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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Conference Call and Webinar on February 24, 2009

The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on February 24, 2009 from 9 a.m. to 11:00 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); Larke Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Jennifer Johnson, Ed.D., Administration for Children and Families; Christine M. McKee, J.D.; Cathy Rice, Ph.D., (representing Norman Trevathan) Centers for Disease Control and Prevention (CDC); and Stephen M. Shore, Ed.D., Autism Spectrum Consulting.

Other Participants: Susan Daniels, Ph.D., Designated Federal Official, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Erin Bryant, M.J., OARC, NIMH; Diane Buckley, M.A., OARC, NIMH; and Azik Schwechter, Ph.D., OARC, NIMH.

Welcome, Introductions, and Housekeeping

The Services Subcommittee Co-Chairs Ellen Blackwell and Lee Grossman welcomed the subcommittee members to the meeting being held through webinar and conference call. The members introduced themselves and then addressed housekeeping issues. The minutes from the December 10, 2008 meeting of the Services Subcommittee were unanimously approved and Ms. Blackwell reminded the committee that their next meeting would be held on the afternoon of March 26, 2009 at the Hubert H. Humphrey building in Washington, D.C. At the March meeting, Capt. Robert DeMartino, M.D., USPHS, Director of the Behavioral Medicine Division at TRICARE, is expected to present on the Department of Defense's behavioral services for children with autism.

Updated Analysis and Discussion of the Request for Information Responses (NOT-MH-08-016)

Ms. Blackwell discussed her re-analysis of the 137 responses received from the Request for Information (RFI) seeking input from the public on high-priority issues around services and supports for people with ASD. The RFI was posted on August 11, 2008 and was open through September 19, 2008. Ms. Blackwell parsed the 137 responses into 497 distinct comments on service issues such as family support, school services, employment, etc. She noted that 21 people who responded to the RFI self-identified as being on the autism spectrum.

Ms. Blackwell and Mr. Grossman worked together to identify 18 response categories, of which concerns about adults with ASD ranked highest by number of public comments. Fifty-five comments (12 percent of total comments) related to needs for adults with autism. These included comments on the need for additional housing, the need to address institutionalization concerns, and the need to address concerns about providing care for a family member with ASD after relatives have died.

The second largest number of public comments addressed Community issues. Fifty-four comments cited community concerns such as the need for better community acceptance and inclusion, the need for better peer opportunities, and the need for better access to services in rural areas.

The third category, Family Support needs, represented 10 percent of the total comments. People responded to the RFI expressing the need for more child and respite care, family support, and crisis care opportunities.

Other response categories included School Services (10 percent of comments), Provider needs (9 percent), and Infrastructure (9 percent). The other 12 categories received fewer comments. These included, in descending order, Employment, Evidence-Based Services and Supports, Health and Safety, Early Diagnosis and Treatment, Transition to Adulthood, Therapies, Legal/Guardianship, Dental, Medical Treatment, Vaccines, Assistive/Technology/Augmentative Communication, Diet, and Other.

Mr. Grossman explained that Infrastructure related to coordinating services across the lifespan. Ms. Blackwell invited correction if subcommittee members or members of the public felt that any comments had not been categorized accurately. In the co-chairs initial draft of the document, "ASD Services and Support Recommendations," the top six response categories were placed in the first-tier priorities. Separate graphics illustrated the categories ranked 6 - 12 and 13-18.

The analysis is available on the IACC Web site under Meeting Materials for the February 24 Subcommittee meeting or by e-mailing.

Ms. Blackwell asked the committee if they felt that Employment warranted a separate category or should be subsumed under Adults with ASD. One subcommittee member said that there seemed to be overlap and should not be an additional category. Ms. Alison Singer said that defining categories was a difficult task before knowing what will result from the classification. Ms. Larke Huang commented that SAMHSA supported an ongoing program building a system of care for people with ASD which might provide a framework for organizing the document.

Mr. Grossman said that he and Ms. Blackwell had organized the responses while considering how to best put forward recommendations to the IACC.

Dr. Stephen Shore joined the conference call. He introduced himself and Ms. Blackwell explained the initial analysis of the public comment. While outlining the categories, she explained that the Vaccine category would likely be removed, as it did not apply to ASD services and supports. Mr. Grossman explain that the Vaccine category effectively canceled itself out - of the eight RFI comments on vaccines, four called for more study of vaccines and four called for the shift away from vaccine focus.

