Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on March 14, 2008
The Interagency Autism Coordinating Committee (IACC) convened at 9:00 a.m. on March 14, 2008, in the Rotunda Room of the Ronald Reagan Building and International Trade Center in Washington, D.C., and adjourned at approximately 3:30 p.m.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.
Committee Members Present at the Meeting: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Ann Wagner, Ph.D., Executive Secretary, NIMH; Duane F. Alexander, M.D., National Institute of Child Health and Human Development (NICHD); James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Jeff Buck, Ph.D., (representing Larke Huang)Substance Abuse and Mental Health Services Administration (SAMHSA); Margaret Giannini, M.D., F.A.A.P., Office on Disability, U.S. Department of Health and Human Services (DHHS); Lee Grossman, Autism Society of America; Gail R. Houle, Ph.D., U.S. Department of Education (ED); Yvette M. Janvier, M.D., Children's Specialized Hospital; Story C. Landis, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Christine M. McKee, J.D.; Patricia A. Morrissey, Ph.D., Administration for Children and Families; Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Catherine Rice, Ph.D., (representing Ed Trevathan) Centers for Disease Control and Prevention (CDC); Stephen M. Shore, Ed.D., Autism Spectrum Consulting; Alison Tepper Singer, M.B.A., Autism Speaks; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA)
Call to Order and Opening Remarks
Thomas Insel welcomed all in attendance to the second meeting of the Interagency Autism Coordinating Committee. He noted that much had happened since the IACC's first meeting on November 30, 2007. Several important research results and autism-related news stories had further raised public interest in Autism Spectrum Disorders (ASD). In addition, work had been progressing on the strategic plan for ASD research, which is one of the responsibilities assigned to the IACC by the Combating Autism Act.
Dr. Insel explained that much of the day's meeting would be devoted to two tasks. One would be to discuss the IACC's role in overseeing ASD-related services. The second would be to discuss the best way to move forward in developing the strategic plan. He then invited two members of the IACC to make presentations regarding the Committee's relationship to ASD-related services.
Presentation by Lee Grossman
Lee Grossman discussed the prospect of forming a Services Subcommittee of the IACC. He noted that when the previous IACC was formed, in 2001, agencies that provide autism-related services were not well-represented on the Committee. As more service-related agencies began attending IACC meeting, Committee members realized that the agencies were not fully aware of how much of their funding went to autism-related services or of how their actions should be coordinated with the actions of other governmental agencies. In response, the previous IACC formed a subcommittee on services. That subcommittee formed an expert workgroup that helped put together a document called the ASD Services Roadmap. The Roadmap noted that ASD-related services need to be delivered across the lifespan, that they need to be coordinated at multiple systems levels, and that provider capacity needs to be increased. It also noted that standards of care need to be developed and that public and private funding for services should be expanded.
Mr. Grossman noted that a Services Subcommittee of the current IACC would consist only of IACC members, but that it could form a workgroup to engage in specific tasks. He noted that the IACC is the proper forum for a thorough discussion of services, and that such a discussion is essential.
Presentation by Ellen Blackwell
Ellen Blackwell noted that the Combating Autism Act called for the IACC to monitor services and supports for individuals with ASD. She also observed that services research was included in the treatment workshop held in January. Before the workshops were held, a request for information (RFI) was issued asking for public input into the workshops. Of the more than 500 responses received, more than half were related to treatment, Ms. Blackwell said. And of the 41 research proposals generated by the four workshops, 13 had a relationship to services and supports.
Ms. Blackwell observed that much remains unknown about the kinds and amounts of services delivered to individuals with ASD and their caregivers. A state-by-state survey of ASD-related services, such as has recently been done for developmental disabilities, would provide a baseline of information about service delivery. Nor does a model exist of the most effective and value-driven services needed for ASD.
If the IACC decides to create a Services Subcommittee, there would be several ways of gathering additional information, Ms. Blackwell said. Town hall meetings could solicit individual opinions, or a new RFI could generate additional input.
Group Discussion of Activities Focused on Services
In response to a question, Mr. Grossman said that more data are needed to support the delivery of services. Though many services are effective, a lack of hard evidence for that effectiveness can block or delay legislation and insurance coverage, with the result that many people who need services do not receive them.
Yvette Janvier emphasized that attention must be given to the trajectories individuals with ASD undergone over the lifespan. Some children improve dramatically, and objective research should explore the reasons for that improvement.
Catherine Rice noted that not only treatments but the implementation of treatments should be the subject of research. Gail Houle said that partnerships with education providers should be emphasized, while Stephen Shore emphasized the need to include people on the ASD spectrum in examinations of services. Margaret Giannini stressed that services should be integrated over the lifespan, so that access to services is seamless.
Dr. Insel asked how the proposed effort would differ from the work of the Services Subcommittee under the previous IACC. Ms. Blackwell replied that knowing what services are currently offered would identify gaps in service delivery and allow individuals and families to find and transition among existing service providers. Mr. Grossman said an examination of services would increase the effectiveness of the money that is being spent and make the case for new legislation and spending. James Battey suggested that an examination of services could show that they save money in the long run by rendering individuals more productive and employable.
