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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Conference Call and Webinar on March 26, 2009

The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on February 24, 2009 in Conference Room E of the NIH Neuroscience Center in Rockville, Maryland 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); Gail Houle, Ph.D., Department of Education; 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 Bonnie Strickland, Ph.D., (representing Peter van Dyck) Health Resources and Services Administration

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; Azik Schwechter, Ph.D., OARC, NIMH.

Welcome, Introductions, and Workshop Participant Recommendations

Co-Chairs Ms. Ellen Blackwell and Mr. Lee Grossman welcomed the subcommittee members and led introductions. Ms. Blackwell asked the subcommittee members to share the names of the experts they would recommend to attend possible services workshops over the summer, as discussed at the last services subcommittee meeting on February 24, 2008. The members had recommended convening a workshop on services during the Strategic Planning Subcommittee workshops, which would be held to monitor and update the Strategic Plan for ASD Research.

Dr. Bonnie Strickland recommended Grace Williams from the Family Voices of Maryland and the Association of Child and Maternal Health, and AmyWeatherby, a Florida State University speech pathologist who helped to develop the ASD Services Roadmap in 2005. Ms. Blackwell suggested including David Mandell, assistant professor of psychiatry at the University of Pennsylvania, Charlie Lakin from the University of Minnesota, Ernest McKenney, Medicaid Administration director, and Steven Eiken, senior analyst for Thomson Healthcare who participated in the strategic planning workgroups for the IACC Strategic Plan for ASD Research held in 2008. Mr. Grossman said that he could recommend a long list of participants for a services workshop but would first want to know more about the workshop’s objectives.

Ms. Strickland asked how many experts had participated in the services workshops for the ASD Services Roadmap presented in 2005 and was told that the panel had included approximately 16 people.

Mr. Grossman said he would recommend Cathy Pratt, Brenda Myles, Martha Herbert, and Ted Carr for the services workshop. Cathy Rice recommended Barbara Becker-Cottrill of the Autism Training Center. Ms. Strickland made additional recommendations of Chris Johnson, professor of pediatrics at the University of Texas Health Sciences center in San Antonio and Scott Myers, neurodevelopmental pediatrician.

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Approval of Minutes from February 24, 2009

The subcommittee then unanimously approved the minutes from the February 24, 2009 Services Subcommittee meeting.

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Housekeeping Issues

Ms. Blackwell informed the subcommittee that the scheduled speaker, Captain DeMartino of TRICARE, was unable to attend the meeting because he had been called to jury duty. Ms. Blackwell discussed subcommittee member Alison Singer’s recommendation at the last meeting that members present agency updates to the Services Subcommittee as they do at the full IACC meetings. Ms. Blackwell reminded the subcommittee that part of their charge was to improve communications between government agencies and also recommended inviting presentations about ASD service issues from government agencies not represented on the IACC. Mr. Grossman recommended inviting someone from the presidential administration to present, as well as the Department of Housing and Urban Development (HUD), the Department of Defense and the Agency for Healthcare Research and Quality (AHRQ). Ms. Blackwell suggested Deb Potter as a potential AHRQ speaker.

Dr. Strickland suggested that the public would like to hear how the government is working together and held the collaboration between CDC and HRSA on the Learn the Signs. Act Early. campaign as an example. Dr. Strickland and Dr. Cathy Rice agreed to present jointly on their agencies’ collaboration for the Learn the Signs initiative during the next Services Subcommittee meeting.

Mr. Grossman had been unable to attend the Strategic Planning Subcommittee meeting on March 17, 2009, and asked about what had occurred. Ms. Blackwell, the only Services Subcommittee member present who had also attended the Planning Subcommittee, said that the Planning Subcommittee had seemed interested in an aggressive schedule for updating the Strategic Plan for ASD Research. The Planning Subcommittee had discussed the timeline for updating the plan and wished to seek input from the public about the process through Requests for Information (RFIs) and/or town hall meetings. The subcommittee had also discussed convening a group of experts to update the plan, organized around the six-question framework of the document. Dr. Huang suggested creating a parallel services workgroup to the Strategic Planning Subcommittee’s updating activities.

