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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Conference Call on August 27, 2013

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy convened a teleconference on Tuesday, August 27, 2013, from 2:00 p.m. to 3:53 p.m.

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

Participants:

Denise Dougherty, Ph.D., Co-Chair, Agency for Healthcare Research and Quality (ARHQ); David Mandell, Sc.D., Co-Chair, University of Pennsylvania; Susan Daniels, Ph.D., Executive Secretary, IACC, National Institute of Mental Health (NIMH); Idil Abdull, Somali American Autism Foundation; James Ball, Ed.D., BCBA-D; 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 O'Brien, M.A., Centers for Medicare & Medicaid Services (CMS); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Cathy Rice, Ph.D. (for Coleen Boyle, Ph.D.); Scott Michael Robertson, M.H.C.I., Autistic Self Advocacy Network; Alison Tepper-Singer, M.B.A., Autism Science Foundation

Welcome, Roll Call, and Opening Remarks

Dr. Susan Daniels opened the call by welcoming Subcommittee members and calling roll. Co-chair Dr. David Mandell also welcomed the participants to the call. He said that the primary purpose of the call was to address potential projects for two important topics ­ adult services and health disparities. Previously it had been proposed that the Subcommittee develop a services toolkit for adults with autism.

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Adult Services

Dr. Mandell noted that the meeting materials included a list of existing autism toolkits and resources developed by the Office of Autism Research Coordination staff. Dr. Sally Burton-Hoyle said that it was important to address access to supplemental security income at the state level. Ms. Laura Kavanagh asked whether the Subcommittee wanted to focus on national-level resources or to include state programs as well. Ms. Jan Crandy pointed out that they should avoid duplicating resources and toolkits that are already available, including at the state level. There was a discussion about the pros and cons of including state-level information.

Dr. Daniels asked the Group what form they thought this project should take - a webpage with a list of resources and links or a more interactive database. She added that the Subcommittee should consider the issue of the need to update a list or database. Mr. Scott Michael Robertson said that a list of resources would be more useful with description of the materials and resources available for each entry. He also asked how this project would differ from the material collected by Autism Now.This link exits the Interagency Autism Coordinating Committee Web site He suggested developing a guidebook to existing resources. Dr. Mandell asked Dr. Daniels what resources were available to the Subcommittee because this might determine, in part, the form of the end product. Dr. Daniels said that the Subcommittee members were the primary available resource. She added that OARC could create and maintain a webpage but the content would come from the Subcommittee. Dr. Mandell proposed that the Group could work on the project in steps; the first step might be to collect, organize, and annotate existing resources. Based on their experience with that step, they could identify next steps ­ perhaps filling in information gaps in existing resources. Dr. Daniels suggested identifying any existing resource lists, like the Autism Now resource.

Dr. Burton-Hoyle reiterated that individuals with autism and their families need information at the state level. There was a discussion about eligibility differences in states. Mr. Robertson suggested that they use the information-gathering process to identify resource gaps, such as driving and travel, and perhaps fill some of those gaps in the future. There was agreement that this was a reasonable approach. Subcommittee members would collect information on available resources for certain topics, which would be compiled and used to identify resource gaps. Dr. Mandell said that once they had a group of volunteers, they could decide how to divide the search for existing resources. Dr. Daniels reminded the Group that the full IACC would be working on the Strategic Plan during the fall, which would require many conference calls. Dr. Mandell, Dr. Burton-Hoyle, Ms. Kavanagh, Mr. Ball, Ms. Idil Abdull, and Mr. Robertson volunteered to participate in the project. Dr. Mandell asked to schedule a conference call in order to divide the research among the volunteers. Dr. Denise Dougherty said that she would check on any additional help from HRSA.

