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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Question 5 and 6 Planning Group, Conference Call on September 30, 2013

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Question 5 and 6 Planning Group convened a conference call on Monday, September 30, 2013, from 10:35 a.m. to 1:17 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Susan Daniels, Executive Secretary, IACC presided.

Participants:

David Mandell, Sc.D., Chair, University of Pennsylvania; Susan Daniels, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC) (NIMH); Idil Abdull, Somali American Autism Foundation; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Jan Crandy, Nevada State Autism Treatment Assistance Program; Laura Kavanagh, M.P.P., Health Resources and Services Administration (HRSA); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); Larry Wexler, Ed.D., U.S. Department of Education (ED)

Roll Call and Opening Remarks

Dr. Susan Daniels welcomed the Planning Group and members of the public and called roll. She said that this Group was charged with the update for Question 5 (Where Can I Turn for Services?) and Question 6 (What Does the Future Hold, Particularly for Adults?) of the IACC Strategic Plan. She noted that the goal of this call was to evaluate the status of the Questions 5 and 6 objectives, by reviewing the funding and project information documents prepared by the Office of Autism Research Coordination (OARC). In the second conference call, external subject matter experts would be invited to work with the Planning Group to qualitatively assess the scientific progress made on Question 7 objectives and to identify research gaps.

Dr. Daniels reviewed the meeting materials, prepared by the OARC, all of which are available on the IACC website. The materials included: Compiled Objective Charts for Questions 5 and 6 (2008 to 2012), IACC Strategic Plan Funding Summary Sheets for Questions 5 and 6, Project Lists for Questions 5 and 6 from the IACC Portfolio Analyses (2008-2012), subcategory pie charts by year, and Strategic Plan pie charts by question and year. Projects were coded to Strategic Plan objectives in the Compiled Objective Charts. Dr. Daniels explained that a recommended budget had been provided for each objective in the IACC Strategic Plan in accordance with the Combating Autism Act in order to provide guidance to the agencies regarding how much it might cost to implement objectives developed by the committee.

Each objective was categorized using a "stoplight" approach: a red highlight indicated that zero projects and zero funding were associated with the Strategic Plan objective in a given year or across all 5 years.; a yellow highlight indicated that some projects related to the Strategic Plan objective had been funded, but the funding amount was less than the IACC recommended budget; and green indicated that the recommended budget for the Strategic Plan objective had been met. Dr. Daniels noted that the IACC Portfolio Analyses for 2011 and 2012 were not yet completed, so the data provided to the Committee for the call were still draft data, but that the data would be finalized soon and were not expected to significantly change.

Dr. Daniels also explained that for on objectives where projects were listed but no funding was indicated, that the projects may either have received all of their funding in a lump sum in the first year with no increments in following years, or that projects could be in a no cost extension, where the project continues, but is only using funds that were allocated in a previous year (no new funding was provided in that year). She also noted that there was a subcategory of objectives called "Other," which included research projects and funding that did not map to specific Question 5 or Question 6 objectives, and that this represented projects that were not associated with the gap areas identified in the objectives, but instead represented other types of core projects funded by agencies and organizations.

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Question 5

Dr. Daniels suggested that the Group review each of the objectives to determine what has been accomplished, what gaps remain, and any barriers. (Refer to Compiled Objective Chart for Question 5 (Services) 2008-2012, PDF – 148 KB)

5.S.A . Support two studies that assess how variations in and access to services affect family functioning in diverse populations, including underserved populations, by 2012. Dr. Daniels pointed out that based on Portfolio Analysis data the overall recommended budget for this objective had been met. Ms. Idil Abdull said that the two projects proposed for this objective were not adequate, and that in her opinion, little progress had been made. She said that the objective was also too broad to be useful. Ms. Jan Crandy said that they had spent the requisite amount but they had not fully answered this question. Dr. Catherine Rice said that this objective was focused on research, not capacity issues. They should focus on models and research for service provision. Perhaps they could discuss the capacity issues in the text. Ms. Laura Kavanagh said that these projects were funded by HRSA and did include underserved populations. She suggested that the Group say that the initial objective as written had been achieved. However, additional research needs had been identified. Dr. Daniels reminded the Group that the point of this call was simply to address how well the objectives had achieved in terms of projects funded. In the next call, outside experts would help identify overall progress made in the field and describe any gaps.

