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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Webinar and Conference Call on October 10, 2008

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a meeting on October 10, 2008 from 9:30 a.m. to 11:30 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., (representing Thomas Insel) National Institute of Mental Health (NIMH), National Institutes of Health (NIH); Gail Houle, Ph.D., Department of Education (ED); Larke, Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); 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; Anne Sperling, Ph.D., OARC, NIMH.

Housekeeping Issues

Ms. Ellen Blackwell called for a vote to approve of the minutes from the September 15, 2008 meeting. The vote passed with eight voting 'yes', zero voting 'no', and zero abstentions.

Ms. Blackwell reminded the Subcommittee that the IACC is a FACA committee, and as such, the meeting was public and being recorded.

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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 closed on Friday, September 15, 2008. Its purpose was 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. One hundred and thirty-seven public comments were received. An initial analysis of the comments received was performed by Dr. Anne Sperling of the NIMH. The redacted public comments are available on IACC Website at the following website.

Dr. Sperling detailed her analysis technique to the Subcommittee. First, she identified the topics that were listed in the RFI for people to potentially respond to, and created a graphical display detailing those responses. She noted that although there were 137 comments, many comments included multiple topics. The category garnering the largest number of comments was healthcare and treatment issues-excluding insurance coverage issues. Comments related to insurance coverage were placed in the finance category. The finance category also included coverage for many different kinds of treatments. Another category was entitled "education and awareness". Although this category was not included explicitly in the RFI language, the theme emerged from many comments. Other categories included: community inclusion and family support; Lifespan Transitions; Employment; Safety; Guardianship; and Estate Planning.

Mr. Lee Grossman suggested that the Healthcare and Treatment category actually referred to services and supports. Dr. Sperling commented that in the initial analysis, the healthcare and treatment category included service and support issues related to screening, diagnosis, and therapy, as well as all interactions with healthcare providers.

Ms. Blackwell suggested that the Healthcare category used in the initial RFI analysis should be renamed as Services and Supports, and that priorities should be developed in order to coordinate services.

Dr. Della Hann informed the Subcommittee that Dr. Sperling's analysis was intended to be a 'first draft,' and the Subcommittee should modify as they see fit. All comments on the initial analysis should be sent to Dr. Hann, Ms. Blackwell, and Mr. Grossman in order to update the graphs. Mr. Grossman offered to present the initial analysis at the IACC's November meeting.

Ms. Blackwell commented that the outcomes of the RFI were positive, and that the Office of Autism Research Coordination at the NIMH should be commended on their work.

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November 2008 IACC Meeting – Services Presentation

Ms. Blackwell noted that she will begin the Services Subcommittee set of presentation at the November 21, 2008 IACC meeting with a talk on services and supports for children and adult populations with ASD. The next speaker will be Cathy Pratt, from the state of Indiana, who will give a quick overview on challenges facing the autism services system. Nina Wall-Cote heads the Pennsylvania autism division, and will talk about medical waivers for adults living with ASD. Kathy Reddington, from the state of Connecticut, will discuss high functioning adults with ASD and their job opportunities.

Following the individual speakers, Mr. Grossman will moderate a panel discussion. The panel will include Jeff Struly, who serves adults with ASD in California, Emily Homer, who works for ResCare/VOCA in MD, and Pamela Beck, a mother who is self-directing the services for her son who is living with ASD in Maryland.

Dr. Catherine Rice recommended that the title for the panel discussion should be changed from 'Care for Individuals' to 'Support for Individuals.'

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Roadmap Review status

The Subcommittee was instructed to select items from the previous ASD Roadmap that are easily attainable.

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Future Activities of the Services Subcommittee

Dr. Larke Huang noted that SAMSHA would like to host the next meeting face-to-face in December 2008. The December meeting will address the Roadmap and additional analyses of the RFI.

Dr. Hann informed the Subcommittee that future IACC full committee meetings will be on November 21, 2008, in February, 2009 and April, 2009.

Ms. Blackwell recommended that the Subcommittee should meet in both February and March of 2009. Mr. Grossman also recommended that the Subcommittee meet in early December 2008.

