IACC Strategic Plan Update Question 5 and 6 Planning Group Conference Call - November 13, 2013

Topic	Topic Description
Date:	Wednesday, November 13, 2013
Time:	10:30 a.m. to 12:30 p.m. Eastern
Agenda:	The planning group for Questions 5 and 6 (Services and Lifespan) will discuss updates for the IACC Strategic Plan.
Place:	No in-person meeting; conference call only
Conference Call:	Dial: (800) 369-2130 Access code: 5485168
Materials:	Meeting materials
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 6182A Rockville, Maryland 20852 Phone: (301) 443-6040 E-mail: IACCPublicInquiries@mail.nih.gov
Please Note:	The conference call will be open to the public in listen-only mode. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call, please e-mail HelpDeskIACC@gmail.com or call the IACC Technical Support Help Line at 415-652-8023. Accommodations Statement: The meeting will be open to the public via conference call. Individuals who participate by using this electronic service and who need special assistance such as captioning or other reasonable accommodations should submit a request to the Contact Person listed on this notice at least 3 days prior to the meeting. Schedule subject to change.

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No in-person meeting; conference call only. The materials for the meeting can be found here.

Time	Event
10:30 a.m.	Roll Call and Opening Remarks Susan Daniels, Ph.D. Acting Director, Office of Autism Research Coordination, National Institute of Mental Health Executive Secretary, IACC
10:40 a.m.	Discussion of Progress Toward Meeting Strategic Plan Question 5 Objectives – "Where Can I Turn for Services?" (Services) Question 6 Objectives – "What Does the Future Hold, Particularly for Adults?" (Lifespan Issues)
11:55 a.m.	Discussion of Progress Toward Meeting Question 5 Aspirational Goal: "Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD." Question 6 Aspirational Goal: "All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports."
12:25 p.m.	Wrap-up and Next Steps
12:30 p.m.	Adjournment

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• Roll Call and Opening Remarks
• Discussion of Question 5 IACC Portfolio Analysis Documents and Strategic Plan Progress
• Discussion of Question 6 IACC Portfolio Analysis Documents and Strategic Plan Progress

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 Wednesday, November 13, 2013, from 10:36 a.m. to 1:17 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. David Mandell, SC.D., Chair, 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 Abdul, Somali American Autism Foundation; Brian Boyd, Ph.D., M.Ed., University of North Carolina; Sally Burton-Hoyle, Ed.D., Eastern Michigan University; Nancy Cheak-Zamora, Ph.D., M.A., University of Missouri; Denise Dougherty, Ph.D., Agency for Healthcare Research and Quality (AHRQ); Shantel Meek, M.S., Administration for Children and Families (ACF) (representing Linda Smith); Catherine Rice, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D., M.S. Hyg.); Scott Michael Robertson, M.H.C.I., The Autistic Self Advocacy Network (ASAN); Alison Singer, M.B.A., Autism Science Foundation (ASF); Aubyn Stahmer, Ph.D., University of California, San Diego; Zachary Warren, Ph.D., M.S., Vanderbilt University

Roll Call and Opening Remarks

Dr. Susan Daniels welcomed the Planning Group and members of the public, and called roll. The call participants briefly introduced themselves. Dr. Daniels 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 of the Planning Group was to qualitatively evaluate the scientific progress made on the Questions 5 and 6 objectives, and to identify any gaps with the help of external experts. In addition, the Group was to discuss progress made toward the aspirational goals of Questions 5 and 6.

Discussion of Question 5 IACC Portfolio Analysis Documents and Strategic Plan Progress

Dr. Daniels reviewed meeting materials prepared by the Office of Autism Research Coordination (OARC) to provide funding and project information for Planning Group reference. All of the materials are available online. The materials included: Compiled Objectives (cumulative funding) Tables, Project Data Tables (2008-2010), and Conclusions Tables. The Compiled Objectives (cumulative funding) Tables showed the alignment of funding across years (2008-2012) for each objective in Questions 5 and 6. Project Data Tables (made available for the previous conference call) were provided to the Committee members, and are available online. These Tables included some live links for 2008-2010 projects the 2008 through 2010. The Conclusions Tables were compilations of initial determinations about the funding progress on Questions 5 and 6 objectives made by Planning Group members during the previous conference call. These tables provided brief summaries of the discussion of each objective.

