Announcing The Combating Autism Act Reauthorization Coalition

[Guest guest]

CAACoalition.org <http://caacoalition.org/> Announcing The Combating

Autism Act Reauthorization Coalition

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 <http://caacoalition.org/>

CAACoalition.org <http://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 <http://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

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.