Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process on December 3, 2010
Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Susan Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; Ellen Blackwell,* M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle,* Ph.D., Centers for Disease Control and Prevention (CDC); Geraldine Dawson, Ph.D., Autism Speaks; Lee Grossman, Autism Society; Jennifer Johnson, Ed.D., Administration for Children and Families; Ari Ne'eman, Autistic Self Advocacy Network; Lyn Redwood, R.N., M.S.N., Coalition of SafeMinds; Alison Singer, M.B.A., Autism Science Foundation; Marjorie Solomon, Ph.D., M.B.A., University of California, Davis
*Note: Attended by phone.
Welcome, Introductions, and Approval of the Minutes
The Subcommittee for Planning the Annual Strategic Plan Updating Process met on December 3, 2010 to finalize edits to the 2011 Strategic Plan for ASD Research. Dr. Insel opened the meeting by conducting roll call and the Subcommittee approved the minutes of the previous meeting on November 19, 2010.
Discussion of Updating the Plan – Question 5: Where Can I Turn For Services?
The Subcommittee met to review the addendums to the 2011 Strategic Plan for ASD Research and started with Question 5: Where Can I Turn For Services?. Ms. Ellen Blackwell, who had led the editing process for the chapter's addendum, gave an overview of the suggested revisions and additions. She had added language about significant recent legislation including the Affordable Care Act (ACA) and Mental Health Parity and Addiction Equity Act (MHPAEA) and included references to recent studies focusing on oral health issues for people with disabilities and family support issues. She recommended amending existing objectives to focus on mental health and adding two additional objectives addressing dental needs. She noted that at least two states had recently removed emergency dental treatment from their Medicaid state plans to reduce costs.
Mr. Ne'eman thanked Ms. Blackwell for taking the lead on the chapter after he was unable to do so and noted that expansions to Medicaid under new legislation may increase available services for adults with ASD who do not meet traditional institutional level of care requirements. He said he would like to include an objective calling for research to evaluate and develop program models for this population. Ms. Blackwell noted that the Centers for Medicare & Medicaid Services (CMS) was currently in the process of developing service models for children, youth, and adults with autism and agreed to work with Mr. Ne'eman to include information in the chapter about opportunities under the Affordable Care Act for people with ASD who previously would not have been eligible for home and community-based services.
Dr. Insel asked whether the passage on the Affordable Care Act should include mention of the Cures Acceleration Network (CAN) and the Patient-Centered Outcomes Research Institute (PCORI) and said he would like to see the information on the Mental Health Parity Act modified to focus on the continuing need for research to inform the legislation's implementation. He also recommended consolidating some of the references to new research. Finally, he asked whether the Subcommittee would like to include any information or objectives on the topic of wandering and general safety. The Subcommittee agreed to acknowledge the community's concerns about wandering in the section on new advances in the research area, anchoring it to a 2010 Swedish study examining mortality in people with ASD.1 The Subcommittee on Safety had developed three suggested objectives for the plan, with the objective for Question 5 calling to "develop and test the effectiveness of at least 2 prevention programs (such as first responder training, parent training and individual training) to reduce the occurrence of wandering-related safety incidents in people with ASD by 50% by 2014."
Mr. Ne'eman asked that the objective be amended to note that these prevention programs would not infringe upon an individual's right to self-determination and freedom of mobility. Dr. Dawson noted that safety and mortality risk could extend to a range of issues in addition to wandering, such as epilepsy and heart disease, and that the objective could be crafted to relate to health promotion efforts mentioned in chapter 3. Mr. Ne'eman added that he would like to see restraint and seclusion mentioned specifically. The Subcommittee returned to Ms. Blackwell's recommended edits to the objectives and agreed to revise short-term objective C on implementing coordinated models of community-based service provision to include at least one project aimed at the needs of transitioning youth and at least one study evaluating coordination between state and local mental health agencies serving people with ASD. Mr. Ne'eman asked for language to be added clarifying that cost-effectiveness research would not include measures quantifying the value of one's life based on level of disability. He also recommended including an objective focused on peer-supports. Dr. Dawson noted Dr. Connie Kasari's 2010 paper on peer-mediated intervention and Dr. Phil Strain's work on the LEAP model as possible additions to the chapter.2, 3 The Subcommittee then discussed whether peer-supports would be best included in the chapter on services or intervention. Dr. Dawson, Mr. Ne'eman, Ms. Alison Singer, and Ms. Blackwell volunteered to craft language about peer-supports via email.