Dr. Daniels guided the Group through discussions of research progress, gaps, and barriers for each of the objectives. She began each discussion by reviewing the overall conclusions from the previous Planning Group call regarding funding, projects, and conclusions.

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. The Group previously decided that the recommended budget had been partially met, but more work was needed. They felt that the full scope of the objective had not been met, and that the objective might be too broad. Dr. Aubyn Stahmer said that services gaps had been identified, but it was unclear why these gaps existed. Dr. Brian Boyd added that research was needed to understand disparities in outcomes for minorities and low-income families. Dr. Zachary Warren agreed, saying that until the reasons for these disparities were understood, they could not develop effective strategies for closing the gaps. Dr. David Mandell said that research was needed to improve access to care and outcomes for traditionally underserved families. He also asked whether, in order to improve outcomes, it was enough to improve the quantity and quality of interventions in underserved geographic areas, or would it be necessary to develop and implement interventions specifically targeted to particular underserved groups in these geographic areas.

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. The Group previously said that the recommended budget had been partially met, but more work was needed. Dr. Stahmer said that self-directed care for very young children might help parents to become empowered to direct their children's care. Dr. Nancy Cheak-Zamora agreed, adding that this could also apply to older children and adults with ASD. Dr. Boyd and Dr. Warren noted that while there has been some research on employment during the transition for young adults, more work was needed in this area. Dr. Cheak-Zamora said that research for this age group had been piecemeal. There was no clear definition of outcomes. Dr. David Mandell said that one of the bigger issues was scale. Self-directed programs for adults often involved only small groups. He also elaborated on the idea of practice to research as a means to take advantage of less traditional ways to provide support to families that were already being used in the community, and were specific to the family's needs. Dr. Stahmer said that when community agencies were involved from the beginning as part of a partnership – and benefited in terms of grants and research – they were relatively open to participation in the long term. Dr. Mandell mentioned existing partnership collaborative funding mechanisms.

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 Group previously agreed that the recommended budget had been partially met, but the objective was not fully achieved, and was underfunded. Dr. Stahmer said that – at least in California – state and national policies were very slowly disseminated to the local level. Policies were interpreted in different ways depending on the locality; state studies weren't necessarily meaningful. Dr. Boyd added that there were methodological issues to consider as well. Dr. Cheak-Zamora pointed out that part of this objective was about self-determination and economic self-sufficiency, which had not been addressed in the funded projects. Dr. Burton-Hoyle added that lack of verbal communication shouldn't be barrier for self-determination, and that idea of self-determination might be different for these individuals. For example, the ability to balance a checkbook need not be a barrier to self-determination. Mr. Scott Robertson suggested that training was needed for parents to understand the roles of self-determination across the lifespan. Others added that this should include caregivers. Dr. Daniels mentioned that on the earlier planning group call, the group had discussed this objective as being underfunded and noted that the funding reflected did not include HRSA's state demonstration projects. Dr. Stahmer asked why the decision was made not to include the state demonstration projects, and Dr. Daniels explained that HRSA's view was that the overall goal of the projects was not research, so they didn't feel the projects should be included, though the activities conducted under the state demonstration projects did seem to be related to the objective. Ms. Abdull said that it would be very helpful to parents to be able to coordinate diagnoses, services, and all types of interventions – a team approach – that would transition with a child into adulthood. Dr. Cheak-Zamora noted that this type of work has been done for children with other disabilities, and perhaps they could take advantage of some of this knowledge. Mr. Robertson asked if it would be possible to fund self-direction programs and initiatives through existing grants instead of creating new grants.

5.S.D Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. On the last call, the Group agreed that the recommended budget had been partially met, but more work was needed. Ms. Singer said that new questions had emerged about best practices in terms of preventing wandering, and evaluating some interventions currently used to prevent wandering and for recovery after wandering. Ms. Abdull said that interventions for wandering – and insurance coverage or waivers – were needed immediately, in order to save lives. Dr. Burton-Hoyle added that there was also an urgent need to take action on seclusion and restraint in schools, which was a cause of harm and/or mortality. Mr. Robertson proposed incentives to increase research about adult health, which was greatly lacking. He cited a study, which showed greater odds of unmet healthcare needs related to physical and mental health, and lower satisfaction in communication with healthcare providers among adults with autism.¹ Dr. Boyd Brian said that discussions about sexual/reproductive health should also be included in this area of research.

