible environmental causes) and treatments for autism.  The Act sunsets on September 30, 2011. 

A coalition of leading community organizations is coordinating an effort to seek reauthorization and has prepared a list of Guiding Principles.  A broad consensus on these principles is the essential first step before legislation can be crafted to implement these ten principles as policy (details on each principle follow below):

1) Recognize that our country faces a national public health emergency.

2) Direct increased resources for a lifespan of autism services through established services infrastructure at the state level.

3) Dedicate federal research to strategic research that can halt the autism epidemic in its tracks.

4) Conduct autism surveillance with the scope, timeliness and rigor appropriate to the need.

5) Focus strategic new research in areas that can yield meaningful near term results. 

6) Keep individuals with autism safe from accidental death and injury.

7) Prevent harmful restraint and seclusion of autistic individuals.

8) Address critical gaps in vaccine safety research and policy governance.

9) End health insurance discrimination against individuals with autism. 

10) Develop autism policy with an open, transparent approach.

We invite all organizations to mobilize and join in this vital effort.  Contact information, an updated list of organizational members, and relevant documents can be found at CAACoalition.org.
 
The theme underlying all the Guiding Principles is that we need a legislative response driven by the seriousness of the epidemic, by the opportunity to prevent new cases and treat existing cases with the same urgency as our national response to hurricanes, floods, and pandemics, and by the necessity to provide adequate supports and services to facilitate people on the spectrum to lead full and complete lives.  Accordingly, the first principle calls for the formal legislative recognition of the autism epidemic as a national health emergency without the usual hedging language from CDC that they don’t know how much of the increase is “real.”



The original Act was primarily focused on research with some additional funding for outreach and awareness education.  It established the Interagency Autism Coordinating Committee (IACC) to advise the Secretary of HHS on all matters relating to autism and develop and update an annual strategic plan for autism-related research.  CAA 2011 must restructure management of the research enterprise into a new National Institute for Autism Research, re-engineer the grant-making process to rapidly achieve the goals of prevention and treatment, and ensure vigorous and meaningful accountability, oversight, and broad community participation.
 
Research Funding Priorities Research funding must be re-prioritized and focused on the specific areas with the greatest payoff to achieve the goals of prevention and treatment.  It is especially important that scarce research dollars be spent wisely in order to provide the greatest and quickest leverage.  Accordingly, there must be a considerably greater focus on environmental factors, epigenetics, and on “translational” research that can quickly link bench science and clinical research to immediate medical and behavioral improvements.  Money must be invested in research yielding the greatest benefit in the shortest time.
 
The legislative history of the original Act called specifically for research on vaccines as a potential cause of autism.  However, despite repeated requests from across the community, ongoing compensation of vaccine-caused autism in Vaccine Court, recommendations and coordination from the National Vaccine Advisory Committee, and privately-funded research that continues to reveal damage done by vaccines to children and animals, IACC has refused to fund essential research such as a comprehensive comparison of vaccinated with unvaccinated children.  CAA 2011 must specifically require a comprehensive program of vaccine safety research focusing on an ongoing comparison of vaccinated with unvaccinated children and animals and on the mechanisms of injury.
 
The CAA provided for research relating to services and supports but was not designed to actually fund them.  Several bills have been introduced during recent sessions relating to demonstration projects and funding for services and supports, training, restraints and seclusion issues, wandering disorder, and infrastructure, but none of these has passed. 

Especially in view of under-funding of existing mandates in Medicare and the aging of the leading edge of the epidemic through their teenage years and transitioning into adulthood, comprehensive legislation is needed to address – and fund – these complex issues.  CAA 2011 must direct significantly increased resources for services through existing state-level infrastructure to the families and providers who are in the best position to meet the specific needs of individuals with autism.  As with research governance, CAA 2011 must improve services governance by separating IACC into separate specialist committees that will be better able to focus on the quite distinct constituencies, specialties, and challenges faced in marshaling and coordinating the services-related resources throughout the federal government.
 
Because the urgency of the response and need will be aided by timely and accurate data on the scope and nature of the epidemic, CAA 2011 must significantly strengthen the gathering and reporting of information on the number of individuals with autism, the severity of their diagnoses, and their specific needs for services and interventions.
 
Individuals with autism face unique safety issues.  Legislation must address these by guaranteeing that children in school enjoy a learning environment free from dangerous restraints and seclusion and by providing first-responder training and funding for systems to prevent wandering and ensure the safe return of children to appropriate supervision.
 
