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Minutes of the Joint Conference Call of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee and the Subcommittee for Planning the Annual Strategic Plan Updating Process on June 18, 2010

The Interagency Autism Coordinating (IACC) Services Subcommittee and Subcommittee for Planning the Annual Strategic Plan Updating Process held a conference call on June 18, 2010, from 10:00 a.m. to 11:45 a.m.

Participants: Ellen W. Blackwell, M.S.W., Co-Chair of the Services Subcommittee, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair of the Services Subcommittee, Autism Society; Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan A. Daniels, Ph.D., Executive Secretary of the Services Subcommittee, Office of Autism Research Coordination (OARC), NIMH; Della Hann, Ph.D., Executive Secretary of the Planning Subcommittee, Office of Autism Research Coordination (OARC), NIMH; Geraldine Dawson, Ph.D., Autism Speaks; Gail R. Houle, Ph.D., Department of Education; Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Jennifer G. Johnson, Ed.D., Administration for Children and Families; Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke; Christine McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise D. Resnik, Southwest Autism Research and Resource Center (SARRC); Cathy Rice, Ph.D., (representing Ed Trevathan, M.D., M.P.H.), Centers for Disease Control and Prevention (CDC); Alison Tepper Singer, M.B.A, Autism Science Foundation (ASF); Marjorie Solomon, Ph.D., M.B.A., University of California, Davis; Bonnie Strickland, Ph.D., (representing Peter van Dyck, M.D., M.P.H.), Health Resources and Services Administration (HRSA); and Ed Trevathan, M.D., M.P.H., Centers for Disease Control and Prevention (CDC).

Welcome and Introductions

The Interagency Autism Coordinating Committee held a teleconference to discuss the planning for the 2010 IACC Scientific Workshop. Members from both the IACC Services Subcommittee and the Subcommittee for Planning the Annual Strategic Plan Updating Process participated in the call. Dr. Insel welcomed the members to the joint meeting and noted that the full committee had agreed to focus the 2010 Scientific Workshop on ASD services. Other topics that had been discussed such as environmental risk factors and therapeutic development were already being covered by other meetings. The IACC agreed to send representatives to report back on these events. Dr. Insel informed the group that the Scientific Workshop will be held on November 8, 2010 at the Rockville Hilton. He then asked for input from the members on the intent of the Workshop: Would it directly relate to updating the Strategic Plan for ASD Research or would it have a more general focus on ASD services?

Planning the Fall 2010 IACC Scientific Workshop on Services

Mr. Lee Grossman asked whether the conference would include public participation and Dr. Hann said that the meeting would be open to the public and that the committee would decide on the level of public participation. Mr. Grossman said that services research was examined in depth during the Scientific Workshop held in fall 2009 and that he felt the 2010 Workshop should focus more on the practical aspects of fixing a broken system of care for people with ASD in the U.S. The IACC should use its power to inform the HHS Secretary on service provision needs in the community, he said. Mr. Ari Ne'eman said that he wanted to see the IACC fulfill the broader nature of its mandate by addressing policy issues in addition to research. He said that the crises brought on by current financial hardships provided a unique opportunity to put forward focused recommendations to the Secretary on ASD service provision.

Ms. Blackwell described her vision for the Scientific Workshop which would include presentations from leaders of the nation's developmental disabilities directors, special education directors, and Medicaid directors. Ms. Singer noted that research should inform policy and practice, so should not be overlooked during the Workshop. She recommended looking at cutting-edge services research from researchers like Dr. Connie Kasari, Dr. Paul Shattuck, and Dr. David Mandell. Ms. Blackwell reminded the group that they had discussed hearing a presentation on services at every full IACC meeting, so this would be an additional forum to hear about services research. Ms. Singer restated her feeling that policy and practice must be addressed from an evidence-based standpoint and Mr. Grossman noted that he felt enough services research had been done to act on in the community.