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 Group previously agreed that the recommended budget had been met, but felt that this was a very broad objective that had some potential overlap with objective 5.S.A. They said that more work was needed to cover the range of topics, particularly projects looking at diverse community settings. Dr. Stahmer said that while there had been a number of studies in this area, most were not moving the results of dissemination/implementation science from other areas into the autism research setting quickly. Most projects in community settings did not use models that would lead to sustainability. Dr. Mandell agreed that the research on dissemination and implementation that had already been done in other areas was not being adapted for use in autism. He suggested that training provided through institutes on research and implementation science or through other types of training and networks could be helpful.

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 Group previously agreed that the recommended budget had been partially met, but the ongoing projects had not addressed efficacy. They felt that the intention of the objective had not been achieved. Dr. Mandell observed that cost effectiveness studies worked best when partnered with ongoing randomized controlled trials (RCTs) or other experimental studies. Cost-effectiveness components could be included in the original trial design. Existing studies didn't always have the necessary information for cost-effectiveness analysis. In addition, autism-specific measures were inadequate; the development of better measures was critical. Another problem was the need to follow individuals for long periods of time. These elements were generally missing from existing research. Dr. Warren said that tightly controlled RCTs were probably not ideal. An open approach involving the community would work better because community providers were the ones doing the interventions.

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. On the last call, the Group said that the recommended budget had been met. However, efforts under this objective required continued support. Also significant workforce needs remained, especially with regard to paraprofessionals. Dr. Mandell said that approaches were needed to train clinicians, teachers, other professionals, and parents on a large scale. He suggested large-scale studies of comparative effectiveness for different training models, and examining the effects both on service delivery, and also on outcomes. Dr. Stahmer added that there should be definitions of the training needed for different groups.

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 Group previously agreed that this was a broad objective with a small recommended budget. Neither the recommended budget nor the intent of the objective had been met, and more work was needed. There was a discussion of whether this objective could be included as part of other objectives. The Group agreed with Dr. Rice that this objective be combined with objective 5.S.D., so that the call for studies to understand health, safety, and mortality issues would then be linked to research on strategies to address those issues.

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 Group agreed previously that the recommended budget had been met. However, the projects were primarily focused on children and did not address the needs of adolescents and adults on the spectrum. Also, the projects focused on behavior management, not comprehensive dental care. Dr. Mandell suggested that it was odd to focus so narrowly on dental issues when there are many different primary healthcare needs not being met in the autism community.  He suggested that in the future when the group might consider updating the objectives themselves, that it might be helpful to broaden the objective to address primary and preventive care, with dental care as just one component, and the Group agreed.

Discussion of Question 6 IACC Portfolio Analysis Documents and Strategic Plan Progress

Next the Planning Group discussed progress, gaps, and barriers related to Question 6 objectives

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 Group previously felt that the recommended budget had been partially met, and that progress would continue in the right direction. Dr. Cheak-Zamora said that this objective contained six examples of ways to research service delivery for adults. It was too much to address in one objective. Dr. Daniels noted that this was a characteristic of several objectives in Question 6. Dr. Cheak-Zamora said that more projects on housing, education, and health services were definitely needed. There was no consensus on best practices in those areas. She added that it was unclear what had been learned from the studies that had been conducted. Dr. Warren said that there it was essential to define quality of life across the heterogeneity of the disorder in order to advance the research.

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 Group agreed previously that the recommended budget for this objective had been partially met. However, more work was needed with regard to social security The Group also felt that the objective could be accomplished with less than the recommended budget. Dr. Cheak-Zamora said that in her experience there was often a great lack of coordination between services. It was difficult for young adults and parents to coordinate services on their own. Dr. Mandell suggested that rather than evaluating one model, it would more efficient to compare multiple models at the same time, given the number of different models in use by the states. This would encompass cost-benefit information as well.