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Comments/Questions/Other

Mr. Grossman reported on activities conducted by ASA. There are a number of conferences, both statewide and international meetings coming up. A conference in Toronto will be sponsored by Geneva Conference, Defeat Autism Now Conference, and Network of Autism Training and Technical Assistance Programs Conference which forty-two state autism teams will attend. The states will be working on coordinating services and supports. Educational standards for centers providing services and supports for ASD will be up for review before a CDC panel. Following their approval, centers would need to be in compliance with the training standards, or face the loss of accreditation. Finally, ASA is aware of eighteen states that are considering adult services ASD legislation.

Dr. Rice reported on activities at CDC. The Act Early campaign is convening regional summits about early childhood interventions in order to gather people together for purposes of collaboration. More information on these summits is available on the Association of University Centers on Disabilities (AUCD) website (http://www.aucd.org). The CDC is also offering mini-grants to help fund these summits. The video about innovative initiatives done in partnership with Autism Speaks has been completed. The CDC has also been working with ASA to increase access to services and interventions. The CDC is currently funding sites to improve healthcare practice and screening.

Ms. Singer reported on activities conducted by AS. The DVD and toolkit addressing autism designed for preschool teachers has been completed in collaboration with the CDC, and is available for distribution. Teachers seem to know the signs of autism onset, but are hesitant to have the conversation with the parents. AS held a United Nations World Focus on Autism where AS announced their Global Public Health Initiative, aimed to increase early diagnosis treatment, access to services and supports globally. In addition, AS is working to increase international participation in World Autism Awareness Day, which will occur in April 2009. Toolkits are being developed for first responders, as well as other providers such as dentists, barbers and other haircutting professionals.

Mrs. Christine McKee reported on her recent experiences as a parent of a child with ASD. She noted that there is a spending freeze in her school district and this has had a negative effect on services for children with ASD. At Mrs. McKee's daughter's school, parents have joined together to raise money at a fundraiser in order to support teacher training. She was pleased, however, to see a poster in her pediatrician's office that focused on autism. She also noted that children with disabilities are being discriminated against in where they can hold their birthdays. Mr. Grossman commented that, unfortunately, this is not a rare occurrence. Discrimination occurs for many different types of disabilities. Mrs. McKee mentioned that a packet might be helpful to inform parents about these discriminations.

Ms. Bonnie Strickland reported on HRSA activities. The list of the Leadership Education in Neurodevelopmental & Related Disabilities (LEND expansions and new grants under the Combating Autism Act 2006 was distributed to the subcommittee after the September 15, 2008 meeting. Several of those initiatives, specifically focused on ASD, have now been expanded. HRSA is supporting coordinating centers with the specific purpose of coordinating services across service sectors. An evaluation component will be launched in the coming week. HRSA is holding a grantee meeting in December, and is working with the CDC on securing regional funds.

Dr. Denise Juliano-Bult reported on activities conducted by NIMH. Research applications are currently being accepted addressing ASD service use and transitions across the lifespan.

Dr. Gail Houle reported on activities at ED. A Request for Applications has gone out for state participation in a national professional development center. This center helps states undergo training, and offers support to improve programs within the state. Each site is funded at $1million, and every year three more states are enrolled in the program. States that are currently in the program include Indiana, Wisconsin, New Mexico, Kentucky, Minnesota, and Michigan. Dr. Houle also mentioned that some interesting activities were being done by the Department of Defense (DOD) in regard to services and supports for families living with ASD. Ms. Blackwell recommended that the DOD be invited to give a presentation to the Services Subcommittee at a future meeting. This could help in collaboration with the IACC and the DOD.

Ms. Blackwell reported on activities at CMS. CMS is finding that state Medicaid programs are filing additional requests for technical assistance on autism issues. Also, the states are requesting home and community-based waivers to be put in place for children living with ASD. Pennsylvania, Nebraska, Iowa, Montana and Washington are all interested in waivers for adults living with ASD. The CMS task order on autism is getting underway. Already begun are the first two pieces: a) an environmental scan looking at evidence-based services and supports; and, b) assessment of the practices of nine states. The coming years of this task order will see the development of promising practices, and a website will be funded in coming years. The outcomes of this task order will become very important in the future, as states are facing budget cuts.

Dr. Hann informed the Subcommittee that the NIMH has formed the Office of Autism Research Coordination (OARC), and that office will responsible for facilitating the work of the IACC and its Subcommittees in the future. Dr. Hann also noted that any documents that are sent out to the Subcommittee are considered public documents, and will be made available to the public.

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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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