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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Conference Call on August 10, 2010

The Interagency Autism Coordinating (IACC) Services Subcommittee held a teleconference on Tuesday, August 10, 2010 from 2:00 p.m. to 4:00 p.m. Eastern.

Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society of America; Susan A. Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Della Hann, Ph.D., Office of Autism Research Coordination (OARC) , NIMH; Rosaly Correa-de-Araujo, M.D., Ph.D., (representing Henry Claypool), Office on Disabilities; Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Sharon Lewis, Administration for Children and Families; Christine M. McKee, J.D.; Ari Ne'eman, Autistic Self-Advocacy Network; 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).

Meeting Proceedings

The Services Subcommittee met on August 10, 2010 to discuss the planning of the Services Workshop to be held on November 8, 2010 at the Rockville Hilton. Dr. Susan Daniels welcomed the Services Subcommittee members and asked the group to consider the structure of the meeting and the desired speakers. After roll call, Ms. Ellen Blackwell noted that she and her Services Co-chair Lee Grossman had been brainstorming ideas for the meeting which Mr. Grossman began to discuss. Noting that the workshop was intended to generate public policy recommendations for Health Secretary Kathleen Sebelius, Mr. Grossman described their proposed format; the workshop would be structured around the six priorities for ASD services identified by the public in the 2008 Request for Information: Adults, Community, Family Support, Early Intervention/School Services, Providers, and Infrastructure.1 Mr. Grossman and Ms. Blackwell had created a draft agenda with proposed speakers and key themes to be discussed. These included (1) systems change over the next decade, (2) cost effectiveness, and (3) building a seamless system of quality services and supports across the lifespan.

Ms. Blackwell asked whether recommendations could also be made to the Secretary of Education and noted that most states were struggling with financial crises that were affecting services for people with disabilities. Any policy recommendations should be crafted with this context in mind, she said. Mr. Grossman commented on the difficulty in covering all aspects of ASD services during a one-day meeting. He said that input from the subcommittee would be needed to determine how follow-up to the meeting would be handled and he then reviewed the draft agenda which had been distributed to the subcommittee. The meeting would start with an introductory session featuring Dr. Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and Dr. Bill East, Executive Director of the National Association of State Directors of Special Education (NASDSE). Ms. Blackwell said that these two speakers would be able to frame the current fiscal climate and describe the future of disability services in the next ten years. She also recommended including Dr. Charlie Lakin, a University of Minnesota professor who leads the National Core Indicators project, which measures how well the public system aids adults with developmental disorders. Dr. Lakin is also involved in developing modules for a project training direct service workers, including one specifically about ASD.

Dr. Sharon Lewis endorsed Dr. Lakin, saying that she knew him through his work on a longitudinal project for the Administration on Developmental Disabilities. Ms. Blackwell said that he could provide an overview of how the economy is changing and what the outlook is like for ASD services. Dr. Larke Huang questioned whether the IACC had a good sense of the system of care needed throughout the developmental lifespan and Ms. Blackwell asked that the presentation she made at the November 2008 IACC meeting on the topic be redistributed to the committee. Dr. Huang asked how health care reform would work into the overall services framework and said that they must present clear guiding principles for what services should look like across the lifespan. Mr. Grossman agreed, saying that this had been the approach they had taken when drawing up the draft agenda. Ms. Lewis noted that the introduction lacked discussion on employment which is an important part of the framework. Mr. Ari Ne'eman said that addressing employment issues would be an important part of any model for systems change or capacity building. Continuing through the draft agenda, Mr. Grossman recommended Mr. Michael Strautmanis and Mr. Jeff Crowley, both from the White House, to speak about adult issues.

Ms. Blackwell said that they had envisioned each of the six topic areas to have two or three members who would present followed by a question and answer session. She asked the subcommittee for their thoughts on the set-up. Ms. Denise Resnik stated that it would be important to understand what they wanted to accomplish through the meeting and then choose speakers based on this goal. She asked whether it might be more effective to select one service area and identify two or three pressing issues that have the best chance of translating into meaningful policy changes. Ms. Blackwell agreed, providing the example of incorporating self-direction - even though it has been shown to be cost-effective, only a few states use self-direction in their programs. Mr. Grossman said that another option would be to select speakers based on their three key themes. He emphasized that they wanted strong thought leaders rather than people simply presenting on their own activities. Dr. Cathy Rice said that the workshop needed more structure and recommended expanding the key themes to goals, describing the goals and the associated challenges, and then generating specific recommendations for achieving the goal. She said that they needed to identify timely, relevant topics where the greatest impact could be made in the shortest amount of time. It would also be necessary to identify what steps would be needed after the workshop to synthesize the information, she said.

Dr. Huang advised connecting their recommendations with the objectives outlined in Questions 4 through 6 in the IACC Strategic Plan for ASD Research to generate more buy-in from the committee as a whole. Mr. Ne'eman disagreed, saying that policy recommendations to the Secretary differed significantly from a research strategic plan. Ms. Blackwell noted that the workshop could be organized around the three key themes rather than the six topic areas from the RFI and Dr. Rice recommended defining what is meant by each theme and topic area that would be included in each. She presented the possibility of approaching each theme by three life stages: early childhood, school age, and adults. They could then identify the goal for each age group and discuss the opportunities, challenges, and recommendations, she said. For example the goal for systems change in adulthood might be seamlessness of care. They could then select speakers based on this goal.