5.S.B Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014. Dr. Daniels pointed out that based on Portfolio Analysis data the overall recommended budget had been partially met. Ms. Crandy said that they had conducted more than one project, thus fulfilling the requirement to support at least one project on this topic. Mr. Scott Michael Robertson said that though there were several projects, this objective had received too little funding. Ms. Crandy said that the specific studies did not address the intent of this objective. Dr. Sally Burton-Hoyle agreed that issues like housing, employment, and quality of life (self-direction) were not addressed by these studies. Dr. Daniels said that the Portfolio Analysis might not be able to capture information on topics such as housing and employment, because those topics might be addressed by agencies not included in the current portfolio analysis, such as Department of Labor or the department of Housing and Urban Development. Ms. Kavanagh said that HRSA is supporting projects that focus on transition, which could encompass these other areas of self-direction. The Group agreed that additional information might be needed to evaluate progress on this objective. Dr. Daniels said that OARC could check to see if there are any other relevant initiatives at other agencies.

5.S.C Implement and evaluate five models of policy and practice-level coordination among State and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, (which may include access to augmentative and alternative communication [AAC] technology), with at least one project aimed at the needs of transitioning youth and at least one study to evaluate a model of policy and practice-level coordination among State and local mental health agencies serving people with ASD, by 2015. The overall recommended budget had been partially met, according to Portfolio Analysis data. Ms. Crandy said that while progress had been made on this objective, they had not fully achieved it. In fact, they might not have covered all of the relevant questions. Ms. Kavanagh noted that roughly 15 projects from 2010 were multiyear projects funded by HRSA, but that this funding was not reflected in the budget numbers for succeeding years. These projects were primarily state demonstration grants. She said that these were not research projects per se, which had been the reason that HRSA and the committee had decided the previous year to remove them from succeeding years of the Portfolio Analysis. However, the projects were being used to evaluate innovative models of care, so these projects did address this objective in some respects.

Ms. Kavanagh suggested that they include a note about this information in the text. Dr. Daniels said that it was a common difficulty to categorize some projects because of overlap between questions or objectives. Ms. Kavanagh said that a more qualitative approach might be necessary to discuss progress on these types of objectives. Ms. Abdull said that for this analysis, they should include projects that addressed the objective, regardless of whether a project was considered research, policy, or services. Dr. Daniels and Ms. Kavanagh agreed to work offline to better identify this information. The Group discussed how the CMS' "State of the States" report could be included in this objective. The Group agreed that progress has been made on this objective but more funding is needed.

5.S.D Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. The overall recommended budget for this objective has been partially met, according to Portfolio Analysis data. Dr. Daniels noted two studies that address this objective. One is on wandering and elopement and the other is on victimization, pragmatic language, and social/emotional competence. The Group also noted a follow-up study on excess mortality in ASD. Dr. Daniels said that the mortality follow-up study was included under Question 7 but they could include a note about the study in the Questions 5-6 text. The Group agreed that more work was needed on this objective. Also, while the studies that have been funded, they don't address all issues within this objective.

5.L.A Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013. The overall recommended budget for this objective has been partially met, according to Portfolio Analysis data. The Group noted that this is a very broad objective, but that a lot of research is being done. Ms. Abdull said that the requirement of diverse community settings had not been adequately addressed. Dr. Daniels noted that this objective should have been coded as "green," given that that the objective had been met the recommended budget. However, the Group agreed that additional work was needed, particularly on the issue of diversity.

5.L.B Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015. The overall recommended budget for this objective has been partially met. With regard to this objective, Dr. David Mandell said that there was ongoing research. However, the research addressed efficacy, not cost-effectiveness. Ms. Crandy said that they had not addressed this objective with regard to all ages. Dr. Mandell suggested supplemental add-ons to existing trials to specifically look at cost effectiveness. Dr. Daniels said that this could be discussed during a later call. The Group agreed that the work on this objective was far below expected.

5.L.C Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, to benefit the spectrum of people with ASD and to promote interdisciplinary practice by 2015. The overall recommended budget for this objective had been met, according to Portfolio Analysis data. Ms. Crandy said that there had been much work toward this objective, but they have not met the need. Ms. Kavanagh said that the bulk of HRSA's funding has been for inter-disciplinary pre-service and in-service training. She said that she believed that funding for those projects was reflected in 2010. In subsequent years, they focused on more research oriented aspects in the training programs. This included 43 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 10 Developmental Behavioral Pediatrics training programs. Dr. Larry Wexler said that this objective was focused on research on training programs. The Department of Education funds training programs, not research on training. Dr. Daniels said that in the last year the Committee had provided additional guidance to include more innovative training programs and evaluation of these programs. In other word, the objective could include projects whose aim was to improve training, not to continue to deliver standard training. The Group agreed that in terms of funding goals and projects, this goal has been met. However there is a need to continue to fund this area. There are remaining significant workforce needs, especially with regard to paraprofessionals.

