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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Conference Call and Webinar on September 19, 2012

The IACC's Subcommittee for Services Research and Policy (also referred to as "the Subcommittee") convened a conference call on Wednesday, September 19, 2012, from 10:00 a.m. to 2:00 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Denise Dougherty, Ph.D., and David Mandell, Sc.D., Co-Chairs , presided.

Participants:

Denise Dougherty, Ph.D., Co-Chair, Agency for Healthcare Research and Quality (AHRQ); David Mandell, Sc.D., Co-Chair, University of Pennsylvania; Gemma Weiblinger, M.A., Designated Federal Official, National Institute of Mental Health (NIMH); Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA‑D, JB Autism Consulting and Autism Society; Anshu Batra, M.D., Our Special Kids; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Jose Cordero, M.D., M.P.H., University of Puerto Rico; Jan Crandy, Nevada State Autism Treatment Assistance Program; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); John P. O'Brien, M.A., Centers for Medicare & Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF)

Roll Call and Opening Remarks

Ms. Gemma Weiblinger welcomed the Subcommittee members to the meeting, conducted roll call, and then turned the meeting over to Dr. Denise Dougherty and Dr. David Mandell to discuss the update to the Strategic Plan.

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Review of Subcommittee Charge

Dr. Mandell stated that the Subcommittee for Services Research and Policy would be addressing Questions 5 and 6 of the update to the Strategic Plan. After discussion with Dr. Dougherty, Ms. Weiblinger, and Dr. Elizabeth Baden of the Office of Autism Research Coordination (OARC), he proposed a plan for drafting the update. Dr. Mandell added that the Subcommittee would need to determine which external experts to invite to participate in the updating process during the October 29, 2012, IACC workshop, and which Subcommittee members would be responsible for helping to develop the chapters' sections. Several members volunteered.

Dr. Mandell then read the Subcommittee's charge. Dr. Mandell noted that the Subcommittee should plan to have a bulleted draft completed by the October 29, 2012, workshop. To better facilitate the updating process, Dr. Mandell suggested that the subject matter of Questions 5 and 6 be considered together, and divided into smaller topic areas, which would cover issues related to the entire lifespan. For each topic area, Subcommittee members would work with external experts to produce a draft update to share at the workshop. Dr. Mandell noted that external experts had to be invited within the next few days due to the short timeline. There was some discussion concerning how many experts would be invited for each of the five topic areas.

Dr. Mandell set out the proposed timeline. Material for the Update would be due to the Subcommittee co-chairs in bullet form by October 15, 2012. The Chairs would synthesize these sections into a draft for the two chapters, hopefully with time to get feedback from the Subcommittee. The draft would then be sent to OARC staff by October 22, 2012. The draft would be presented and discussed at the workshop on October 29, 2012. Feedback and recommendations from the workshop would be incorporated. A completed draft would be needed to be approved by the Subcommittee by the first week of December. Then it would go the full Committee after that. The aim was to submit the update to Congress by the end December 2012.

Dr. Mandell noted that focus should be placed on the past 18 months when addressing the questions "What do we know?" and "What do we need to know?" for each topic area. He added that the 2010 IACC Portfolio Analysis Report and the 2011 Summary of Advances in ASD Research could help answer these questions. Drafts of Questions 5 and 6 should be approximately 2-4 pages each. Ms. Alison Singer noted that, all of the information and expertise gleaned at the October 29, 2012, workshop could also be utilized when writing the 2013 Strategic Plan.

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Discussion of Topic Areas

Dr. Mandell thanked Dr. Dougherty for leading the development of five proposed topic areas and presented the topic areas to the Subcommittee. The proposed topic areas were access and coverage (including transition to adulthood); quality of care (including coordination of care and implementation); education/employment; family support; and comparative effectiveness and patient-centered outcomes research. Subcommittee members agreed with the proposed topic areas, and recommended that dissemination and implementation be considered within each topic area as well. The external experts would be asked to address these topic areas as they related to children and adults. Each expert would address the knowledge gained and remaining research needs. In addition, within each of these five topics, several cross-cutting themes regarding disparities would be considered including racial, ethnic, socio-economic and geographic/residence disparities. Mr. Scott Michael Robertson asked how assistive technologies and other issues of technologies fit into these five areas. Dr. Mandell saw assistive technologies as being integrated into all five topic areas, whereas Dr. Dougherty saw them more in a medical/healthcare sense. Transition and professional development also were raised as themes that cut across the five topic areas.

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Determination of External Experts

Dr. Mandell noted that each Subcommittee member should have received a document with potential external experts submitted by Subcommittee members prior to the meeting. Dr. Mandell stated that Dr. Dougherty had organized the experts within the five topic areas, and but these areas were open to discussion. Experts would act as Working Group members during the writing process, helping to update items in their topic area. During the workshop, the experts would participate in breakout groups, helping the Subcommittee refine the draft document. It was decided that the Subcommittee would plan to have 15 invited experts – three per topic.

For the topic area of access and coverage, Subcommittee members discussed inviting Bonnie Strickland, Ph.D., (HRSA); Susan Parish, Ph.D. (Brandeis University); Mark Friedlander, M.D. (Aetna); Christine Hunter; Pia Newman (Pennsylvania Department of Public Welfare); Lorri Unumb (Autism Speaks); and William Johnson, M.D. (University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School) to serve as external experts during the updating process.

