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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Webinar and Conference Call on September 15, 2008

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a meeting on September 15th, 2008 from 9:30 a.m. to 10:30 a.m. EDT

Subcommittee Member Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society of America (ASA); Catherine Rice, Ph.D., (representing Norman Trevathan) Centers for Disease Control and Prevention (CDC); Christine M. Mckee, J.D.; Bonnie Strickland, Ph.D. (representing Peter van Dyck), Health Resources and Services Administration (HRSA); Denise Juliano-Bult, M.S.W., National Institute of Mental Health (NIMH), National Institutes of Health (NIH); and Alison Singer, M.A., Autism Speaks (AS)

Other Participants: Della Hann, Ph.D., Designated Federal Official, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Azik Schwechter, Ph.D., OARC, NIMH

Housekeeping Issues

Ellen Blackwell called for a vote to approve of the minutes from the June 13, 2008 meeting. The vote passed with a six voting ‘yes’, zero voting ‘no’, and zero abstentions.

Ellen Blackwell reminded the subcommittee that the IACC is a FACA committee, and as such, the meeting is public and being recorded.

Approved Mission/Vision Statements

Ellen Blackwell read the Services Subcommittee Vision and Mission that were approved at the July 15, 2008 IACC meeting.

Mission: To assess and improve services and supports for people with ASD

Vision: All people with ASD have the services and supports they need and desire throughout the lifespan to lead productive lives in the community and to reach their fullest potential
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Request for Information – Status

Autism Services RFI (NOT-MH-08-016) was sent out for public comment on August 1, 2008, and will close on Friday, September 15, 2008. Its purpose is to seek input from all Autism Spectrum Disorder (ASD) stakeholders about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD. To date, 71 public comments have been received. The subcommittee members acknowledged that the public should be active and send in their comments by Friday, September 19, 2008.

The subcommittee members inquired if the RFI deadline could be extended, and Ellen Blackwell responded that there was not enough time to let the public know about the extension.

The subcommittee members asked about what will be done with the responses that are received. Della Hann informed the subcommittee that the Office of Autism Research Coordination (OARC) will make the first attempt at organizing the responses, and then submit the results to the subcommittee chairs. In addition, the RFI responses will be redacted for personally identifiable information and posted on the IACC website. Once the responses to the RFI have been categorized, and individual responses posted on the web, the Services Subcommittee can review them and determine how best to use the information.

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November 2008 IACC Meeting – Services Presentation

Ellen Blackwell and Lee Grossman discussed a tentative agenda for the ASD Services presentation at the November 21, 2008 meeting of the full IACC. Ellen Blackwell will deliver a 30 minute introduction to services and supports for ASD. The introduction will be split between two age ranges, birth to 21, and the adult population. Presentations from two states, Pennsylvania and Connecticut, on their ASD programs will follow. Kathy Reddington, Autism Coordinator, of the Division of Autism Spectrum Services, for the Connecticut Department of Developmental Services, will speak on the state of Connecticut’s programs for ASD adults, and job placement. Nina Wall Cote, Director of the Bureau of Autism Services for the Pennsylvania Department of Public Welfare will speak about Pennsylvania’s Medicaid waiver, as well as a managed-care model that is currently in development. The next presentation will be from Cathy Pratt, Director of the Indiana Resource Center for Autism Indiana Institute on Disability and Community at Indiana University. She will speak about the challenges and opportunities facing services and supports for adults with an ASD. This presentation will give the members of the IACC examples of successful ASD services and supports from around the country. Finally, Lee Grossman will moderate a panel discussion on care for individuals with ASD. This panel might include provider agencies, either exclusively for ASD or other developmental disabilities, a parent, and a parent who is self directing care for their child with ASD.

Other members suggested topics of interest that can be discussed at future Services Subcommittee presentations to the full IACC. Bonnie Strickland suggested that it would be beneficial to discuss what is happening at HRSA. Health care was also discussed as a possible topic. Christine McKee mentioned that parents are struggling because of budget cuts, and would like a presentation on impact of the Individuals with Disabilities Education Act (IDEA). Bonnie Strickland said the problems in services that exist are not specific to one area.

Lee Grossman indicated that suggestions are welcome for people to include on the panel and encouraged members to send suggestions. Alison Singer mentioned that Autism Speaks has launched a program advancing the future of adults with autism. Peter Bell is heading this program and would be good for him to either sit on this panel, or to speak about the program.

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Roadmap Review status

Ellen Blackwell asked that the Autism Spectrum Disorders Roadmap be reviewed to identify a number of items that can be achieved. This is an action item for the next meeting. It is important to provide items that can be a realistic checklist for things that can be done. Cathy Rice offered to create and distribute a summary table from the Roadmap in order to facilitate this project. This topic will be revisited during the October 10, 2008 meeting.

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Future Activities of the Services Subcommittee

Town Hall meetings can be set up around the country. The Department of Health and Human Services has broadcasting facilities in regional offices around the country, the Services Subcommittee might be able to utilize these facilities to broadcast a single town hall meeting remotely. Both HRSA and CMS have a presence in all the offices.

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Round Robin

ASA held their annual conference which had over 2000 attendees. Network of Autism Training and Technical Assistance Programs (NATTAP) is holding their meeting in November. This is one of the largest peer to peer meetings. A number of State Autism Teams will be in attendance.

HRSA has under the Combating Autism Act, a new program with $32 million of funding, split up over several areas. This press release details the programs that have received funding. The states that received the Implementation Grants for Improving Services for Children and Youth with ASD were Alaska, Illinois, Missouri, Utah, Washington, and Wisconsin, and should serve as national models for ASD services.

CDC has a number of ongoing programs, including the ACT early campaign, which is geared to creating parental awareness of normal childhood milestones. The CDC is actively engaged in community outreach, and speaks at conferences. They are also coordinating with HRSA.

NIMH is encouraging grant applications to assess adult ASD services.

Autism Speaks has started a new program in conjunction with Autism Consortium called “Advancing the Future for Adults with Autism”. They have also released a 100 day kit for parents of just-diagnosed children in Spanish. Autism Speaks also has a school community toolkit available for teachers and principals of public schools to help children with ASD who are attending mainstream schools. Both the CDC and Autism Speaks have a DVD in both English and Spanish that will be released in the coming weeks. This DVD explains how educators can talk to parents about their kids and autism (http://www.autismspeaks.org/press/talking_to_parents_about_autism.php). This DVD can be distributed at the November IACC Meeting.

Christine McKee noted that Parent Groups are concerned about the IDEA programs and how the No Child Left Behind Act has affect ASD services for children in school. Many districts are experiencing cutbacks, and are closing centers, which forces the children to be integrated into mainstream schools. There are waitlists for getting interactive devices that can help with ASD services in the schools. Budget cuts are hitting schools hard and some are closing down the one-on-one child/teacher interaction.

NIDCD did not report any new developments.

CMS has issued a task order for research dollars for ASD services and supports. They are conducting an environmental scan that includes interviews. A survey of nine states is being conducted. This survey will look at which combinations of services and supports are being delivered, including a gap analysis.

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Comments/Questions/Other

The next meeting of the Services Subcommittee of the IACC will be a webinar/conference held on Friday, October 10, 2008. The Services Subcommittee would like to have another face to face meeting in early 2009.

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Certification

We hereby certify that the foregoing meeting summary is 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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