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. On the last call, the Group said that the recommended budget had been partially met. Only one small project had been funded; this was still a significant need. Dr. Mandell noted that he and his co-investigators had received an NIH planning grant to assess the prevalence of ASD in adults who were misdiagnosed with another psychiatric disorder However, they had realized that in order for the study to have impact in the community, it would need to link the research findings to changes in treatment and service delivery. He suggested that methods of identification of adults with autism be linked to different models of care. Mr. Robertson raised the issue of adaptability among misdiagnosed or undiagnosed adults. Some adults might not be included in prevalence data because they were missed by screening tools due to adaptations they had learned, imitating neurotypical behaviors, for example.

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 Group previously felt that the recommended budget had only been partially met. However, there was not enough funding or projects for this objective. Nor did the existing projects address the full range of issues. Dr. Mandell noted that the care system was not prepared to meet the needs of the increasing number of adults with autism. They needed to start developing, and then evaluating, large-scale strategies for providing training and support to professionals, so that they would be better equipped to help the increasing number of adults with autism. Dr. Cheak-Zamora added that the next step should be trials of methods to educate professionals.

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. On the last call the Group agreed that the recommended budget had been partially met. Progress had been made, but sustainability was important in order to fully achieve the goals of the objective. They also noted a concerning trend of decreasing funding over time. Dr. Cheak-Zamora noted that the projects for this objective have focused on teens and adolescents, not adults. Dr. Mandell suggested that this objective overlapped with objective 6.S.A. and others primarily looking at quality of life/health outcomes. He suggested re-organizing and re-phrasing these objectives, so that each of the areas listed mentioned in objective 6.S.A (safety, integrated employment, post-secondary educational opportunities, community inclusion, self-determination, relationships, and access to health services and community-based services) has its own stand-alone objective, and that each objective has more specific outcome measures, rather than having a single objective call for improvement in quality of life across many areas without any clear outcome measures. 

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 Group previously agreed that the recommended budget had been partially met, but the projects had not addressed the questions in this area satisfactorily. More research was needed, particularly regarding long-term outcomes. Dr. Boyd asked about possible funding mechanisms to allow long-term follow up of cohorts of children from RCTs. Dr. Warren said that it would be more fruitful to invest in following several cohorts over time. He added that adult natural history studies were needed. It was extremely important to understand the effects of early intervention over time. Dr. Daniels noted that cost often was a barrier for long-term longitudinal studies. Dr. Mandell said that they could build on work that was already funded. They should also consider how to take advantage of control groups in ongoing studies.

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 Group previously felt that the recommended budget had been only partially met, and much more funding was needed in this area. Also, they felt that most of the funded projects focused on adolescents. More work was needed on the services and support needs of older adults. Dr. Mandell said that this objective overlapped considerably with several others. He recommended splitting these objectives so that they were organized either by the outcome of interest or by the specific population of interest (to highlight the needs of middle-age and older adults). Dr. Warren questioned whether there were even enough empirically-sound interventions for adults. Dr. Boyd added that more basic was needed to identify and characterize middle-age and older adults. Much of the work had focused on transition-aged individuals. Mr. Robertson said that there needed to be a shift in thinking; the entire lifespan should be considered. He noted that the United Kingdom had mandated needs assessments several years ago.

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 Group previously agreed that the recommended budget was only partially met. Also, there was an inadequate number of projects and inadequate funding for this objective. Dr. Cheak-Zamora said that the funded programs/studies don't follow individuals past early adulthood. Dr. Rice said that this is a huge gap. Dr. Daniels summarized that there were layers of gaps - the prevalence of ASD among adults is unknown, it is unclear how to track adults with ASD, and data on adult needs is lacking.

Aspirational Goal Question 5: "Communities will access and implement necessary high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD." Dr. Mandell said that their discussion had highlighted the need for the objectives to align more clearly with the aspirational goals. The objectives, as written, were too broad and too general. They needed to define important terms more clearly: quality of life, health outcomes self-determination, participation in school, work, community, relationships, and access to services and supports. Then they should align objectives with the aspirational goals, which would allow them to better pinpoint progress in terms of the science.