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Health Disparities

Dr. Mandell noted that the meeting materials included lists of projects related to identifying, understanding or ameliorating disparities among traditionally underserved groups. He asked the Group for ideas about the Subcommittee's role with regard to autism-related health disparities. Dr. Jose Cordero said that it was important to ensure that all communities had access to services. He added that early recognition was also a disparities problem. Ms. Abdull said that it's commonly accepted that there are health disparities but there had been little research on the subject, and no solutions have been proposed. Dr. Mandell suggested that the Subcommittee conduct a more detailed and nuanced assessment of existing/ongoing research to identify the gaps, and to suggest next steps. Ms. Abdull said that parents in underserved groups might be more receptive to autism information provided by community-based and culturally-appropriate organizations. However, she said that these organizations rarely get funding or other support from the federal or state government. Dr. Cordero agreed that there was a need for more healthcare providers within underserved communities. He said that there are factors that need to be addressed. First, are there measures of the disparities in terms of the early recognition of autism among ethnic/racial groups and also measures of changes in disparities? He suggested using large surveillance projects – such as the Autism and Developmental Disabilities Monitoring (ADDM) Network – to get a sense of the problem on a national level. The ADDM network is a group of programs funded by CDC to estimate the number of children with ASDs and other developmental disabilities living in different areas of the United States. Second, there is a need for measures of how long it takes for children with autism in minority groups to get a diagnosis and access to treatment – and a need to identify the barriers.

Mr. Robertson noted that various entities were developing resources that address cultural competency for the use of government agencies, private organizations, and services providers. Dr. Mandell said that the Subcommittee could produce a list of hypotheses about disparities that should be researched or observations of existing practices. He said such an IACC document could help to drive the research agenda. Ms. Lyn Redwood asked to include the subject of medical comorbidities, access to medical care, and provider education in the disparities discussion. Mr. Robertson said that there were two types of disparities to consider: disparities faced by minority or other underserved groups among those with autism and between those with autism and those without. Dr. Dougherty noted that there had been a panel discussion of medical comorbidities with presentations by experts at the July 9, 2012 IACC meeting. Dr. Daniels reminded the Subcommittee that the IACC had voted to create a Planning Group to address medical comorbidities and access to medical care for individuals with autism. Dr. Mandell expressed concern that by combining health disparities among underserved populations and medical comorbidities, neither of these topics would receive adequate attention. He proposed adding medical comorbidities as a separate topic to be addressed by the SRP Subcommittee, in addition to adult services and health disparities. Dr. Mandell asked Ms. Redwood to head the Subgroup within the SRP Subcommittee that would address medical disparities. Dr. Daniels cautioned that it might be confusing to have two separate Working Groups addressing the same issue, in terms of duplicating work and having multiple conference calls. She added that the Working Group requested by the full IACC had not yet been formed and did not have a defined mission. The requested Working Group would be under the Basic and Translational Research Subcommittee. Dr. Daniels also noted that there would be seven Working Groups to update each of the questions in the Strategic Plan – each having two calls in September and October. She said that OARC would not be able to support the workload of the Strategic Update groups and the SRP/BTR subgroups. Mr. Robertson and Ms. Redwood said that the SRP subgroups would be informal; they would gather information on healthcare access and medical comorbidities that would be considered by the full Subcommittee.

The SRP Subcommittee agreed to have two subgroups. Subgroup 1 would address adult services; Subgroup 2 would address medical comorbidities and health disparities.

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Next Steps

Dr. Mandell said that there would be a separate call for the adult services toolkit project, during which the subgroup would divide the workload. In addition, individual Subcommittee members would identify information on health disparities and medical comorbidities/healthcare access for discussion during the next SRP Subcommittee conference call. Dr. Mandell, Ms. Abdull and Dr. Cordero volunteered to address health disparities. Ms. Abdull asked that someone from HRSA and/or CMS be included in this Subgroup as well. The Subcommittee discussed possible dates and times for its next call. Ms. Singer volunteered to provide an update on safety/wandering at the next meeting/call. Dr. Burton-Hoyle volunteered to give a similar update on seclusion and restraint. Ms. Crandy requested that they Subcommittee also address the Health and Human Services Secretary's response (PDF – 86 KB) to an IACC letter on insurance coverage for autism.

Dr. Daniels summarized that the six agenda items for the next SRP Subcommittee call were: adult services, health disparities, medical comorbidities/healthcare access, an update on safety/wandering, an update on seclusion/restraint, and the HHS Secretary's response to the IACC let on insurance coverage.

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Adjournment

The call was adjourned at 3:53 p.m.

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Certification

These minutes of the IACC Subcommittee for Services Research and Policy were approved by the Committee.

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

Denise Dougherty /s/
Denise Dougherty, Ph.D.
Co-Chair, Services Research and Policy Subcommittee
David Mandell /s/
David Mandell, Sc.D.
Co-Chair, Services Research and Policy Subcommittee
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