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Discussion of Recommendations for ASD Services and Support

Ms. Blackwell and Mr. Grossman discussed their Recommendations for ASD Services and Supports which had been presented at the last meeting of the Services Subcommittee. Ms. Blackwell reminded the group that Ms. Singer had suggested organizing the document around the six-question format of the Strategic Plan for ASD Research. Ms Blackwell said that she and Mr. Grossman had created the recommendations using language from the Roadmap for ASD Services and the analysis of responses from the Request for Information issued in August 2008. She hoped to create a document with three or four short-term recommendations on ASD services to put before the new Secretary of Health and Human Services. Ms. Blackwell asked for input from the committee on the direction of the recommendations and whether outside help was needed.

Ms. Christine McKee said that she wanted to see progress for ASD service objectives and said that she wished there had been more references to services in the IACC’s Strategic Plan for ASD Research. She encouraged formulating concrete and measurable recommendations that could be started immediately. Dr. Strickland recommended further analyzing the Strategic Plan for ASD Research, the Request for Information on ASD services, and the Roadmap for ASD Services to create a list of actionable objectives. Dr. Rice said that putting out an additional RFI before the public has something concrete to respond to may not provide meaningful feedback.

Ms. Blackwell restated the charges of the Combating Autism Act which calls on the IACC to monitor federal activities and make recommendations to the HHS Secretary regarding appropriate changes. Mr. Grossman said that the new presidential administration has given autism high priority and that the IACC should fully utilize the opportunity to make recommendations to the Secretary. Mr. Grossman said that the Autism Society of America was working on its own priorities for public policies and that autism would be a good model for creating systems change in the public sector.

Dr. Huang supported a cross-analysis of the Strategic Plan, RFI, and Roadmap document, saying that it was an opportune time for supporting services. She said that, while the Administration placed a high priority on autism, no one was crafting recommendations so that responsibility fell on the Services Subcommittee. She pointed to SAMHSA’s Systems of Care, a program for children with serious emotional disorders, as a model for service delivery outlined in the ASD Roadmap. She suggested that the Services Subcommittee propose a grant program for services delivery systems. Dr. Huang commented that she had yet to see how services had been directly improved by the IACC and urged greater translation into real practice. Dr. Strickland pointed to Learn the Signs as a program that should be more widespread.

Dr. Jennifer Johnson recommended creating parameters to gathering and collecting services information on the federal level. Dr. Strickland suggested gathering recommendations on needed services, examining what activities are already underway at the agencies, and creating a mechanism to evaluate the activities. She said that resources become a huge consideration - the ASD Roadmap took a year and half to write and once completed, none of the agencies had the resources to implement the objectives. Dr. Rice said that each state is required to have a plan for providing ASD services and that the IACC might consider serving as a coordinating group to distribute this information. Ms. Blackwell suggested collaborating with the National Association of State Developmental Disabilities Directors and Mr. Grossman suggested working with the National Association of State Administrators of Special Education.

The subcommittee supported developing a report for both federal and state activities that provide services for people with ASD. Dr. Houle said that the Subcommittee would encounter issues when querying states because of the Paperwork Reduction Act which regulates the amount of information the federal government can request. The subcommittee agreed to have Ms. Blackwell and Mr. Grossman create a template for querying federal agencies on their ASD services activities categorized by age group (children, transitioning youth, and adults). Ms. Blackwell suggested using the largest public comment categories to structure the requests. The subcommittee members discussed how the results stemming from the findings would be valuable for the full IACC and could drive the recommendations to the Secretary.

Ms. Blackwell said that she had requested a presentation on Applied Behavior Analysis (ABA) at a future IACC meeting. She said that because of the full committee’s focus on the Strategic Plan, there had been less opportunity to hear presentations on ASD services. Ms. McKee said she had contacted Dr. Della Hann, IACC Executive Secretary, to schedule a presentation on augmentative communication for the IACC agenda.

