Thursday, September 4, 2008

ASAN Urges Self-Advocates to Write Comments to the IACC

The following announcement was released today by the Autistic Self Advocacy Network. We are strongly urging autistic self-advocates and our allies to submit comments to the U.S. government regarding autism research and services, so that our voices will be heard when the funds are allocated. It is not necessary to be a U.S. citizen to submit a comment.


The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.

The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.

The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.

REQUEST FOR INFORMATION #1
Topic: Priority Questions for Supports and Services
Deadline: 19 September, 2008

The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

This information will be used by the IACC to guide which autism research projects get funding.

To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html

The deadline for comments is 19 September, 2008, so please make your comments prior to that date.

REQUEST FOR INFORMATION #2
Topic: Comments on Draft of Strategic Plan
Deadline: 30 September, 2008

The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.

A summary of what is proposed in the plan is as follows:

+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.
+ Discover how ASD affects development, which will lead to targeted and personalized interventions.
+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.
+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.
+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.
+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.

To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.

The deadline for comments is 30 September, 2008, so please make your comments prior to that date.

1 comment:

Sullivan said...

This is really cool. More people need to be involved and give feedback. You inspired me to take more action!