Dr. Hann then reviewed the agreed upon edits for the chapter: Mr. Ne'eman and Ms. Blackwell would develop language for the introduction on Medicaid section 1959 as it relates to new opportunities for people with ASD who do not meet institutional level of care, the passage on new advances in research would be condensed, a new objective on safety and wandering would be added, necessary references would be added to the section on research gaps, short-term objective C would be revised as per Ms. Blackwell's recommendations, and a new objective on dental health issues would be added. She noted that all edits would have to be finalized over the next week.
Discussion of Updating the Plan – Question 6: What Does the Future Hold Particularly for Adults?
Ms. Blackwell then led the Subcommittee through recommended changes to Question 6: What Does the Future Hold Particularly for Adults?. She had identified several new studies to include in the research update section including studies on family stress, behavioral characteristics of adults, high-functioning individuals and academic achievement, recreational services, medications for youth and adults, underdiagnosis of autism in the adults, and an environmental scan of ASD interventions. Several gap areas were indicated including a need for more research on adults with ASD, particularly older adults, the strain on state service systems due to the economic downturn, and the need for research on the effectiveness of day programs. She recommended amending long-term objective C on comparative effectiveness research to include a focus on day programs. In addition, she recommended including a new research opportunity noting the importance of incorporating input from people with ASD in the research process.
Dr. Marjorie Solomon indicated that she had written up a summary of research by Dr. Marsha Seltzer indicating that when transitioning from high school, higher-functioning individuals were often at greater risk than their lower-functioning peers because of the drop-off in available services.4 Dr. Dawson said that the Strategic Plan should include mention of the 2010 conference co-sponsored by NIH on older adults with autism. Dr. Jennifer Johnson suggested looking to the disability community for their work on aging and noted that aging caregivers is a related problem that should be given consideration. Ms. Blackwell noted that the Affordable Care Act will also impact coverage for people that are dually eligible for both Medicare and Medicaid.
Dr. Insel expressed his opinion that most the studies listed were not "game-changers," significantly altering the research landscape, and including them in the Plan lessened the sense that adults with ASD were an understudied group. The Subcommittee agreed to pare down the number of studies, relocating those more appropriate to other chapters, and to start the new developments section by emphasizing the dearth of studies. Mr. Ne'eman said that the section lacked information on major policy developments and focused too heavily on individual studies. He agreed to write a passage on the efforts to expand the Aging and Disability Resource Center (ADRC) after the Subcommittee agreed it would be a useful addition. He also recommended including a reference to an executive order instructing renewed effort across the government to hire employees with disabilities.
Addressing the gap area section, Mr. Lee Grossman asked that more information be added about issues facing aging caregivers, including end-of-life planning and transitioning adults with ASD into new settings after the death of a caretaker. Dr. Insel recommended indicating that public comments to the IACC had also reflected the community's call for more research on the adult population. The Subcommittee discussed some changes to the syntax and chose not to include the studies on family stress and underdiagnosis in adults. Dr. Johnson asked to include language indicating that many of the research questions contained in the chapter were being addressed in the broader disability community. A reference to including more higher-functioning people in research was changed to include the spectrum as a whole.