Ms. Blackwell expressed the co-chairs desire to issue another RFI on priority areas for ASD services and supports. She said that she hoped a second RFI would receive better proliferation and response, the first having been open for forty-five days with only 137 people commenting. Dr. Cathy Rice asked whether the RFI would remain general or be specifically intended to inform the recommendations on services and supports to the full IACC. Ms. Blackwell said that she envisioned the next RFI to call for targeted comments on the 17 identified categories (removing Vaccines) in order to inform their report to the full committee.

Ms. Alison Singer suggested that an RFI might receive more responses if the subcommittee was able to communicate how the comments were going to be practically used. She asked whether the public responses could be incorporated as formal revisions to the ASD Services Roadmap before issuing an RFI on the document. Ms. Blackwell responded that was the planned course of action.

Ms. Blackwell said that in the future, the co-chairs hoped to find a way to give greater weight to comments from large organizations (i.e., the Autism Society, National Association of State Medicaid Directors, National Association of State Directors of Developmental Disabilities Services) to indicate that they represented the voice of multiple people.

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Discussion of Draft ASD Services and Supports Recommendations

Ms. Blackwell said that she and Mr. Grossman had been discussing how to address the existing ASD Services Roadmap by examining which portions were still relevant and which were outdated. Mr. Grossman said that during the process of revising the ASD Services Roadmap, produced in 2005, they opted to rename the document "ASD Services and Supports Recommendations." Mr. Grossman requested feedback from the subcommittee on the direction of the new draft.

Mr. Grossman said that while redrafting the document, he and Ms. Blackwell had removed language that may now be less pertinent or timely, such as language around the New Freedom Initiative, due to the new timeframe and change in Presidential Administrations.

Ms. Singer said that they should consider the recommendations for improving the ASD Services Roadmap from the U.S. Government Accountability Office (GAO) report on Federal Autism Activities issued in July 2006. She recalled that the GAO report called for more specific recommendations. The report is available in the IACC Subcommittee meeting materials posted online at the IACC Web site. Mr. Grossman said that he and Ellen had reviewed the report and many of its recommendations had been incorporated into the Expanding the Promises for Individuals with Autism Act of 2007 (S. 937). The Act provides approximately $83 million in Fiscal Year 2008 to improve access to comprehensive treatments, interventions, and services for people with ASD and their families.

Ms. Blackwell summarized the recent redrafting of the ASD services and supports recommendations, which she referred to as a "bare-bones" document. The recommendations include a mission statement, vision statement, and reference the questions on services from Chapters 5 and 6 of the Strategic Plan on ASD Research that was finalized on January 26, 2009. The recommendations document also lists the core values and cross-cutting themes from the Strategic Plan for ASD Research and cites President Obama and Vice-President Biden's four part plan for disabilities, posted on the White House Web site.

The revised document will include the historical context for the ASD Services Roadmap, referencing the New Freedom Initiative and the Olmstead decision. Ms. Blackwell said that she has also planned to include a model for allowing people with ASD to have access to all community services and charts of the RFI response categories. Mr. Grossman suggested creating a goal for each of the top six service categories and asked for the subcommittee's feedback on the proposal.

Ms. Singer suggested using the framework of the Strategic Plan for ASD Research by developing sections on "What do we know?," "What do we need?," and formulating measurable objectives. She suggested the subcommittee not attempt to distill each category down to a single objective and noted that the Strategic Plan for ASD Research did not require any set number. She urged the committee to create a document similar in organization and scope to the Strategic Plan for ASD Research, though the Combating Autism Act does not mention nor require such a document for services and supports. Ms. Singer said that, as in the Strategic Plan for ASD Research, objectives for services and supports should be measurable, assign accountability, and updated annually.

Christine McKee said that in order to get a greater response to the RFI, the subcommittee had to indicate to responders that comments would result in short-term, measurable research goals. In her experience, families of children with ASD questioned what responding to the RFI was actually going to change. (How is this going to improve training and education for my child?)

Mr. Grossman said that they would now look to the OARC staff for help to make the services recommendations a more robust and meaningful document. Dr. Susan Daniels said that the subcommittee must decide how to proceed and then get approval from IACC to move forward.

