ASAN Letter Expressing Concern re: House Subcommittee Hearing on Autism

18 May

A hearing has been scheduled for next week with the Committee on Oversight and Government Reform for it’s Subcommittee on Government Operations.

The hearing, Examining the Federal Response to Autism Spectrum Disorders, is scheduled for Tuesday, May 20, 2014.

The Autistic Self Advocacy Network (ASAN) has issued a letter expressing concern over the apparent lack of autistic input to the hearing. That letter is quoted below.

ASAN Letter Expressing Concern re: House Subcommittee Hearing on Autism

May 17, 2014
Dear Chairman Mica and Ranking Member Connolly:

On behalf of the Autistic Self Advocacy Network, the nation’s leading advocacy organization run by and for autistic people, I write to express concern about the upcoming May 20th, 2014 Subcommittee on Government Operations hearing entitled “Examining the Federal Response to Autism Spectrum Disorders.” To our knowledge, no autistic witnesses or representatives from organizations run by Autistic people have been invited to testify. ASAN is profoundly concerned by the apparent absence of representatives from organizations run by autistic people and urges that the hearing not go forward without representation by those most directly impacted by federal autism policy.

Autistic individuals are uniquely suited to testify about which federal activities are most needed in order to improve our own lives. Accordingly, when the House Committee on Oversight and Government Reform proposed a hearing on autism in November 2012, ASAN and other disability rights organizations voiced strong opposition to the planned absence of witnesses from organizations run by autistic people at that hearing and was pleased when the organizers of that hearing responded by inviting two autistic witnesses representing organizations run by autistic people to testify. The presence of autistic voices at the November 2012 hearing helped to enrich the conversation about the federal government’s response to autism.

We are disappointed by the prospect that, to our knowledge, the Committee has not invited Autistic witnesses from organizations run by autistic people to the upcoming hearing. It would truly be unfortunate if the progress Congress made in 2012 were reversed in 2014. ASAN appreciates the Subcommittee’s interest in federal autism policy and urges it to ensure the inclusion of witnesses from organizations run by and for autistic adults in its witness list. We stand ready to assist the Subcommittee in its efforts. If we can be of any assistance, please feel free to contact us via ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org.

Sincerely,

Ari Ne’eman
President
Autistic Self Advocacy Network

cc: Chairman Darrell E. Issa
cc: Ranking Member Elijah Cummings

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One Response to “ASAN Letter Expressing Concern re: House Subcommittee Hearing on Autism”

  1. Liz Ditz May 19, 2014 at 17:50 #

    The witnesses are up:

    Thomas R. Insel, M.D.
    Director, National Institute of Mental Health
    Chair, Interagency Autism Coordinating Committee

    Mr. Michael K. Yudin
    Acting Assistant Secretary, Office of Special Education and Rehabilitative Services
    U.S. Department of Education

    Marcia Crosse, Ph.D.
    Director, Health Care
    U.S. Government Accountability Office

    With the GAO representative there, it seems like last year’s report is probably the topic.

    In 2013, there was a Government Accounting Office (GAO) report on federally-funded autism research, claiming much possibly-wasteful duplication of research.

    This hearing may only address issues raised in that GAO report (described below). As such, the hearing may have been in the works for some time within the Federal Government, without the involvement of any non-government organizations.

    GAO Report:
    FEDERAL AUTISM ACTIVITIES:
    Better Data and More Coordination Needed to Help Avoid the Potential for Unnecessary Duplication
    GAO-14-16: Published: Nov 20, 2013. Publicly Released: Nov 20, 2013.

    http://www.gao.gov/products/GAO-14-16

    FIRST PARAGRAPH
    “Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the Interagency Autism Coordinating Committee’s (IACC) strategic plan. Funding similar research on the same topic is sometimes appropriate–for example, for purposes of replicating or corroborating results–but in some instances, funding similar research may lead to unnecessary duplication. The potentially duplicative research projects included those funded by the Department of Defense (DOD), Department of Education (Education), National Science Foundation (NSF), and agencies within the Department of Health and Human Services (HHS)–Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention (CDC), Centers for Medicare & Medicaid Services, Health Resources and Services Administration, National Institutes of Health (NIH), and the Substance Abuse and Mental Health Services Administration. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency. For example, 5 agencies awarded approximately $15.2 million for 20 autism research projects related to 1 objective to test methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings.”

    Please see the full report, linked above.

    =========

    The GAO made seven recommendations (see above report) requiring response from:

    Department of Health and Human Services (four responses)
    National Science Foundation (one response)
    Department of Education (one response)
    Department of Defense (one response)

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