For the topic area of quality of care, Subcommittee members discussed inviting Aubyn Stahmer, Ph.D. (University of California, San Diego); with Lauren Brookman-Frazee, Ph.D. (University of California, San Diego); James Perrin, M.D. (Harvard Medical School); Connie Kasari, Ph.D. (University of California, Los Angeles); Christina Nicolaidis, M.D. (Oregon Health & Science University); Donna Noyes, Ph.D. (New York State Department of Health); Doreen Granpeesheh, Ph.D.; Audrey Griesbach, M.D.; a representative from the Ohio Center for Autism; Phillip Strain, Ph.D. (University of Colorado, Denver); Sam Odom, Ph.D. (University of North Carolina); and Catherine McClain, M.D. (University of New Mexico) to participate as external experts.

For the topic area of education/employment, Subcommittee members discussed inviting Dr. Phillip Strain and/or Dr. Sam Odom; Colleen Wieck, Ph.D. (Minnesota Governor's Council on Developmental Disabilities); Peter Gerhardt, Ed.D. (McCarton Upper School); Paul Shattuck, Ph.D. (Drexel University); Cathy Pratt, Ph.D. (Indiana University); Denise Resnik (Autism Speaks); Zach Warren, Ph.D. (Vanderbilt University); Kelly Henderson; a representative from the Department of Education; and Valerie Paradiz, Ph.D. (Autism Research Institute) to serve as external experts.

For the topic area of family support, Subcommittee members discussed inviting Ann Turnbull, Ed.D. (University of Kansas); Paul Law, M.D. (Kennedy Krieger Institute); Elisabeth Dykens, Ph.D., (Vanderbilt University); Mark Durand, Ph.D. (University of South Florida); Mark Woodsmall Esq. (Special Education/Special Needs Law); Areva Martin Esq. (Special Needs Network); Brad Trahan (RT Autism Awareness Foundation,); Lori Goring (Autism Speaks); and Scott Badesch (Autism Society) to participate as external experts.

For the topic area of comparative effectiveness and patient-centered outcomes research, Subcommittee members discussed inviting Anne Beal, M.D. (Patient-Centered Outcomes Research Institute); Lisa Simpson, MB BCh (AcademyHealth); Lisa Prosser, Ph.D. (University of Michigan); Kathleen Thomas, Ph.D., (University of North Carolina); Kathleen Hebbeler, Ph.D. (SRI International); Tristram Smith, Ph.D. (University of Rochester Medical Center); and Ronald Leaf, Ph.D. (Autism Partnership) to serve as external experts.

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Assigning Subcommittee Member to Topic Areas

Mr. Robertson volunteered to lead the education/employment group. Dr. Sally Burton-Hoyle volunteered to lead the family support group, and both Dr. James Ball and Ms. Singer offered to help with that group. Ms. Jan Crandy and Mr. John O'Brien offered to lead the access and coverage group, and Ms. Idil Abdull volunteered to help with the group. Dr. Mandell volunteered to lead the quality of care group and both Ms. Anshu Batra and Ms. Laura Kavanagh volunteered to help. Dr. Dougherty offered to lead the comparative effectiveness and patient-centered outcomes research group, and both Ms. Crandy and Ms. Abdull offered to support the group.

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Discussion of Draft Template for Updates

Dr. Mandell explained that the Subcommittee would use the "2011 Addendum" sections of the 2011 Strategic Plan as a guide for the structure of the 2012 Update and reference the "What do we know?" and "What do we need to know?" sections to ensure that all topics were covered. Under these two headings, the responses needed to address the following points for each of the five topic areas: key findings or discoveries, and why these were important; lessons learned from the 2011 Summary of Advances and the 2010 Portfolio Analysis ; newly funded research that addressed gap areas; remaining gap areas, and ways to address these gaps; and the needs of the community. 

Dr. Mandell discussed the proposed timeline for updating Questions 5 and 6. OARC staff would quickly invite all of the identified experts. During the week of September 24, 2012, Subcommittee members and external experts would begin to work on the assigned topic areas, with the goal of sending updates to the Subcommittee co-chairs by October 15, 2012. The Subcommittee co-chairs would then compile these updates into two chapters, and submit these to OARC by October 22, 2012, for distribution at the October 29, 2012, workshop. During the workshop, attendees would refine, add to, and change the draft as necessary, with the goal of having a near-final draft for Subcommittee review by November 15, 2012. Subcommittee members' comments would be due to the co-chairs by November 21, 2012. A Subcommittee conference call would be held in late November 2012 to approve Chapters 5 and 6 of the 2012 Strategic Plan Update . Dr. Mandell noted that while it is a really tight timeline, he and Dr. Dougherty hoped that dividing the questions into five topic areas would make the tasks possible in the shortened timeframe. Dr. Mandell, Dr. Baden, and Ms. Weiblinger would contact the volunteer group leaders to ensure that they had the necessary support to proceed. Dr. Mandell thanked everyone for their participation and hard work on this important task.

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Adjournment

The conference call was adjourned at 2:00 p.m.

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Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/ November 16, 2012
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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