Public Law 109-416 is not just about scientific research.
The Interagency Autism Coordinating Committee has among its duties, to develop and annually update a summary of advances…related to, among other things… “access to services and supports for individuals with ASD.”
“In general the committee shall be composed of” – and it lists a number of nonscientific agency members including:
“Representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorders such as the Department of Education” and other non-research organizations.
The presence of these representatives indicates that the mandate of the law is broader than scientific research, especially as it has been more narrowly defined several times during the past two IACC meetings.
So, go back and add in the suggested services objectives such as training, safety improvement, and others. The additions about improving safety and other aspects of service development and delivery are relevant and should be addressed by this committee.
Other things: A person on the autism spectrum is needed to stand in for Stephen Shore when he is not here. This situation needs to be remedied immediately.
Increase the number of individuals on the autism spectrum who have a direct voice on the IACC committee and subcommittees.
Make at least one additional change in the composition of the committee, and that is to include another agency with a focus on actual research across the lifespan. For example, the The National Institute on Disability and Rehabilitation Research has as its goal a focus on rehabilitative research that impacts individuals throughout their lives.
Remove language that urges cost savings as a goal of research. There *is* a danger that a focus on cost effectiveness will preclude those who do not “improve” or who are in need of more substantial services throughout the lifespan. The IACC should move away from language of “costs to society.”
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network