Dr. Insel asked which committee members would like to be on the Services Subcommittee, and Dr. Shore, Dr. Giannini, Christine McKee, Patricia Morrissey, Peter van Dyck, Dr. Houle, and Dr. Rice volunteered, along with Mr. Grossman and Ms. Blackwell. Dr. Rice suggested that the subcommittee consider delivering an implementation report that would describe how to convert the Roadmap into action.
Presentation by Joyce Chung
Joyce Chung, the coordinator of the Autism Team at NIMH, summarized the progress made in developing a strategic plan for ASD research since the November 30, 2007, IACC meeting. In December Dr. Insel convened a Strategic Plan Workgroup to offer guidance to the IACC in developing the plan. The workgroup included researchers, service providers, policymakers, individuals and parents affected by ASD, and IACC members. During a December conference call, the group began planning its activities.
Also in December the Autism Team issued a Request for Information (RFI) asking for input on establishing research proprieties for ASD research. In the two and half weeks after the RFI was issued, 542 people responded, suggesting a very wide variety of ideas and offering considerable input on many issues.
In January, four one-day scientific workshops were held on four consecutive days. Each workshop focused on one of four topics -- treatment, diagnosis, risk factors, and biology -- and each workshop received a summary of the RFI responses directed toward that topic. Together, the workshops produced 41 one-page research initiatives as inputs for the development of the strategic plan.
On February 21, 2008, the Strategic Plan (SP) Workgroup met to review the research initiatives and develop guidance for the IACC. The group discussed how the initiatives were related to each other and what research areas might be missing. They then decided to organize the initiatives around questions that people who are affected by ASD might ask. The questions are:
- When should I be concerned about my child's development?
- How can I understand what is happening to my child?
- Why did this happen?
- Which treatments will help my child?
- Where can I turn for services?
- What does the future hold?
The workgroup associated the research initiatives within one or more of these question domains. Dr. Chung concluded her presentation by noting that the Autism Team at NIMH is eager to receive direction from the IACC on the best way to use the research initiatives from the scientific workshops and what next steps would move the process forward in developing the strategic plan.
Group Discussion of Research Initiatives and Questions
Dr. Insel invited the group to consider the next steps the IACC should take given the work done since the November 30, 2007, meeting. Dr. Battey asked whether a portfolio analysis was being done to inventory federal funding related to ASD, and Ann Wagner and Dr. Insel replied such an analysis was well underway and should be completed within a few weeks.
Several IACC members praised the idea of organizing the strategic plan according to questions that people affected by ASD would ask. Duane Alexander noted that an additional question might be focused on the issues associated with adolescents and adults with ASD. Mr. Grossman suggested that questions 4 and 5, related to treatments and services, be given the highest priority, since those are the questions most closely related to people's needs. Jeff Buck asked where research on payment and reimbursement policies fit into the questions, and Ms. Redwood noted that an additional question might be "How do I prevent this from happening?" which is especially likely to be asked by parents with an autistic child who are thinking about having another child. Ms. Blackwell pointed out that another question is "How can I maximize a family member's quality of life?"
Group Discussion of the IACC Strategic Plan Mission, Vision, and Values
Dr. Insel began a discussion of the strategic plan mission, vision, and values by remarking on the great diversity of the autism community, from severely affected individuals to high-functioning adults and all of the families, friends, care-givers, and other stakeholders affected by ASD. He then laid out a set of core values that he suggested could guide the Committee's discussion of what it wanted to accomplish. These core values included: Sense of Urgency, Spirit of Collaboration, Consumer-Focused, Excellence, Partnerships in Action, and Accountability. Dr. Lawler suggested adding efficiency to the list of values, and Dr. Shore emphasized the importance of inclusiveness in working with people on the autism spectrum.
Dr. Insel then displayed several of the mission statements developed by other Federal and private organizations that work on ASD-related issues. In response to his invitation to propose ideas for a mission statement for the IACC Strategic Plan for ASD Research, Ms. Redwood suggested that the mission could be described as rapidly advancing the scientific understanding of autism spectrum disorders in an effort to restore health and help those on the spectrum lead fulfilling and productive lives. Several Committee members proposed additional ideas, including the need for collaboration, the preference for improving health outcomes rather than restoring health, maintaining high standards in research, focusing on outcomes other than health, and inclusion in the community. Alison Singer raised the issue of whether the IACC should draft a mission statement specifically for the strategic plan and another statement for the overall mission of the IACC. Dr. Insel proposed that the Autism Team take the ideas generated by the discussion and craft a mission statement specifically for the strategic plan, to guide the Committee's short-term work.
Group Discussion of the IACC Strategic Plan Next Steps
After lunch, Steve Foote of the NIMH Autism Team led the Committee in a discussion of the next steps that should be taken in developing the strategic plan. He asked how much the IACC should be involved in overseeing the activities of the Autism Team at NIMH and subgroups that the committee decides to form. Also, how best should various stakeholders be involved in the process? And should the IACC hold more frequent meetings to accomplish the large amount of work that needs to be done?