Dr. Johnson suggested gathering information that could drive the discussion on systems change and also recommended adding “early childhood” to the age categories. She said that the Administration for Children and Families gathers information on autism activities so reporting would be fairly easy. Ms. Blackwell said that CMS collects information on waivers that serve children with autism but the agency does not collect data on the number of people with autism being served by very large waivers. Dr. Houle said a large amount of quantitative data was collected by the Department of Education. Dr. Rice said that she was not suggesting collecting new information on services provision but rather advising the subcommittee to look to the reports the Governor’s Councils and Blue Ribbon Panels had already produced and use them as resources.

Dr. Strickland asked Dr. Rice whether the Department of Education kept data on the ages of children receiving services. Dr. Rice explained that age ranges were available but that the children were categorized by need rather than diagnosis. Ms. McKee cautioned that data on young children might not be reliable because her daughter did not receive services until she entered kindergarten. Dr. Strickland said that based on the data collected, it was not possible to tell if children with ASD were receiving earlier interventions as a result of national initiatives such as Learn the Signs. Act Early. Dr. Johnson agreed and said that, in addition, assessment services were often severely delayed due to the high demand. She suggested a service component of Learn the Signs for pediatricians.

Ms. Blackwell and Mr. Grossman agreed to develop a question letter to agencies requesting information about their ASD services provision. They also agreed to draft a list of the agencies to query for the subcommittee to review. She summarized that the subcommittee seemed to be interested in the assessment of services at the federal level, and possibly state, figuring out gaps in services and crafting recommendations from a systems perspective.

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Future Activities of the Services Subcommittee

Dr. Rice and Dr. Strickland agreed to prepare a one-hour presentation on the CDC and HRSA’s collaborative efforts around the Learn the Signs program.

Mr. Grossman said that the IACC could use the town hall meetings during the ASA conference on July 23 - 25 to collect feedback on the recently released Strategic Plan for ASD Research. He said that 1500 to 2000 people would attend the conference, including service providers, researchers and medical professionals. Ms. Blackwell asked if the town hall meeting would be exclusively for the Services Subcommittee or for the full IACC.

Mr. Grossman said that while the majority of questions would probably be service-related, it would not be limited to services. He said that he would work with Dr. Susan Daniels of the OARC to identify a potential date and time to present to the IACC at the May 4, 2009 meeting. Dr. Daniels suggested proposing two different dates and times for the IACC to consider. She also asked the subcommittee to identify what type of product they wished to result from the town hall meeting. Ms. Blackwell suggested that the IACC could also use the multiple Health and Human Services satellite offices linked electronically across the country as another option for holding town hall meetings.

Ms. Blackwell brought the subcommittee’s attention to a brochure included in their packets on an apprenticeship program for long-term care providers offered by the Department of Labor. The apprenticeship program is part of the Department of Labor’s effort to train skilled direct support specialists. The subcommittee members also received the final report about the Connecticut Autism pilot program on which Ms. Kathy Reddington had presented at the November 21, 2008 meeting.

Ms. Blackwell reported that NIH has recently issued a grant solicitation specific to autism1 which incorporated many of the services objectives recommended in the Strategic Plan for ASD Research. Dr. Daniels announced that NIH had also released a $60 million initiative for research on the heterogeneity of ASD that was heavily influenced by the IACC strategic plan.2,3,4 This initiative, issued as three separate Requests for Applications, will be supported by funds received by NIH from the American Reinvestment and Recovery Act (ARRA or Recovery Act) of 2009.

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Round Robin

The subcommittee members then reported on their organizations’ activities related to ASD services.

Health Resources and Services Administration (HRSA) – Dr. Strickland said that HRSA had not received any autism-specific funding from ARRA, but that the agency was supporting service efforts through the Combating Autism Act. New training opportunities are available as a result of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND)organizations. HRSA currently contributes $5.6 million dollars to LEND activities and expects a $2 million dollar increase in 2009. The agency currently funds $6 million dollars in autism research - $4 million for research into the physical aspects of autism and $2 million investigating cognitive, social, and emotional issues. They expect a $2 million dollar increase in research funding this year. In addition, HRSA funds several state implementation grants and hopes to add additional grants.

