On behalf of the Autistic Self Advocacy Network, I am writing to urge opposition to S. 1094, the Combating Autism Re-Authorization Act of 2011. Although we strongly support funding for research and services to enhance the lives of individuals on the autism spectrum and our families, S. 1094 would not accomplish that goal. In fact, passage of S.1094 poses a substantial risk of harming children and adults on the autism spectrum by locking in place an unbalanced set of priorities and separating autism policy from the broader scope of disability and developmental disability legislation. We urge your opposition to S. 1094 for the following reasons:

The Combating Autism Act is disability-specific legislation: Federal support of the needs of individuals on the autism spectrum should remain an important priority area – however, this support is more effectively provided through the Developmental Disabilities Assistance and Bill of Rights Act, the Americans with Disabilities Act, the Rehabilitation Act and other pieces of cross-disability legislation. Whereas disability- specific bills tend to develop constituencies of special interest groups primarily concerned with developing the “brand” of a particular condition or diagnosis, cross- disability legislation has a long history of meaningfully and effectively increasing the quality of life of individuals with all disabilities, including autism. As individuals on the autism spectrum ourselves, we believe that our needs are better met when integrated into general disability policy.

Expiration of the Combating Autism Act will not result in the loss of funding for research or services: Although the Combating Autism Act does possess certain valuable initiatives, such as the Leadership and Education in Neurodevelopmental Disorders (LEND) programs, existing statutory authority allows the Health Resources Services Administration, the National Institutes of Health and the Centers on Disease Control and Prevention to use discretionary funding to continue to support these initiatives. In fact, the LEND programs existed for over a decade prior to the passage of CAA and will continue to exist after its expiration. All of CAA’s programs which directly impact research and services can continue to be funded after expiration, should the relevant agencies choose to prioritize them.

Re-Authorizing the Combating Autism Act would lock into place a deeply imbalanced research and services agenda: According to the 2009 IACC Research Portfolio, only 3% of autism research dollars went to support research into the service- provision needs of individuals on the autism spectrum and less than 1% went into supporting the needs of adults on the autism spectrum. Much of this is due to CAA’s focus on research that looks only at the autism spectrum, whereas many of the most promising avenues of research aimed at improving the lives of individuals on the autism spectrum today apply to the broad scope of developmental disabilities. If S. 1094 is allowed to pass the Senate, this imbalance would continue for the next three years. Should CAA expire, additional flexibility will be opened up to allocate resources on the basis of need instead of diagnosis.

As an organization run by and for individuals on the autism spectrum ourselves, we are certainly willing to advocate for new legislation and funding even during a time of fiscal austerity. However, we feel that the autism and disability communities are not well-served by the passage of bills which will not positively impact the lives of individuals on the autism spectrum, our families and those with other disabilities. Instead, we urge that CAA be allowed to expire and consideration be given to incorporating the needs of individuals on the autism spectrum within the Developmental Disabilities Assistance and Bill of Rights Act and other relevant cross- disability legislation and policymaking.

As individuals with disabilities and our families struggle to set priorities in the midst of economic recession, we urge Congress to support assistance for people with disabilities that is relevant, timely and broad-based.  

For more information about The Autistic Self Advocacy Network, please click here or support them by contributing to their fundraiser on November 16th.