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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Webinar and Conference Call on April 30, 2008

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a conference call on April 30, 2008, from 1:00 p.m. to 3:00 p.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); Larke Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Gail R. Houle, Ph.D., U.S. Department of Education (ED); Christine M. McKee, J.D.; Patricia A. Morrissey, Ph.D., Administration for Children and Families; Catherine Rice, Ph.D., (representing Ed Trevathan) Centers for Disease Control and Prevention (CDC); Bonnie Strickland (representing Peter van Dyck, M.D., M.P.H.) Health Resources and Services Administration (HRSA)

Other Participants: Lisa Gilotty, Ph.D., Designated Federal Official, National Institute of Mental Health (NIMH); Joyce Chung, M.D., NIMH (Autism Coordinator)

Roll Call and Housekeeping Issues

After a roll call of participants, Co-chair Ms. Ellen Blackwell reminded the group that as a subcommittee of the IACC, the Services Subcommittee was required to adhere to Federal Advisory Committee Act (FACA) rules. She stated that the announced purpose of the meeting announced in the Federal Register was to "review the current state of services and supports for individuals with Autism Spectrum Disorder (ASD) and their families in order to improve these services." Both she and her co-chair Mr. Lee Grossman want the members to use the time today to form a consensus on how to address ASD service issues.

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Work of the Previous Services Subcommittee

Mr. Grossman then provided a historical perspective on previous IACC activities concerning ASD services. He related that the original IACC, of which he was a member, had formed a Services Subcommittee that was led by Merle McPherson and Sybil Goldman. Both Dr. Bonnie Strickland and Dr. Larke Huang also served on that original subcommittee. The Subcommittee in turn formed an expert workgroup that formulated a Autism Spectrum Disorders Roadmap that was developed over a two year period. That report in its draft (longer) form and the one posted on the IACC website represent a great foundation on which this newly formed Services Subcommittee could base its mission. Unfortunately, not long after the Roadmap was presented and approved by the IACC in May 2005, the IACC was dissolved by the passage of the Combating Autism Act of 2006. Therefore it is unclear whether the priorities in the Roadmap identified by various agencies on the IACC were ever acted upon.

Dr. Bonnie Strickland agreed with Mr. Grossman's summary and added that the Maternal Health Bureau of HRSA has taken on the issue of the "medical home" outlined in the Roadmap and are nearing completion of a document on this topic. Gail Houle mentioned that the lack of resources to carry out or implement aspects of the plan were an issue.

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Strategic Framework for the Services Subcommittee

Ms. Blackwell believes that the time is right to move on issues of ASD services. She reported on a recent meeting organized by the state of Pennsylvania that brought together more than 25 states to discuss coordination of services and supports for people with ASD. Next month, she and Lee will be attending the National Association of State Directors of Developmental Disabilities Services meeting and that there is much interest in this topic.

The group moved on to discuss initiatives at the Department of Defense (DoD) in the area of autism services stemming from the National Defense Authorization Act. Both Dr. Gail Houle and Ms. Ellen Blackwell have been in contact or working with Captain Robert DiMartino on the health side of DoD on a demonstration project through TriCare. There is also an effort on the schools and education side of the DoD which may be where the congressionally authorized autism service centers will be located.

Ms. Blackwell urged the group to develop a strategic framework in order to decide how they wanted to move forward. She felt they should develop a mission and vision for the Subcommittee. One issue she felt was important was the need for baseline data in order to be able to measure progress.

Dr. Strickland described the National Survey of Children with Special Health Care Needs (CSHCN) in which autism questions were added in 2005. The survey focuses on health, not education, but can serve as a resource for information. She urged the group to look at efforts like this that are already underway and could be used as data. Ms. Blackwell pointed out however, that there is still a lack of data on adults with ASD.

Mr. Grossman and Ms. Blackwell raised the possibility of bringing in "consultants" to the Subcommittee from DoD, DoJ, HUD, Dept. of Transportation as well as private groups like Easter Seals and the Fragile X Society. Mr. Grossman also mentioned groups that would be those that would implement the services recommendations such as the NEA, AAP, child psychiatrists or behavioral health insurance companies.

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Future Activities of the Services Subcommittee

The group discussed the need to meet face to face and that it would not be possible to meet as a Subcommittee during the May 12th IACC meeting because they had not established the meeting and posted a federal register notice about it in a timely fashion.

Ms. Blackwell mentioned the possibility of issuing an RFI for ASD services and supports, especially for adults. The group discussed how this would be done and what would be the focus of such an RFI. Cathy Rice suggested that the RFI questions be tied to the previous Roadmap. They also discussed using the responses about services from the previously issued RFI for public input on the IACC strategic plan to help inform any new RFI.

A gap in the Roadmap is that it went as far as transition to adulthood but did not address services for adults with ASD. The group discussed the need to expand the document to be a lifespan roadmap and that an implementation plan for the Roadmap recommendations is needed.

The group then discussed the issue of funding. Dr. Strickland stated that HRSA received approximately $20 million to spend on ASD activities and that much of that amount was allocated for specific activities. There will be around $2 million for some states to implement plans that they have for ASD services. Ellen said that CMS does not have any projects specific to autism but that she has been able to garner a small amount of funds to launch such projects and was hoping that other agencies could contribute to this.

A topic of interest was how states or other payors were building ASD services into their plans. A possible goal could be to establish guidelines or standards for benefit packages. The issue of using town hall meetings as a way to receive public participation was raised and Lee Grossman suggested the ASA conference in Orlando in July as a possible venue for this. Joyce Chung suggested that if this is something they would like to do, that the Subcommittee should ask the IACC about this at the May 12th meeting. In addition to town hall meetings or to supplement them, the issue of using technology to facilitate these meetings was raised.

Dr. Pat Morrissey described the "Policy Academies" that Dr. Margaret Giannini organized that were good for looking at state level policies and for infrastructure building. They do not deal with services delivery though. States are in a fiscally tight period and so they are looking for cost effective options.

The group thought that examining the 41 research initiatives that came out of the workshops could give them an idea of what services research gaps need to be filled.

At the end of the meeting, they group agreed that they should determine a regular schedule of calls and announce them as a group in the federal register. They would like to have a face to face meeting in June and would like to know if they have the option to form working groups to focus on specific tasks.

The group closed with Bonnie providing the website for the CSHCN survey. Ellen and Lee will get back to the group with dates for a face-to-face meeting in June.

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Certification

We hereby certify that the foregoing meeting summary is 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
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