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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Conference Call and Webinar on June 16, 2009

The Interagency Autism Coordinating (IACC) Services Subcommittee held a meeting on June 16, 2009, in Conference Room H of the Executive Plaza North building at the National Institutes of Health in Rockville, Maryland, from 2:00 p.m. to 3:30 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; Christine McKee, J.D.; Cathy Rice, Ph.D., (representing Ed Trevathan, M.D., M.P.H.) Centers for Disease Control and Prevention (CDC); Alison Tepper Singer, M.B.A, Autism Science Foundation (ASF); and Bonnie Strickland, Ph.D., (representing Peter van Dyck, M.D., M.P.H.) Health Resources and Services Administration

Welcome and Introductions

Services Subcommittee Co-chairs Ms. Ellen Blackwell and Mr. Lee Grossman welcomed the subcommittee members to the meeting. Members introduced themselves and then approved the minutes of the previous services subcommittee meeting on March 26, 2009.

At the prior meeting, the services subcommittee members had agreed to include presentations relevant to autism services as a regular part of each meeting. Dr. Georgina Peacock, Centers for Disease Control and Prevention (CDC), and Dr. Bonnie Strickland, Health Resources and Services Administration (HRSA), agreed to present jointly on the Learn the Signs. Act Early. campaign and The Combating Autism Act Initiative.

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The Combating Autism Act Initiative (CAAI) - Dr. Bonnie Strickland, HRSA

After noting the dramatic rise in autism spectrum disorder diagnoses, Dr. Strickland presented the findings from the National Survey of Children with Special Health Care Needs (NS-CSHCN). The survey results indicated that children with ASD fare significantly less well in the system than other children with special health care needs. Children with ASD also had less access to important components of care, reporting difficulty receiving referrals and family support services. Guidelines published by the American Academy of Pediatrics (AAP) recommended earlier and more frequent surveillance, in addition to more aggressive management, for ASD.

People with ASD face many systems challenges, including ineffective integration of ASD services into the broader system, a lack of interagency coordination, and ineffective transition planning for adulthood. Dr. Strickland reviewed the Combating Autism Act (Public Law 109-416), enacted in 2006, which amended the Public Health Service Act to "combat autism through research, screening, intervention, and education." The Act appropriated approximately $114.5 million to NIH for ASD research; CDC's Disabilities Surveillance and Research Program received $16.5 million; and HRSA received $37 million to increase ASD awareness, promote evidence-based interventions, reduce barriers to screening and diagnoses, and train health professionals to diagnose and provide interventions.

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The Learn the Signs. Act Early. Campaign - Dr. Georgina Peacock, CDC

Dr. Georgina Peacock, a developmental pediatrician, then presented to the subcommittee on the Learn the Signs. Act Early. campaign, designed to increase parents' awareness of developmental milestones and early warning signs, in addition to encouraging early action when developmental delays are detected. The campaign also helps parents concerned with their child's development to open a dialogue with their health provider. The campaign, started in 2004, is primarily directed toward parents of children four years of age and younger, with health care professionals and early educators as secondary audiences.

Dr. Peacock introduced the components of the campaign, which includes audience-specific resource kits, interactive web tools, and public service announcements. She mentioned that the CDC has also partnered with HRSA to develop case studies for use in medical schools to teach students to identify the early signs of autism and implement autism interventions and treatments.

She then described several projects funded through the CDC's cooperative agreements with the Association of University Centers on Disabilities (AUCD): A center in Oklahoma is conducting research on helping family practitioners improve developmental services in primary care. A Wisconsin center is looking at differences in screening methods for developmental disabilities among pediatricians and family physicians. Dr. Peacock then discussed current collaborative research awards and research topics of interest under review for 2009. Currently, the Learn the Signs. Act Early. campaign is under evaluation and the CDC is expected to receive recommendations for improvement.

Lt. Deidre Washington, Maternal and Child Health Bureau, then presented to the subcommittee HRSA's Combating Autism Act Initiative (CAAI). The CAAI is designed to increase autism awareness, reduce barriers to screening and diagnosis, support research into evidence-based interventions, promote guidelines, and train health professionals to screen for ASD and provide interventions. The CAAI supports training through LEND programs (Leadership Education in Neurodevelopmental and Related Disabilities), which are interdisciplinary leadership training programs funded by HRSA. Lt. Washington presented a list of participating LEND programs and developmental pediatric programs. Lt. Washington then described the Autism Intervention Research (AIR) networks supported through CAAI, the state demonstration and policy programs, and the national evaluation mandated by the Combating Autism Act.

Dr. Peacock spoke about the collaboration between HRSA and CDC, who hold quarterly meetings to discuss their activities. The agencies also sponsor Act Early Regional Summits, to bring together key stakeholders to improve early identification and intervention. The summits increase awareness of the Learn the Signs. Act Early. campaign and educate state teams on how to increase state-wide early identification, diagnosis, and service provision for families with ASD. States also share their State of the State reports, which can provide valuable models for other states.

Dr. Peacock said that systems change has resulted from state team meetings. Teams are able to promote coordination across systems, and HRSA provides small seed grants to support ASD awareness activities. Summits will be completed in the spring of 2010, and HRSA and CDC are currently discussing what steps should follow.