Dr. Geri Dawson said that a balance of both research and policy would be needed to affect large-scale systems change. Research would inform priorities and reveal effective strategies for addressing the crisis in ASD services provision, she said, and recommended looking at other medical conditions where large-scale system changes have been successfully made. Mr. Ne'eman added that research should be the input but that policy and systems changes should be the result. He said he wanted to ensure that the IACC went beyond using the typical medical research model.

Dr. Insel reminded the members of the IACC's responsibilities outlined in the Combating Autism Act – to develop and annually update a strategic plan for ASD research and to monitor federal activities related to ASD in order to make recommendations to the HHS Secretary. He said that the IACC had not taken full advantage of their ability to make recommendations to the Secretary during a period of crisis or dramatic change and asked if they were comfortable using the Workshop to develop recommendations rather than focus on revisions to the Strategic Plan.

Dr. Dawson said that research is needed to define the nature of the systemic problems that exist (i.e., ethnic disparities, specific health risks for aging individuals, etc.) and should be used to guide recommendations. Research will also identify which strategies for systems change have been effective in the past and which emerging strategies show promise (such as telemedicine). Mr. Ne'eman said that the committee needed to hear state case studies as well, such as the adult service provision model from Florida. Dr. Marjorie Solomon said she liked the idea of using other disorders as a model and Dr. Dawson said that a speaker on heart disease and dementia had spoken at a recent workshop on aging and autism. In treating these disorders, the most effective programs focused on training nurses assistants. Lessons about where intervening in the system was most effective may be informative for ASD, she said. Ms. Blackwell said that she preferred to focus on improving quality of life through services and supports rather than care and Dr. Dawson clarified that she had not meant one at the exclusion of the other. Ms. Blackwell spoke about Dr. Charlie Lakin's work on training direct service workers and mentioned the environmental scan on services published by the Centers for Medicare & Medicaid Services (CMS) in March 2010.1

Dr. Jennifer Johnson said that it would be important to examine how different populations are succeeding in the education and employment systems and to continue to track individuals across the lifespan. Dr. Cathy Rice said that if the Workshop is used to inform policy and practice and not to update the Strategic Plan, they must revisit how the IACC can accomplish this and what the final product would look like. Mr. Ne'eman recommended structuring the Workshop around the four broad policy goals identified in the Americans with Disabilities Act: quality of opportunity, full participation, economic self-sufficiency, and independent living. Dr. Insel asked the Planning Subcommittee whether they were comfortable letting the Services Subcommittee take the lead planning the Workshop. Dr. Solomon described her ideal structure – a speaker would open the event speaking about the enormity of the problems in the service system, someone would then speak to the specifics, and researchers in the field would present during the afternoon. She noted that the synergy between researchers and individuals working within the service system would be important. Dr. Dawson agreed that the Services Subcommittee should have the opportunity to plan the Workshop.

Ms. Redwood said that she would like to hear from Ms. Blackwell and others who were involved in updating the services section of the Strategic Plan about whether further revisions were needed. She also emphasized the importance of providing a document to the Secretary so that there would be a concrete product as a result of their efforts. Ms. Blackwell said that the Services Subcommittee would be happy to plan the Workshop and that they would come to a consensus on integrating research with real-world implementation. She said that there had been an extensive rewrite of the services portion of the Strategic Plan last year and that it should remain stable in order to track progress. Dr. Walter Koroshetz said that research must address issues around access to services. Ms. Singer said that the Workshop could be used to identify gaps in the Plan, which had been difficult for the committee in the past. She said that the CMS indicator mentioned by Ms. Blackwell would be helpful.

