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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Webinar and Conference Call on December 10, 2008

The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on December 10, 2008 from 2:00 p.m. to 3:00 p.m. EDT

Subcommittee Member Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society of America (ASA); Cathy Rice, Ph.D., (representing Ed Trevathan) Centers for Disease Control and Prevention (CDC) (via teleconference); Gail R. Houle, Ph.D., U.S. Department of Education (DOE) (via teleconference); Christine M. McKee, J.D. (via teleconference); Bonnie Strickland, Ph.D. (representing Peter van Dyck), Health Resources and Services Administration (HRSA) (via teleconference); and Denise Juliano-Bult, M.S.W. (representing Thomas Insel), National Institute of Mental Health (NIMH), National Institutes of Health (NIH) (via teleconference); and Stephen M. Shore, Ed.D., Autism Spectrum Consulting (via teleconference)

Other Participants: Susan Daniels, Ph.D., Designated Federal Official, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Della Hann, Ph.D., OARC, NIMH; Azik Schwechter, Ph.D., OARC, NIMH; Jennifer Dreier, OARC, NIMH; Anne Sperling, Ph.D., OARC, NIMH; and Erin Bryant, M.J., OARC, NIMH

Welcome, Introductions, and Feedback from the November 21, 2008 IACC Meeting

Co-chair Mr. Lee Grossman welcomed the subcommittee members who then introduced themselves. Mr. Grossman then requested feedback from the participants about the IACC full committee meeting held on November 21, 2008. The subcommittee members were positive about the presentations on services and supports for children and adults with ASD heard during the November meeting, remarking that the presentations provided a comprehensive overview of the challenges and opportunities when seeking services and supports.

Dr. Denise Juliano-Bult praised the presentations for explaining the complexities of the process and was told that PowerPoint presentations and other meeting materials were available upon request by e-mailing. Dr. Gail Houle commented that she would like to see a presentation in the future from the Department of Education on supports and services provided for children under the age of 21 with ASD.

Dr. Bonnie Strickland asked whether initiatives from federal agencies could be highlighted in a systematic way at future meetings of the full committee. Dr. Della Hann addressed her question, stating that updates on federal activity would be heard and were intended as part of the Combating Autism Act (CAA).

Dr. Cathy Rice asked that the services subcommittee clarify what it is asking of the larger committee other than simple awareness of services and supports. The members of the subcommittee agreed that defining its goal is an important objective. Dr. Hann asked that the minutes from the October 10th subcommittee meeting be approved. The minutes were approved by the subcommittee and entered into the record.

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Reviewing the Request for Information Responses

Co-Chair Mr. Grossman informed the subcommittee that he and Ms. Ellen Blackwell intend to review the categories used in the working draft analysis to sort the public responses to the Autism Services RFI (NOT-MH-08-016). The Office of Autism Research had made an initial effort to categorize the 137 responses received from August 1 to September 19, 2008. Mr. Grossman said that certain comment categories may need to be more detailed; for example, the largest category (Healthcare/Treatment) may be further broken into categories like Services and Interventions. Mr. Grossman also said that some of the responses categorized as Education might be better classified as Provider Training or Education for Professionals. Mr. Grossman and Ms. Blackwell agreed to review the classifications in early January to provide feedback to the full committee.

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Integrating RFI Responses into the ASD Roadmap

Mr. Grossman asked that the subcommittee review the ASD Services Roadmap, presented to the IACC in May 2005, and suggest edits, deletions, and new material by January 23, 2009, in order to start to update the document. The ASD Services Roadmap was developed by the ASD Expert Working Group (EWG), a panel of autism experts established by the Services Subcommittee of the Interagency Autism Coordinating Committee in July 2004. The Roadmap's purpose was to provide a national blueprint to enhance existing systems; expand services for children, youth, and adults with ASD and their families; and coordinate services across systems.

Mr. Grossman stated that the Roadmap is a good foundation but needs to be modified with the information gained from the RFI and information provided by the federal agencies. Because of the PDF format of the Roadmap, subcommittee members were asked to make edits by citing page number and location or by copying and pasting the sections they wished to edit into a Word document and making the necessary revisions in the body of the file. Mr. Grossman and Ms. Blackwell will review the responses to the RFI and the subcommittee members' suggested revisions to the Roadmap in order to make recommendations to the full committee on revisions to the document.

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Future Speakers

Dr. Houle announced that Capt. Robert DeMartino, M.D., USPHS, will present at the full committee meeting on March 26, 2009. Capt. DeMartino, Director of the Behavioral Medicine Division at TRICARE, will present on the Department of Defense initiative to evaluate military school services for children with autism. (Note: As of February 19, 2009, Ms. Blackwell has been unable to reach Capt. DeMartino to confirm his participation at the March 2009 meeting.)

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Next Steps

The services subcommittee decided that the February 24, 2009 meeting will be face-to-face rather than webinar format and a room at NIH will be reserved. (Note: In the intervening weeks, the subcommittee members chose to hold the February 24, 2009 meeting in webinar format.)

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Comments/Questions/Other

Dr. Susan Daniels was introduced as the new Deputy Director of the Office of Autism Research Coordination and acted as the Designated Federal Official for the subcommittee meeting.

The subcommittee also discussed Dr. Bonnie Strickland's article on the health care experiences of children with ASD, A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006, which appeared in the December issue of Pediatrics. Dr. Strickland described the results of the survey which examined health care experiences and family impact when raising a child with ASD. Results of the survey showed that children with autism had far more unmet health care needs and had to delay or forgo care much more frequently than did children with other special health care needs. Parents of children with autism were also more likely to have to stop work to care for their child and to experience financial problems.

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Action Items

Dr. Hann then reviewed the action items from the meeting which were as follows:

  • Ms. Blackwell and Mr. Grossman will meet in early January to review the RFI responses and revise categorization if necessary.
  • Subcommittee members will review the existing ASD Services Roadmap document and submit suggested revisions or additional content by January 23.

Meeting Adjourned

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Certification

These minutes of the December 10, 2008 IACC Services Subcommittee were approved by unanimous vote of the IACC Services Subcommittee on February 24, 2009.

We hereby certify that the foregoing meeting minutes are accurate and complete.

Ellen Blackwell /s/
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
Lee Grossman /s/
Lee Grossman
Services Subcommittee Co-Chair
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