Legislation reforming various aspects of insurance has passed in over 20 states, and the recently passed national healthcare reform legislation addresses some aspects.  However, in view of the strong popular support for “repeal and replacement,” CAA 2011 must provide for parity of coverage with other medical conditions and ban all forms of insurance discrimination arising from an autism diagnosis.
 
The reauthorized CAA must be the product of an open and transparent process.  In the present toxic environment in Washington, its chances of passage will a strong community consensus on first, guiding principles, and then the details of policy implementation developed through a close collaboration of organizations that have disparate interests and objectives.  Most important, passage will require an extraordinary effort in grassroots lobbying from throughout the community.  In this election, and in preparation for the reauthorization effort, take the time to visit your local Representatives and Senators and educate them as to the urgent of the community for a comprehensive and coordinated policy response to the autism epidemic. 

We invite all organizations to mobilize and join in this vital effort.  Contact information, an updated list of organizational members, and relevant documents are at CAACoalition.org

Age of Autism
Autism Action Network
Autism One
The Autism Research Institute
The Autism Society of Connecticut
The Autism Society of Greater Phoenix
Elizabeth Birt Center for Autism Law and Advocacy
FoggyRock
Generation Rescue
Greater Brunswick Special Families
National Autism Association
SafeMinds
Talk About Curing Autism
The Pilot House

Thank you.

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Autism is not a disease. It's just the way we are. How many Autistic People and Aspies are members of this coalition?

Oversight on the web site. The wording has been fixed.

And no, support for the guiding principles is not limited to autism orgs. We are encouraging all stakeholders and supporters of those with autism to join in!

I think this is great. However, I see that the wording of #2 ids different on the website of the CAA Coalition - here it is "2) Direct increased resources for a lifespan of autism services through established services infrastructure at the state level".

On the website they don't have the lifespan of services in the title. Sorry to sound nitpicky, but hey, I'm a writer :-). We need the emphasis on life span of services to be clear in the heading, as it is in your blog here. Is that possible? Otherwise it does not have the emphasis it needs, it is not clear.

Questions: can only non-profits join this coalition, or is it open to others?

Thanks!

until this hits a politician in high authority, a newscaster with extreme visibility, a president with a child with it, an executive with millions who could really change things by his own money, and lastly all the pharmaceutical presidents, if not every other child on a street block, autism will continue to steal away children to the land of where's my child. It is highly unlikely that their will be admissions, apologies, changes, repercussions, perceptions and lastly that justice will be served for and behalf of these children and their families. This is a national security issue, intwined into the viability of the vaccine program in general (think of our armies, must they also trust their leaders?), the poisoning and sickening on purpose of the population by our toxins and food (so called) to reduce and control it. Why autism is at the core of this matrix as the "fall guy" is the most sickening aspect of this dilemna called the new epidemic of autism/neuroimmune diseases in general. There must be some very evil vortex going on here, more than money, more than power, more than control. It's like a large black hole, and all our efforts are actually making things worse. The more we want a green vaccine, the more we get more on the schedule. The more research we put out there to prove our hypothesis, the more they try to either downplay it, and or come up with some bogus research, especially leaning on synapses, genes, and mutations. The more we try to be concilliatory, the more they think we can be controlled, silenced, and kept away from the hot touch of the reality here...that our children have been robbed of their potentials. Somehow, I don't think this inertia of committees, ever slows down the inertia they produce by their network of EIS Media agents, their control of politicians, and mostly the MINDS of the american people. Yes, until it happens to YOUR CHILD, your blah about it. Nothing to see here, move on....

HoxtonPaul - one of the guiding principles mandates fully funding programs through existing channels service for teens and into adulthood from housing to employment support - absolutely. Adult services are a huge part this - and have been ignored while genetics research gets the lion's share of the dollars. Or research to tell us we have stress. We want support for the tens of thousand of Americans w autism who will enter a system wholly unprepared for their needs, as this population has never existed in these numbers in our history. But you have to plug the hole while you bail the boat. Thanks for commenting.

KIM

Sorry, something just occurred to me.

Who is paying for the research, and is it money that could otherwise have gone towards the immediate support of people and families affected by Autism?

You see, I am based in the UK. Here, we do not have all the money in the world to do abstract and theoretical research. We need every penny we can get to support people with Autism & their families.

But you all are not interested in that. Because you are all parents who want cured children, so when they are normalized they will not grow up to be Autistics.

Then, you will all naturally not be interested in Autism in general. Will you? Why should you be?

Glad to see this is happening. Does anyone know where this currently is within the reauthorization process and who is heading that overall?

Thank you

Great idea! The challenge will be keeping our eye on the ball and preventing our opponents from corrupting this work and bending it to their purposes.

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