Dr. Insel asked the members to discuss the deliverable to the Secretary and Dr. Rice asked whether the Services Roadmap would be of use as a starting point. Mr. Ne'eman said that he hoped the product would be immediate recommendations about systems change and policy action. Ms. Blackwell said that she felt the Services Roadmap might not be useful as a starting point for the Workshop but that the Services Subcommittee would discuss the document in the future. Ms. Denise Resnik described the process that her organization, the Southwest Autism Research and Resource Center (SARRC), was undergoing to prepare for a Congressional briefing in July on ASD services. They had convened a think tank who then worked on briefing materials and then held a national town hall meeting to hear about service priorities from the public. From this they identified important early and long-term public policy issues they wanted to address. She said that this might be a good model from which the IACC could learn. Mr. Grossman said that he saw the Workshop as an opportunity to bring different perspectives together in an attempt to work toward meaningful and significant systems change. Mr. Ne'eman said that the committee should also consider the follow-up process after the Workshop to ensure a quick turnaround for the recommendations to the Secretary. Mr. Grossman agreed that follow-up would be critical.

Dr. Insel asked Ms. Blackwell and Mr. Grossman if they could pull together a proposal for the structure and major themes of the Workshop. This could then be presented to the full IACC at the July 16, 2010 meeting. He noted that the Department of Health and Human Services and the White House were very receptive to the IACC's input and that they should use this opportunity to identify key issues and potential solutions within the service system. Ms. Blackwell recommended Dr. Bill East, who leads the special education directors, to speak to the IACC about early intervention and education services. Dr. Gail Houle said that she would also be happy to speak about education and access to early intervention services. Dr. Dawson spoke about innovative work going on to promote access to early intensive intervention and suggested building this into their recommendations. Dr. Houle noted that the committee had not fully explored issues around access to the early intervention system and Dr. Dawson said that addressing these issues could be considered "low-hanging fruit." Dr. Dawson also said that it was important to highlight the medical issues that people with ASD experience throughout their lifespan. Ms. Blackwell mentioned the medical home model which allows better access to care. Dr. Jennifer Johnson noted that young children who are identified with ASD are often removed from their setting because it lacks the appropriate supports. This runs counter to the idea of providing care in a "natural environment," defined in Part C of the Individuals with Disabilities Education Act (IDEA).

The call participants agreed that Ms. Blackwell and Mr. Grossman would generate ideas for the Workshop and Mr. Ne'eman asked that lifespan issues be a cross-cutting theme. Mr. Grossman agreed that the adult service sector should not be singled out and noted that it inherits the failures of all the previous systems.

Ms. Redwood asked how the committee would be informed about other workshops taking place such as those on environmental risk factors being held by the National Institute on Environmental Health Sciences (NIEHS) and pharmaceutical development being coordinated by Autism Speaks. Dr. Insel noted that the Autism Speaks meeting would be held in early 2011 and said that the full committee should discuss how to best report back. He noted that the Autism Centers of Excellence would be meeting the following week and that someone involved could report at the next IACC meeting in July. Ms. Resnik said that she would report on the Congressional briefing on July 15, 2010, as well as a recent housing study conducted by SARRC. Mr. Grossman noted that the Autism Society would be holding their annual conference in Dallas, Texas, in July. The conference would include a day-long symposium on environmental health research, information on continuing medical education, and a town hall meeting discussing changes in the DSM-5. Mr. Ne'eman stated that a retreat-style conference for people with ASD called Autreat would be held the following week.

Dr. Insel suggested conducting a round-robin update from the IACC members at the next meeting. Dr. Hann said that this might be difficult due to time constraints but that they would build this into a future meeting. With that Dr. Insel thanked the committee and asked them to forward any ideas about the Workshop to Ms. Blackwell and Mr. Grossman. The meeting was then adjourned.

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Certification

These minutes of the IACC Services Subcommittee and Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the members of the Subcommittees on July 26, 2010.

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
Thomas Insel /s/
Thomas Insel, M.D.
IACC Chair
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References

1 Centers for Medicare & Medicaid Services. (March 2010). Autism Spectrum Disorders (ASDs) Services: Final Report on Environmental Scan This link exits the Interagency Autism Coordinating Committee Web site (PDF – 2 MB)

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