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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5 and 6 Planning Group Subgroup on Access and Coverage Conference Call on October 4, 2012

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5&6 (Access and Coverage) Planning Group convened a conference call on Thursday, October 4, 2012.

In accordance with Public Law 92-463, the meeting was open to the public. John O'Brien, M.A., and Jan Crandy, Co-Chairs, presided.

Participants:

John P. O'Brien, M.A., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Jan Crandy, Co-Chair, Nevada State Autism Treatment Assistance Program; Gemma Weiblinger, M.A., Designated Federal Official, National Institute of Mental Health (NIMH); Idil Abdull, Somali American Autism Foundation; Elizabeth Baden, Ph.D., Office of Autism Research Coordination (OARC), (NIMH); Bonnie Strickland, Ph.D., Health Resources and Services Administration (HRSA); LCDR Deidre Washington-Jones, (HRSA)

Roll Call and Opening Remarks

Ms. Gemma Weiblinger welcomed participants to the call to discuss the update of Questions 5 (Where can I turn for services?) and 6 (What does the future hold, particularly for adults?) of the IACC Strategic Plan. She said that this Planning Group would focus on access and coverage. Mr. John O'Brien called roll. Dr. Elizabeth Baden provided an overview of the work of the Subcommittee and this group.

Dr. Baden said that the IACC Strategic Plan for 2012 was being updated in the form of an addendum, which would address advances and gaps in autism research since the last Plan had been issued in January 2011. The Subcommittee for Services Research and Policy (SRP) divided these questions into five topic areas—access and coverage; quality of care; education and employment; family support; and comparative effectiveness research and patient-centered outcomes research. Ms. Jan Crandy added that they were addressing each question across the lifespan. Mr. O'Brien reviewed the charge and the proposed process/template. The charge was to identify new research past 18 months and any gap areas that had emerged since the last update. The experts on this call would provide input to the Subcommittee to help answer these questions. This group also would develop specific questions to guide a research agenda for access and coverage.

Mr. O'Brien said that regarding collection of the relevant research from the last 18 months, he had sent everyone a matrix with four columns. The first column was for identifying whether a research article was related to access or to coverage. The next column contained brief summaries of the lessons learned from that research. The third column was for the citation, and the fourth column was for questions not specific to the research reviewed but that might be needed around access and coverage.

Mr. O'Brien said that after members added relevant research, it should be sent by noon Thursday to Cindy Ruff (CMS), who would be responsible for compiling them, and sending them to the Subcommittee co-chairs. Because the experts for the group were not on this call, it was agreed that Ms. Crandy would contact Lorri Ununb (Autism Speaks), and Mr. O'Brien would contact Susan L. Parish, Ph.D., M.S.W. (Brandeis University).

Ms. Idil Abdull asked Mr. O'Brien to provide an overview of states with autism-specific access to coverage (mandatory or optional) based on CMS expertise. Mr. O'Brien said that the experts for this group would identify research to be added to the 2012 update, including Medicaid research questions. He said they had not compiled a list of Medicaid coverage for each programs. He added that there was also a need to know the outcomes for the individuals in those programs, whether for applied behavior analysis or other types of services. They also needed to know who was or was not getting services, which services were received, and whether those services work and for whom.

Mr. O'Brien agreed with Ms. Abdull that they needed to know how many individuals on Medicaid had autism; not every state had a surveillance system. He said that there were data that might be available on a state-by-state basis. Ms. Abdull said that in terms of disparities, the questions involving what we know and what barriers exist have been asked for years but have not been answered. Disparities had to be addressed. Mr. O'Brien agreed, and asked Ms. Abdull to add those questions to the template.

Dr. Bonnie Strickland asked how many research questions could be posed. Mr. O'Brien said that the 2011 Strategic Plan included a fairly brief description of the new research areas (about 1 ½ pages) and another half page on research gaps. Dr. Baden said that as a general guideline, should be about 2 pages. However, Questions 5 and 6 might be a bit longer because it had been broken into five topic areas.

Mr. O'Brien said that members could contact him or Ms. Crandy with follow-up questions. He confirmed that the group's first deadline was October 11, 2012.

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Adjournment

The call was adjourned.

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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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