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Questions from the Subcommittee

Ms. Blackwell asked about the agencies' transition activities (research focusing on the transitioning from adolescence into adulthood) and Lt. Washington said that University of Missouri had made transition research and training one of its priorities. Ms. Singer asked whether a focus might return to national projects funded by the Learn the Signs. Act Early campaign, rather than the recent shift to state-specific projects. Dr. Peacock said that this would certainly be discussed in the future. The subcommittee then talked about how to facilitate effective collaboration between state education teams.

Dr. Cathy Rice asked if the Combating Autism Act included the recommendation that every state should have its own plan for autism. If so, she said that reporting back on state's efforts could help to create collaborative efforts. Mr. Grossman said that the legislation included the recommendation for state autism plans, but that not much progress had been made in that area. Dr. Peacock said that they were in the process of identifying a liaison for each state team to aid in collaboration.

The subcommittee discussed the training modules that are being developed for medical students. Mr. Grossman asked whether they had received pediatrician input on the applicability of the information in the Learn the Signs. Act Early. campaign. He said that one obstacle to screening was the lack of financial incentives for pediatricians, as well as a lack of information on the next steps for the family. Dr. Peacock said that they intended to have a guide that would accompany case study teaching, and it would also be necessary to collaborate with local parents and advocates to put together resource guides.

Dr. Daniels asked about cultural barriers to early diagnosis. Dr. Rice said that more information was needed; however, it is known that Hispanic children with autism are much less likely to be identified than Caucasian children.

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Discussion of Services Town Hall Meeting – July 24, 2009

The subcommittee then discussed the July 24, 2009 town hall meeting that will be held on the second day of the Autism Society of America's annual conference. Mr. Grossman said that the town hall meeting would follow the general session on Friday. The Federal Register Notice will ask participants to respond to questions five and six of the strategic plan ("Where can I turn for services?" And "What does the future hold?"), in addition to other feedback. People will be able to participate remotely if they are not able to attend in person. Mr. Grossman encouraged the subcommittee members that would be attending to stay for the science track scheduled to follow the town hall meeting on "Science that makes a difference."

Ms. Blackwell informed the subcommittee that scientific workshops are expected to be scheduled for Fall 2009. Information will be posted on the IACC Web site, as it becomes available.

Ms. Houle agreed to present information at the next subcommittee meeting on the education programs supported by the Department of Education for children and youth with ASD. The committee discussed holding the next subcommittee meeting at the end of August. Ms. Singer said that the funding list for ASD research used for the portfolio analysis would be a helpful resource for expanding the subcommittee's list of presenters.

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Round Robin Updates

The subcommittee then held round-robin updates on agency activities related to autism.

Alison Singer gave the subcommittee an update on the recently-formed Autism Science Foundation This link exits the Interagency Autism Coordinating Committee Web site, a non-profit organization dedicated to funding research into the causes, treatments, evidence-based interventions, and services for people with ASD. Ms. Singer described the "Science and Sandwiches" program, where researchers present significant autism findings over lunch. The inaugural event took place in New York City, NY, and upcoming presentations are scheduled in cities across the East coast.

Ms. Blackwell said that CMS was continuing to be impacted by two recent pieces of legislation, the Child Health Insurance Program (CHIP) and the American Recovery and Reinvestment Act (ARRA). She said that Medicaid and state budgets have suffered due to the current economic climate and CMS was working to help states maximize their flexibility based on their fiscal situation.

Mr. Grossman said that the Autism Society of America was currently focused on putting together their annual conference. He highlighted the conference's keynote panels – the public policy panel will include people from the Presidential administration and Congress to talk about current state of autism and future directions. Another keynote panel is dedicated to the culture of autism with people on the spectrum talking about their experience and perspectives.

Dr. Strickland said that in addition to the Learn the Signs. Act Early. campaign, HRSA supports a diverse population of people with disabilities. She reminded the subcommittee that the agency cannot have a self-sustaining system solely for ASD. HRSA supports title V programs in every state (Title V of the Social Security Act is one of the largest Federal block grant programs. It leads the nation in ensuring the health of all mothers, infants, children, adolescents, and children with special health care needs) and is currently working to maximize Title V state block grants. HRSA also supports a cooperative agreement with the American Academy of Pediatrics to promote the medical home concept and is working with industry partners on the Patient-Centered Primary Care Collaborative to change the model of healthcare in U.S.

Dr. Rice reported that the CDC was continuing its prevalence work on autism and was in the process of developing the next prevalence report. In addition, the CDC is continuing to undertake risk factor research by enrolling families in the CADDRE (Centers for Autism and Developmental Disabilities Research and Epidemiology) network.

Ms. Singer asked if the prevalence data were being collected from the same centers used for the 2006 report. Dr. Rice said the sites would be the same, save for one, and that the report will be available on the CDC Web site.

Dr. Houle reported that the Department of Education was currently in the process of reviewing state applications for the third cohort of their national professional development center on autism spectrum disorders. The department has completed teacher training modules that are being used in the states that are currently part of the program. She said that smaller personnel preparation grants have already been awarded to universities to train Master's level service providers. Dr. Houle said she would bring more data about the Department of Education's activities at her presentation during the August meeting.

The meeting was then adjourned.

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Certification

These minutes of the IACC Services Subcommittee were approved by the Subcommittee on September 15, 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
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