5.L.D Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. The overall recommended budget for this objective has been partially met, according to Portfolio Analysis data. Ms. Abdull said that the initial recommended budget for this objective was small to start with and had not been met. She added that the issue of obesity in individuals with ASD should be included in this objective. It is common for individuals with ASD to overeat and become obese. However, CMS waivers don't really support people with autism who are obese to help them get active, she said. Ms. Kavanagh said that in 2013 HRSA was funding a healthy weight research network, which will address research issues related to obesity. Dr. Daniels noted there was a small NIH grant in 2011-2012 focused on reducing obesity risk in children with developmental disabilities. There is also an NIH study on the effects of bicycle training, which may touch on the issue of obesity. Ms. Abdull said that more research is needed on obesity and services for obese individuals in this population are needed. There should also be an effort to address more diverse and socioeconomic populations. Dr. Daniels said that there might be some overlap between feeding/obesity issues and gastrointestinal comorbidities. The Group agreed that more funding and research is needed.

5.L.E Support three studies of dental health issues for people with ASD by 2015. This should include: one study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment; one study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD; one study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. The overall recommended budget for this objective has been met, according to Portfolio Analysis data. Mr. Robertson noted that while the funding for this objective seemed adequate, the projects assigned to this objective were primarily focused on children. Ms. Abdull said that there did not appear to be any training projects for dental staff. She said that this is a very big problem, especially with children. More training was needed for dental professionals to become familiar with problems they may encounter with patients with ASD. Ms. Kavanagh said that they do try to include dental professionals as part of the LEND program but that this was a difficult group to recruit. Ms. Abdull suggested that awareness among the dental community might be a problem. Dr. Rice said that this could be useful for all medical professionals, particularly with regard to comorbidities. The Group agreed that there was a need for increased public awareness of this issue and resources for dentists. They also agreed that while funding is on track, adult services needed to be addressed.

Not specific to any objective (Other) The Group felt that some of these projects could be better classified in other objectives. Dr. Daniels said that the funders, who provide and/or review coding assignments during the Portfolio Analysis process, did not believe that these projects/studies fit any of the objectives. Group members asked to review these projects to determine if they could be better captured under other objectives, particularly training. Dr. Daniels said that OARC could provide a list of all training projects under "other."

Dr. Wexler mentioned the recent award of several PROMISE program (Promoting Readiness of Minors in Supplemental Security Income) grants, which are aimed at fostering improved health, education, and post-secondary outcomes for children ages 14-16 who receive Supplemental Security Income. Those grants would be included in future portfolio analyses.

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Question 6

The Planning Group discussed the progress on Question 6 objectives based on funding and the number projects (Refer to Compiled Objective Chart for Question 6 (Lifespan) 2008-2012, PDF – 144 KB)

6.S.A Launch at least two studies to assess and characterize variation in the quality of life for adults on the ASD spectrum as it relates to characteristics of the service delivery system (e.g., safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) and determine best practices by 2012. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. Dr. Daniels noted that the language of this objective had changed with time. Ms. Abdull said that they had fallen well short of the recommended budget. Mr. Robertson said that the upward trajectory of funding (and the number of projects) was a positive sign, but that said the funding is still not adequate. Ms. Abdull said that the funding of these projects was very small. Dr. Daniels noted that research related to adults with autism is a relatively new area of research. In fact, the first IACC Strategic Plan did not include Question 6. The focus on adults has evolved over time. This may partially account for the small budget and projects, but would potentially increase over time as the field grew. Dr. Burton-Hoyle said that the projects do meet needs, but more work is needed. Ms. Crandy said that they needed to look at the lifelong cost for those who did and did not get early intervention. Mr. Robertson noted that some long term studies have been conducted, but they had not addressed all of the elements of the objective. Ms. Abdull noted that there were no studies on safety for adults with ASD. That

6.S.B Evaluate at least one model, at the State and local level, in which existing programs to assist people with disabilities (e.g., Social Security Administration, Rehabilitation Services Administration) meet the needs of transitioning youth and adults with ASD by 2013. The overall recommended budget for this objective was partially met. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. Ms. Crandy said that the objective has been achieved in terms of the number of projects, but not in terms of funding. Dr. Daniels said that both projects in this objective were related to vocational rehabilitation. Ms. Abdull noted that no work has been done related to Social Security, so only half of the objective had been investigated. The Group agreed that part of the objective had been met but more work was needed, particularly on Social Security.