The Subcommittee discussed adding a point to the research opportunities section indicating the importance of including direct input from people with ASD throughout the scientific process. Ms. Redwood recommended including mention of family members, as well, and Mr. Ne'eman asked that they include a focus on the use of participatory action models, designed to engage the community throughout the process. He asked that they repeat language in chapter 1 identifying family members as "distinct and separate stakeholders" from individuals on the spectrum, but other members of the Subcommittee found the phrase too cumbersome and redundant to language in other chapters. They agreed to include additional information about community-based participatory research models in the cross-cutting themes. The Subcommittee also expanded long-term objective C to include comparative effectiveness research related to community housing, transitioning to adulthood, including day programs, post-secondary education, and employment, and addressing the needs of older adults with ASD. Dr. Hann reviewed the agreed upon changes and the Subcommittee turned to Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Discussion of Updating the Plan – Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Dr. Coleen Boyle reviewed the suggested edits to the Question 7 addendum. She proposed including several advances in the field including the growth of the National Database for Autism Research (NDAR), the expansion of major biobank repositories such as the Simons Simplex Collection, Autism Genome Project (AGP), and Autism Genetic Resource Exchange (AGRE), and the emphasis on transitioning to electronic health records under the Affordable Care Act. She added additional information about the CDC's Autism and Developmental Disorders Monitoring (ADDM) Network and expanded the communication and dissemination section by including recommendations from the IACC Services Subcommittee Workshop and information on the Agency for Health Research and Quality's (AHRQ) work translating research into practice. She also recommended including a passage on the pharmaceutical industry's investments in drug research for autism. Dr. Boyle recommended five new objectives and modifications to two existing objectives. She said that the staff from the Office of Autism Research Coordination (OARC) would assist by providing necessary figures and developing passages on the gap left as American Recovery and Reinvestment Act (ARRA) funding ends and encouraging diversity in the research workforce.
Dr. Insel recommended noting that electronic health records will provide an opportunity for stream-lining data collection and the development of quality metrics related to service needs.
Ms. Singer presented the two wandering-related objectives proposed by the Subcommittee on Safety. The first called for analyses using existing datasets to determine the rate of injuries and death for people with ASD compared to the general population. The second called for supplementing national surveys to collect data on different aspects of wandering-related incidents including reasons for the incident and outcomes.
Mr. Ne'eman supported both objectives but recommended broadening the second to include other safety issues as well. The Subcommittee discussed whether the objectives would be better suited for Question 5 and Ms. Singer said that the Interactive Autism Network (IAN) , mentioned in Question 7, might be a good resource for conducting a wandering survey. Mr. Ne'eman noted the importance of conducting large population-based studies to determine the true prevalence of ASD among adults in the U.S. The Subcommittee noted that this objective was covered in other chapters. The Subcommittee accepted the recommended changes to the addendum and started to review the Plan's Introduction.
Discussion of Updating the Plan – Introduction
Ms. Redwood reviewed the suggested revisions to the Introduction, which included the addition of a passage on President Obama's speech to the NIH wherein he identified autism as one of three targeted health conditions. The first paragraph would be brought before the full committee for a vote because the Subcommittee was in disagreement over the passage, particularly the statement that "autism is more common in the United States than childhood cancer, juvenile diabetes, and pediatric AIDS combined." The Subcommittee decided to remove a later reference to "identifying mechanisms of injury" in favor of "mechanisms by which complex genetic and environmental factors play a role in causation." The committee then reviewed a passage characterizing the heterogeneity of the spectrum. Two versions had been put forward: one noting that some individuals will need 24-hour care and supervision while the other focused on the level of services necessary for the individual to live in a preferred home and community-based setting. The group agreed that these options should be presented to the full committee for a decision. The same was done for a passage calculating the monetary cost to society of autism. Mr. Ne'eman objected to the sense that autism was a financial burden to society while others noted the importance of providing a figure to present a compelling estimate of the scope of the issue.
Discussion of Updating the Plan – Question 1: When Should I Be Concerned?
The Subcommittee then reviewed Question 1: When Should I Be Concerned?, which included minimal edits to the text of the addendum, two new objectives, and three revisions to existing objectives. The two new objectives included a study to evaluate the positive predictive value and clinical utility of chromosomal microarray genetic testing for ASD and a workshop examining the ethical, legal, and social implications (ELSI) of ASD research. The recommended revisions had been modified to include evaluating behavioral and biological markers for their usefulness in improving early identification. The Subcommittee discussed whether the ELSI studies should be a component of a research study or an independent endeavor. Mr. Ne'eman suggested including an ELSI aspect in the crosscutting themes and Dr. Insel recommended consulting Dr. Alan Guttmacher because of his expertise in the area.