Dr. Morrissey agreed that the 41 research initiatives be organized according to the questions developed by the workgroup. Mr. Grossman stated that more public input on the research initiatives was needed, whether from opportunities for public comment, town hall meetings, or other means. Ms. McKee and Ms. Redwood agreed with Mr. Grossman. Ms. Redwood added that IACC members ought to provide more input on the strategic planning process, especially regarding who would serve on IACC workgroups. She also suggested that additional steps be added to the strategic planning process. Ms. Singer proposed that the SP workgroup be reconvened to evaluate current research efforts related to ASD and relate those efforts to the 41 research initiatives. She also encouraged the committee to observe its top priority of urgency and move quickly to influence the Federal budget. Dr. Janvier asked Dr. Foote to clarify the purpose of the strategic plan.
Dr. Foote stated that the purpose of the strategic plan is to outline priorities for ASD research. He explained that the Combating Autism Act did not create new Federal funding for ASD research. He added that the Federal government supports a large amount of biomedical research, including ASD research. However, at NIH, approximately four-fifths of the annual budget is committed to funding multi-year projects. Dr. Foote suggested that through the strategic plan, the IACC can develop and identify very high research priorities in ASD research that all funders of autism research should work to address in the next few years. Dr. Insel emphasized that a strategic plan is most useful when resources are limited.
After discussion of the need for a thorough inventory of ongoing efforts, including the amounts being spent for those activities, Dr. Insel summarized the comments of IACC members. He stated that the sense of the committee was that a new SP workgroup should be convened that would include some members of the previous workgroup along with some members of the IACC. IACC members could propose individuals to be members of the workgroup, the deliberations of the group should be open to the public, and the group should include members who are well versed in ASD-related research. He then asked the committee to vote on the proposal to convene a new Strategic Planning workgroup, and it was approved.
Dr. Foote stated that the charge to the workgroup would be to review the funding portfolio of ASD research and to develop a proposal about how to proceed with the strategic planning process. Ms. Singer suggested that the workgroup review the inventory of ongoing research and the 41 research initiatives and then recommend prioritization of those initiatives for the IACC to consider in May. Ms. Blackwell recommended that the workgroup identify which initiatives could be consolidated so that the total number under consideration would be reduced by approximately one-half. She also asked what guidance the IACC would provide to the workgroup to inform their deliberations.
Dr. Chung stated that it might be necessary for the workgroup to conduct its meeting as an electronic webinar, because organizing a meeting so quickly would be difficult. Dr. Insel also stated that the Autism Team would gather input about ideas that might not have been included in the 41 research initiatives.
Paula Durbin-Westby stated that accurate and well-informed research into the lives of people on the autism spectrum is needed. Community-based participatory research is especially promising, because then people affected by ASD can be full participants in every stage of the research process. It is particularly important to include people on the autism spectrum as collaborators in research, she said, not just as research subjects.
Michael Frandsen stated that NIH needs to greatly improve its hiring of individuals with disabilities under the Schedule A hiring authority. Besides supporting research on improving mental health, NIH needs to ensure that people with disabilities can contribute directly to its mission. Policies on making the hiring process as inclusive as possible should be developed and effectively implemented.
Dena Gassner stated that current policies are forcing children with ASD to be normal, rather than whole and healthy individuals who are living successfully with a difference. People with ASD suffer from domestic abuse, workplace harassment, and fiscal manipulation, she said, and these acts particularly affect women with ASD. Ms. Gassner also conveyed a statement by her son, Patrick Kelty, who said that after extremely negative experiences with the educational systems in Kentucky and North Carolina, he and his family finally have found a positive educational setting. However, after graduating from high school, he will no longer have the supports that have enabled him to thrive.
Katie Miller stated that diagnostic services must be improved and made available to a wider population. Research should be directed toward how to increase the knowledge of health professionals about ASD. Funding also should be directed toward improving the quality of life for people on the autism spectrum, and additional people with ASD should be on the IACC and its workgroups.
Ari Ne'eman also advocated for additional autistic representation on the IACC and its workgroups, and he urged that research be directed toward measure that will improve the quality of life for autistic individuals. The needs of the adult population with ASD are particularly slighted by service providers and society at large, he said. In addition, the development of genetic tests for autism could lead to selective abortion that would amount to eugenics against the developmentally disabled, he said.
Alexander Plank stated that he represented WrongPlanet.net, a website for people with autism that he started when he was in high school. He said that the focus of research should be on affording autistic citizens a better quality of life rather than on research that could lead to prenatal screening. Public service messages that refer to autism as a "disease" or an "epidemic" are biased against people with autism.
In closing, Dr. Insel asked whether the Committee wanted to have an extra meeting between its scheduled May and November meetings, and he observed that the apparent response was yes. He also asked whether the Autism Team could prepare a draft of the summary of scientific advances required by the Combating Autism Act, and the Committee agreed to that as well. Dr. Insel thanked the Committee for its hard work.
The meeting adjourned at 4:00 p.m. on March 14, 2008.
I hereby certify that the foregoing minutes are accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee