Speak Out for Services · 2008-08-19 16:45

On August 11, the National Institute of Mental Health issued the following Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders. The deadline for responses is September 19, 2008.

On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.

Members of the IACC Services Subcommittee include autistic advocate Stephen Shore, Ed.D.; Margaret Giannini, M.D., Office on Disability, U.S. Department of Health and Human Services; Christine McKee, J.D., parent of an autistic child; Patricia Morrissey, M.D., Administration for Children and Families; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration; Story C. Landis, Ph.D., National Institute of Neurological Disorders and Stroke; Gail R. Houle, Ph.D., U.S. Department of Education; Catherine Rice, Ph.D., Centers for Disease Control and Prevention; Lee Grossman, Autism Society of America; and Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services.

Please take this opportunity to speak out for appropriate services and supports needed to enable autistic citizens to achieve maximum independence and a satisfactory quality of life.

Request for Information:
Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders

Notice Number: NOT-MH-08-016

Key Dates:

Release Date: August 11, 2008
Response Date: September 19, 2008

Issued by: National Institute of Mental Health (NIMH)

Description

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.

Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports.  For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

Responses

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.

Inquiries

Inquiries regarding this notice may be directed to:

Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Email: schwechtera@mailnih.gov

Comments


  1. Thanks Kathleen for posting about this.

    — hj    2008-08-19 18:04    #

  2. Thanks for the heads up, Kathleen.

    — Anne    2008-08-19 19:06    #

  3. I wonder if any of the people you named on this IACC are willing to realistically face the huge disparities in the way services are allotted regionally and racially in California and elsewhere. And in the way services are not being delivered at all or under the wrong label to probably a million adults. Or will they all just try to “be nice” support the hideously unfair status quo?

    — Ms. Clark    2008-08-20 04:09    #

  4. Hi Kathleen — I propagated this material to the Council of Parent Attorneys and Advocates, a special-education listserve, the GreatSchools autism groups & an LD group there, and as many autism blogs as I could find.

    I don’t know if my parents will bear any fruit, but it is a start.

    — Liz Ditz    2008-08-20 15:57    #

  5. I’m thrilled to hear about this renewed interest. I know that there is very little support for parents of children with autism in this area of rural New Mexico. Teachers and administrators in the schools have little knowledge about the disorder, and respite workers have none.

    — Alex Cvijanovich    2008-08-21 09:33    #

  6. Alex, I’m glad to see the IACC focus on services, too. For a while it seemed as if the committee’s primary interest was the acquisition of brain tissue from dead autistic people.

    As Ms. Clark observed, regional and racial disparity in service delivery is a huge problem that needs to be rectified. I’m not surprised to hear that there’s little support out there in the desert. A Rural Autism Education Initiative should be established to help teachers and respite workers to successfully interact with their autistic students and clients.

    — Kathleen Seidel    2008-08-21 11:27    #