Discussion of Updating the Plan – Question 2: How Can I Understand What Is Happening?
The subcommittee broke for lunch and returned to address Question 2: How Can I Understand What Is Happening?. Marjorie Solomon had drafted the addendum and identified a collection of studies on brain and circuit abnormalities. The Question 2 addendum also included a focus on the need to further study metabolic and immune system interactions and research opportunities related to metabolomics and children who regress during fever. Two new objectives were proposed, one on autistic regression and the other on studies of brain and connectivity abnormalities that may underlie autism. Dr. Dawson recommended including a reference to a study by Dr. Antonio Persico on post-mortem virus findings in the recent advances section.5 Dr. Hann noted that there was an existing research opportunity on research into language regression and the Subcommittee agreed to expand the opportunity to include all forms of regression. The question of fever involvement in ASD regression was incorporated into short-term object A on identifying mechanisms that may influence ASD during prenatal-postnatal life. These modifications to the research opportunities eliminated the need for new objectives. Dr. Solomon expressed her concern that much of the research related to Question 2 in the Portfolio Analysis could not be classified according to the plan and noted that this should be addressed in subsequent years. Ms. Singer said that the Subcommittee on Safety had recommended including a new objective to study the underlying biology of wandering but noted that it could be included into short-term objective E on the underlying biology of co-occurring disorders. The Subcommittee decided not to include the research opportunity on metabolic pathway perturbations. Dr. Hann summarized the changes to the chapter and the Subcommittee moved to Question 3: What Caused This To Happen and Can It Be Prevented?
Discussion of Updating the Plan – Question 3: What Caused This To Happen and Can It Be Prevented?
Dr. Dawson led the review summarizing the new research advances, findings from the Autism Treatment Network (ATN), and the meeting held by Autism Speaks and the National Institutes of Environmental Health Sciences (NIEHS) on accelerating environmental factors research. The addendum also noted new technologies such as stem cells and new bioinformatic platforms to map genes. It cited the National Vaccine Advisory Committee's (NVAC) indication that regressive autism was of particular research interest and summarized the disparity between genetic and environmental research funding. Mr. Ne'eman put forth that the chapter title should be simply "What Caused This To Happen," eliminating mention of prevention. The Subcommittee felt that this issue should be discussed by the full committee.
Dr. Dawson then reviewed Question 3 gap areas, which included the need for suitable model systems to study environmental risk factors and greater collaboration between genetic and environmental science investigators. She also cited the need for focused work on the role of epigenetics and additional postmortem brain tissue. She proposed five objectives covering epidemiologic studies of special populations to understand environmental risk factors, a workshop on the use of bioinformatic approaches to studying environmental risk factors, studies of the microbiome, investigation of epigenetic influences, and research to facilitate the development of animal model systems. Dr. Dawson noted that Dr. Linda Birnbaum had expressed her view that studies of the microbiome and autism were premature. She said that it would be helpful to have her input at the full committee meeting. Ms. Redwood spoke about including a call for research on oxidative stress and redox homeostasis, citing the work of Dr. Jill James and Dr. Mark Noble. The Subcommittee agreed to add the concept of oxidative stress to Question 2, short-term objective A and reviewed Question 4: Which Treatments and Interventions Will Help?.
Discussion of Updating the Plan – Question 4: Which Treatments and Interventions Will Help?
Dr. Dawson had been the lead drafter of the addendum and reviewed the document. She cited several new studies on a range of topics including drug interventions and social skills training. She noted that, as previously noted, Dr. Kasari's study on peer interventions would be added. Gap areas highlighted the need to identify subgroups of individuals who are responsive to specific medication or intervention approaches, the continuing need for autism intervention networks, and the need to address health disparities for people with autism. She proposed three new objectives that included multiple community-based studies assessing the effectiveness of interventions in community settings, multiple studies on interventions for nonverbal individuals, and studies focused on health promotion and prevention of secondary condition such as obesity and co-occurring psychiatric and medical conditions.