Ms. Resnik supported the idea of the thematic structure and the alignment with the Strategic Plan. Dr. Lewis registered her concern about the ambitious scope of the agenda and suggested focusing on one narrower topic such as service provision. She noted they would have to organize the workshop across the life course to acknowledge the interdependency between stages. Ms. Blackwell cautioned that she did not want to lose sight of addressing services infrastructure. Mr. Ne'eman said that a lifespan approach would allow them to address the different service systems people are accessing across their lives. Ms. Lewis cautioned that they may have a wide-ranging conversation that fails to drill down to specific system points that could be addressed. Mr. Ne'eman said that one day did not allow for meaningful conversation and that planning the follow-up would be critical. He recommended splitting into panels to generate recommendations as they had during the 2010 update to the Strategic Plan, but warned against becoming a subsidiary of the Plan. Ms. McKee asked the subcommittee whether they wanted to do something parallel to the 2008 Services Roadmap and commented on how daunting it was to try to tackle the specifics of such a large problem. Ms. Resnik said that it would be important to identify what they hoped to get out of the workshop and to manage expectations about what can be achieved. Ms. Rice asked the subcommittee to consider whether the workshop was meant to be an end unto itself or was just the start of a larger process. Mr. Grossman said that it would be the beginning of a process which they must present for the approval of the full IACC. Ms. Blackwell noted that speakers must be invited soon to allow a proper amount of time. Ms. Lewis asked the group to consider what the goal of the day would be and Ms. Blackwell said that the introductory session was intended to provide a big picture of the "lay of the land" for ASD services.

Mr. Ne'eman recommended providing briefing sheets to the IACC that would give a picture of the current landscape and identify low-hanging fruit (goals that could easily be achieved). Dr. Daniels told the committee that the Office of Autism Research Coordination staff could help to format and collate such briefing documents but that the office could not work independently to develop these for the subcommittee. Ms. Blackwell liked the idea of the briefing materials because it allowed more time to look at best practices. She described possible recommendations related to universal assessment. Ms. Resnik offered to help on the adult background materials. Mr. Ne'eman asked if their recommendations could be made to the Secretary of Education and Dr. Daniels said that she would check on this, but that since the IACC is not formally advisory to the department of Education, it may only be possible to send the recommendations to the Department of Education as an informational update. Mr. Ne'eman recommended having a speaker from the National Education Inclusion Center to address why children with ASD are disproportionately segregated. Ms. Blackwell said that she wanted to talk with Dr. East about state education models that could be presented. She said that there had been success infusing school-based health centers with services for ASD, which supports the health-home model. Ms. Lewis asked if they planned to address the medical model of ASD services or the community, education, community services model and Ms. Blackwell clarified that the health home model was different than the medical home model. Dr. Lewis said she would put together additional names for consideration as speakers. Dr. Daniels noted that even if formal recommendations could not be made to the Secretary of Education, the information could be delivered through other channels.

Ms. McKee said she was still trying to decide whether the workshop would be better organized by theme or topic area. Dr. Rice asked if the topic areas could be made into questions similar to the ones in the Strategic Plan. For example, diagnosis might be framed as: How do individuals and communities come to understand that ASD is present? Dr. Huang supported framing the topics as questions and asked that they continue to consider organizing by lifespan to follow the way a family must naturally approach accessing services. She cautioned that deviating too much from the Strategic Plan would make finding resources harder. Mr. Ne'eman said they had an obligation to address policy issues, which were separate from services research. Ms. McKee questioned whether it would be valuable to have a strategic plan specifically for services. Mr. Ne'eman said that selecting speakers could be done at the September 13th teleconference but Ms. Blackwell said this would not allow enough notice. Dr. Daniels asked the committee to provide more clarity on structure – would the workshop be organized around the three themes, the six subject areas identified in the RFI, or by life stages? Ms. Blackwell advised organizing the workshop around the key themes, noting they had the most flexibility, and advised infusing lifespan issues throughout the discussion. Mr. Grossman noted that there were several other major autism conferences just before November 8th and Dr. Daniels said that it was an option to change the date to Spring 2011 if they felt it would improve the quality of the conference. Ms. Blackwell and Mr. Grossman objected to moving the date, saying that a lot of work had already been done and that they needed to address the urgency felt in the community. Ms. Blackwell suggested putting together a list of speakers to vote on and Dr. Daniels said that discussion of the candidates could be done by e-mail to expedite the process. Dr. Hann stated that the structure of the workshop was still under discussion but that the group had agreed to organize a potential strategic planning/recommendations document by the three themes with a lifespan perspective. She said that in Dr. Daniels absence she would send a note to the subcommittee requesting any additional comments by a set date.

Dr. Huang asked Ms. Blackwell what was meant by "cost-effective" as it was used in the agenda and she explained that it meant a way for states to deliver services that were both economical and high quality. She said that a better term might be "cost-efficient" – practices and procedures that allow health providers to do more with less. Dr. Huang explained that SAMHSA looks at "cost-effectiveness" through the lens of what will be financed by Medicaid. Mr. Ne'eman noted that while the services strategic plan should be organized by the lifespan, this might not be desirable for the workshop because of the inherent overlap. Dr. Rice advocated using the three themes for the workshop and discussing the structure of the services strategic plan at the September teleconference. Mr. Ne'eman clarified that services research would still be part of the research strategic plan and that a services strategic plan would be for policy recommendations. Dr. Daniels asked the co-chairs to revise the draft workshop agenda based on the subcommittee's discussion and Ms. Blackwell also agreed to begin developing a presentation about the workshop for the full IACC. The meeting was then adjourned.

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Certification

These minutes of the IACC Services Subcommittee were approved by the Subcommittee on November 29, 2010.

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

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

1 IACC 2008 Request for Information on Services

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