Centers for Disease Control and Prevention (CDC) – Dr. Rice reported that the CDC was supporting the ongoing surveillance and monitoring of ASD and large-scale risk factor research through the Study to Explore Early Development (SEED). CDC has partnered with HRSA and CMH to coordinate summits for Learn the Signs. Act Early.

Department of Education – Dr. Houle reported that under the Recovery Act, special education Parts B and C of the Individuals with Disabilities Education Act (IDEA) have received increased funding. In total, Part A, for children from ages 6 to 21, received $11.3 billion in additional funding. The Department of Education received $400 million in additional appropriations for preschool-aged children and $500 million for children from birth to age 3 (Part C). Ed.gov provides a chart with individual state’s increased allotments.

Christine McKee is not associated with any agency and so does not provide funding. She said that she was interested in hearing about the ASD services activities of the Department of Education. Ms. McKee announced that she had just finished the alternative Maryland State Assessment. She reported that some parents of children with ASD were concerned about their child’s meaningful inclusion in the classroom.

Administration on Developmental Disabilities (ADD) – Dr. Johnson reported that ADD did not receive direct stimulus finding, but that the Administration for Children and Families in which ADD is housed, received stimulus funding that will affect programs like Head Start. She reported that ADD would fund partnership with minority-serving institutions and that the administration continued to be involved in providing LEND grants and participating in the Learn the Signs program.

Autism Society of America (ASA) – Mr. Grossman reported that April is Autism Awareness month. The United Nations will celebrate World Autism Awareness Day on April 1 and 2, which will include declarations by the Secretary General and a panel speaking about autism as a human rights issue. Mr. Grossman said that two major pieces of autism legislation would likely be introduced to Congress in the coming weeks and that he would keep the IACC informed.

Centers for Medicare & Medicaid Services (CMS) – Ms. Blackwell reported that CMS had been impacted by both the Recovery Act and the Children’s Health Insurance Program (CHIP) legislation. As a result, CMS is involved in providing a large infusion of funds to the states for their Medicare and Medicaid programs. She explained that CMS is driven by a partnership between federal and state funding. The money received by the states will provide a temporary increase of 50 to 78 percent depending on the state’s funding formula. Ms. Blackwell said that many states were in dire financial straits and questions about the long-term sustainability for some of the Medicaid programs remained. She also described a demonstration about to begin that could affect some people with autism. The program seeks to take people out of the institutional setting and return them to home and community-based settings.

Substance Abuse and Mental Health Services Administration (SAMHSA) – Dr. Huang reported that SAMHSA had not received any stimulus funding but continued to fund the Systems of Care program and Linking Actions for Unmet Needs in Children’s Health (LAUNCH) program that focuses on early screening and wellness interventions for children from birth to age 8. SAMHSA will expand LAUNCH by $20 million in 2009.

Mr. Grossman thanked the subcommittee members for participating and the group said that they would work with OARC to schedule their next meeting. The meeting was then adjourned at 3:00 p.m.

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Certification

These minutes of the IACC Services Subcommittee were unanimously approved by the IACC Services Subcommittee on June 16, 2009.

We hereby certify that the foregoing meeting minutes are accurate and complete.

/Ellen Blackwell/
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
/Lee Grossman/
Lee Grossman
Services Subcommittee Co-Chair

1 Pilot Intervention and Services Research Grants (R34).
2 Recovery Act Limited Competition: Research to Address the Heterogeneity in Autism Spectrum Disorders (Collaborative R01)
3 Recovery Act Limited Competition: Research to Address the Heterogeneity in Autism Spectrum Disorders
4 Recovery Act Limited Competition: Research to Address the Heterogeneity in Autism Spectrum Disorders (R34)

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