The Subcommittee discussed Dr. Kasari's study and Ms. Singer noted that it was an important example of disseminating research to effect real change for people in the community. Dr. Solomon added that it was a large-scale implementation of an evidence-based treatment in a school system and that it can be difficult for schools to implement a manual that an experimental psychologist would use in a randomized-controlled trial. Mr. Ne'eman suggested mentioning the Department of Education Institute for Education Sciences (IES) evaluation of the evidence base for the Lovaas model in the advanced section. IES found that the model had potentially positive effects on cognitive development and no discernible effect on language competencies, social/emotional development, or functional abilities. Dr. Solomon noted that there would be a special interest group on school-based intervention presenting at the International Meeting for Autism Research (IMFAR).
Mr. Ne'eman questioned whether a reference to a congressional briefing belonged in the plan as it did not present new information or ideas. The Subcommittee discussed whether it was appropriate to highlight the activities of certain advocacy groups and not others. Dr. Solomon said that the committee should address the larger issue of what events are notable enough to include in the Plan. Ultimately, the Subcommittee decided to present the issue before the full committee for resolution. They then approved the other edits to the addendum and returned to some of the items that members had been asked to draft over lunch.
Discussion of Language Drafted During the Meeting
Dr. Solomon read a long-term objective she had prepared with Mr. Ne'eman for Question 6 that prioritized comparative effectiveness research on transitioning from secondary education. The Subcommittee approved the objective and Ms. Singer read the passage she had prepared describing the Swedish mortality study of individuals with ASD. She proposed an objective to "develop and test the effectiveness of at least two programs to prevent wandering and to prevent the negative consequences of wandering, such as first responder training, to reduce the occurrence of wandering-related safety incidents in people with ASD by 50 percent by 2014, without adversely affecting the rights of adults on the autism spectrum to self-determination or freedom of mobility."
The Subcommittee discussed the proposed objective and Ms. Blackwell recommended broadening the objective to other community health and safety issues to avoid overlooking other causes of death outside of wandering. Mr. Grossman agreed that limiting the objective solely to wandering was neglecting an opportunity to address other pressing health and safety concerns. The Subcommittee agreed to draft language and discuss the matter before the full committee. Mr. Ne'eman presented his language on community-based participatory research and language he had drafted with Dr. Solomon for a cross-cutting theme on self-determination. Ms. Singer said that they should indicate that self-determination should be used "when possible" because some people on the spectrum are not capable of applying self-determination. Ms. Blackwell disagreed, saying that everyone with a disability can lead a self-determined life and Dr. Johnson said that the Administration on Developmental Disabilities (ADD) was currently funding a project on self-determination, which could serve as a helpful resource on the subject. She recommended including a definition of the term and Mr. Ne'eman clarified that self-determination did not mean that an individual would do everything for himself/herself, but rather that s/he would be supported to make his/her own decision to the maximum extent possible. Mr. Grossman said that the principle of self-determination was a fundamental human right and Mr. Ne'eman, Dr. Johnson, and Ms. Singer agreed to collaboratively develop a crosscutting theme on self-determination.
Action Items and Adjournment
Dr. Hann instructed the Subcommittee to have their final drafts to present to the full committee prepared by December 8th in preparation for the December 14th meeting. With that, the meeting was adjourned.
These minutes of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the subcommittee on November 17, 2011.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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2 Kasari C, Gulsrud AC, Wong C, Kwon S, Locke J. Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. J Autism Dev Disord. 2010 Sep;40(9):1045-56.
4 Taylor JL, Seltzer MM. Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. J Autism Dev Disord. 2010 Jul 17.
5 Lintas C, Altieri L, Lombardi F, Sacco R, Persico AM. Association of autism with polyomavirus infection in postmortem brains. J Neurovirol. 2010 Apr;16(2):141-9.