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.