The subcommittee discussed potentially convening workgroups to create a better developed document for the IACC to approve and send to the HHS Secretary. Ms. Blackwell suggested soliciting expert input but reminded the subcommittee that there were limited administrative funds to conduct this work. Dr. Daniels informed the Services Subcommittee that the subcommittee charged with planning the process for updates to the Strategic Plan for ASD Research would be holding meetings in the coming weeks. Ms. Blackwell suggested potentially working on recommendations for the services document concurrent with updating the Strategic Plan.

Dr. Rice described how the expert working groups developed the IACC research plan over four one-day meetings on January 15-18, 2008 and suggested that a similar format might be useful for developing the Services Recommendations document. The subcommittee then discussed the timing for releasing another RFI. Dr. Rice suggested that the next RFI should be put out after the expert working groups so that the public could respond to a specific document. Ms. Singer reemphasized that the document should link back to the Strategic Plan for ASD Research and Ms. Blackwell suggested linking to President Obama's plan for disabilities, as well. Mr. Grossman recommended that the subcommittee not take immediate action on the document and instead wait for guidance from the new administration. Ms. Blackwell commented on the leadership void with the Secretary of Health and Human Services position still vacant and recommended waiting for more direction before moving forward with the services recommendations. Dr. Rice said that alternatively, the subcommittee might be able to influence new leadership if they already had a document prepared.

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Future Activities of the Services Subcommittee

The subcommittee then discussed scheduling future meetings and the potential for working concurrently with the subcommittee planning the process for updating the Strategic Plan for ASD Research. Ms. Singer suggested that the two subcommittees hold a joint meeting and Dr. Daniels reminded them that such a meeting would represent a quorum, effectively becoming the full IACC. Mr. Grossman informed the subcommittee that he will not be able to attend the July 29, 2009 IACC meeting.

Ms. Blackwell asked the subcommittee to recommend two to three people that they felt should attend an expert working group preparing the service recommendations. Dr. Daniels suggested that the subcommittee formulate a plan and timeline for the service recommendations to present to the IACC at the May 4 meeting. The subcommittee discussed developing a plan and timeline during the March 26 meeting, before Capt. DeMartino speaks.

Mr. Grossman extended the offer to solicit public input on the services recommendations during the Autism Society of America's town hall meetings being held July 22-25. He noted that the town hall meetings would be a valuable venue to get input from service professionals at little cost to the IACC.

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Action Items

  • Ms. Blackwell and Mr. Grossman will revise the recommendation document and make it more congruent with the Strategic Plan for ASD
  • The subcommittee members will submit two to three names of individuals to possibly attend a conference to refine the recommendations.
  • The subcommittee will develop a plan and timeline for the recommendations document to present to the IACC at the May 4 meeting.
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Round Robin

Ms. Blackwell said that the Centers for Medicare & Medicaid Services (CMS) is currently carrying out a task order examining the evidence strength behind services and supports for people with ASD. Dr. David Mandell is responsible for the youth piece of the research and Dr. Brenda Miles, University of Kansas, is examining the adult piece. In addition, CMS is engaged in implementing the Children's Health Insurance Program (CHIP) bill passed in February 2009 and its responsibilities surrounding the American Recovery and Reinvestment Act (ARRA) of 2009.

Dr. Rice reported on ongoing activities at the CDC which continues to monitor and characterize the population of children with autism. The CDC also supports a large case-cohort study examining potential ASD risk factors in children. Dr. Rice reported that the CDC is working to improve its early identification program Learn the Signs. Act Early and is coordinating with service providers across the U.S. A list of regional summits is available at the Association of University Centers on Disabilities (AUCD) Web site at www.aucd.org.

Dr. Jennifer Johnson informed the subcommittee that the Administration for Children and Families was not currently conducting any activities specific to ASD. However, it did receive funds from the ARRA, and is currently working to suggest topical funding areas.

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Adjournment

Mr. Grossman thanked the Subcommittee members for their participation and again thanked Ms. Blackwell for her work categorizing the RFI responses. Ms. Blackwell acknowledged a member of Mr. Grossman's staff for producing the graphics included in the recommendation document. She reiterated that any comments from the public on the draft documents were appreciated and the meeting was then adjourned.

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Certification

These minutes of the IACC Services Subcommittee were unanimously approved by the IACC Services Subcommittee on March 26, 2009.

We hereby certify that the foregoing meeting minutes are 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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