6.S.C Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, and track outcomes with consideration of ethical issues (insurance, employment, stigma) by 2015. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. The Group agreed that the work on this objective is seriously lagging with only one project and $56,000 spent out the recommended budget of $8.4 million.  Dr. Rice said that she was not aware of any tools to identify adults. She also noted that with the change in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), projects about adapting the DSM-5 to adults would fall under this objective. The Group agreed that very little work had been done on this objective and much more work was needed.

6.S.D Conduct at least one study to measure and improve the quality of lifelong supports being delivered in community settings to adults across the spectrum with ASD through provision of specialized training for direct care staff, parents, and legal guardians, including assessment and development of ASD-specific training, if necessary, by 2015. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. The Group noted that progress on this objective is seriously lagging, with total spending of $619,163 out of the recommended $7.5 million. Mr. Robertson noted that there were no new projects started in 2011 or 2012. Ms. Crandy said that the projects do not address the range of issues in this objective. In addition, the focus is on older adults; individuals between transition age and older age are missed, said Dr. Burton-Hoyle. They agreed that this objective falls far short of the recommendation.

6.L.A Develop at least two individualized community-based interventions that improve quality-of-life or health outcomes for the spectrum of adults with ASD by 2015. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. Ms. Abdull noted that older nonverbal adults were not included in this objective. Dr. Daniels said that this may be included in Question 4, where there is an objective specifically focused on development of interventions and services approaches for nonverbal individuals. Ms. Abdull said that that they should not make the assumption that all adults with ASD are high functioning. In addition, information is needed on housing and unemployment. Ms. Abdull suggested that they seek data on these issues from the Departments of Labor and Urban Housing. Mr. Robertson said that the research was at an adequate level in terms of focus. The Group agreed that progress on this objective was promising but more work is needs to be sustained. There was concern that the level of funding had decreased over time.

6.L.B Conduct one study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. Ms. Crandy said that this is objective is an important topic. They did meet the goal of one study. However, they haven't answered all of the questions in this area. More research is needed. Ms. Crandy said that long-term outcome studies are needed. Dr. Daniels said that there was some overlap between this objective and 6.L.B. The Group agreed that work is moving in the right direction and needs to be sustained with additional work.

6.L.C Conduct comparative effectiveness research that includes a cost-effectiveness component to examine community-based interventions, services, and supports to improve health outcomes and quality of life for adults on the ASD spectrum over age 21 by 2018. Topics should include: community housing for people with ASD; successful life transitions for people with ASD, including from post-secondary education to adult services, employment, sibling relationships, and day programs; and meeting the service and support needs of older adults with ASD. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. However, the number of projects and the level of spending were well below recommendations. The Group agreed that there had not been enough studies or funding for this objective. They noted that housing is a large problem for adults with ASD. Work also is needed on service and support needs of older adults as well. The Group agreed that this objective falls far short of the recommendation

6.L.D Conduct implementation research to test the results from comparative effectiveness research in real-world settings, including a cost-effectiveness component to improve health outcomes and quality of life for adults over 21 on the ASD spectrum by 2023. The overall recommended budget for this objective was partially met, according to Portfolio Analysis data. The Group agreed that very little had been done with regard to this objective (implementation research in a real-world setting). They considered the status of this objective to be well below committee recommendations. They also asked about whether the data could be amended to include more "non-research"-based programs that they had discussed and felt were relevant to  the Questions 5 and 6 objectives. Dr. Daniels noted that the previous year the IACC had specifically requested that the OARC be more stringent in including only research-based projects in the Portfolio analysis, resulting in the adjustments that were made in 2011 and 2012, so this would be a change back in the opposite direction. She suggested that this should be raised in a full committee meeting in the future.

Mr. Robertson volunteered to draft the text for Question 6 and Ms. Crandy volunteered to draft the text for Question 5.

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Adjournment

The conference call was adjourned at 1:17 p.m.

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Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/ November 6, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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