Aspirational Goal Question 6: "All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships, and access to necessary and individualized services and supports." Dr. Cheak-Zamora commented that the objectives were somewhat mismatched with the aspirational goal.

Adjournment

The conference call was adjourned at 12:35 p.m.

Certification

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

/Susan Daniels/ November 22, 2013
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

References

¹ Nicolaidis C, Raymaker D, McDonald K, et al. Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. 2013 Jun;28(6):761-9. [PMID: 23179969]

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• 2012 IACC Strategic Plan Update
• 2011 IACC Strategic Plan

Question 5 (Services)

• Compiled Objective Chart for Question 5 2008 to 2012 (PDF – 154 KB)
• Conclusions by Objective for Question 5 (PDF – 137 KB)

Portfolio Analysis

• 2012 Portfolio Analysis Question 5 Project Listing (PDF – 411 KB)
• 2011 Portfolio Analysis Question 5 Project Listing (PDF – 407 KB)

Conclusions by Objective for Question 5 (Services)

Prepared for IACC Strategic Plan Update Question 5 Planning Group Conference Call November 13, 2013

IACC Strategic Plan Objectives	Planning Group Summary	Funding 2008-2013
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $1,000,000 over 3 years	Planning Group Summary The recommended budget was met.  The initial target of two studies has been met, but more work needs to be done in this area. The projects under this objective cover several topics related to family functioning and health disparities, but the full breadth of the gaps mentioned in the objective. This objective, as written, may be too broad.	Funding 2008-2013 $5,277,713
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $6,000,000 over 3 years	Planning Group Summary The recommended budget was partially met. More work is needed in this area to achieve the goals set forth by the objective. While more than the number of studies called for have been supported, the area is underfunded (the projects have been small) and the projects do not examine all areas targeted in the objective. For example, several of the funded projects relate to recreational activities, but more projects that focus on issues such as housing, employment, and quality of life (self-direction) are needed. Issues such as housing and employment may not be reflected in the portfolio data because the agencies and organizations included may not have these topics as a primary focus, and many housing and employment-related efforts may not be specific to autisms.	Funding 2008-2013 $737,975
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $25,000,000 over 5 years (revised in 2011)	Planning Group Summary The recommended budget has been partially met. Good work has been done but the objective is not fully achieved as it is underfunded and the projects do not cover all of the issues mentioned in the objective. HRSA funds state demonstration projects which may be related to this objective; however, HRSA did not include these projects in the 2011 and 2012 Portfolio Analysis data sets submitted following a discussion with the committee in 2012.	Funding 2008-2013 $5,425,315
IACC Strategic Plan Objectives 5.S.D Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years	Planning Group Summary The recommended budget was partially met. More work is needed on this objective; studies have been funded in this area (e.g. wandering, victimization), but they are small and they do not address all issues within this objective. There may be some projects in other Strategic Plan Questions that are related to this objective (i.e., Utah epidemiological study that examines causes of mortality).	Funding 2008-2013 $164,135
IACC Strategic Plan Objectives 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. IACC Recommen Planning Group Summary ded Budget: $7,000,000 over 5 years	Planning Group Summary The recommended budget has been met. This is a very broad objective but a lot of research is being supported in this area, though, more work is needed to cover the range of topics addressed in the objective. Specifically, the requirement of projects looking at diverse community settings has not been met.	Funding 2008-2013 $26,386,050
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $16,700,000 over 5 years	Planning Group Summary The recommended budget was partially met. There are ongoing projects under this objective with regard to efficacy but not cost-effectiveness. More work is needed and in general, the intention of this objective has not been achieved.	Funding 2008-2013 $603,717
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $8,000,000 over 5 years	Planning Group Summary The recommended budget has been met, and there have been several projects in this area.  However, there is a need to continue to support efforts in this area. Significant workforce needs remain, especially with regard to paraprofessionals.	Funding 2008-2013 $46,338,747
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $2,000,000 over 2 years	Planning Group Summary This is a broad objective with a small budget to start with and both the recommended budget and the intent of the objective have not been met (or have only been partially met). More work is needed in this area.	Funding 2008-2013 $631,838
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $900,000 over 3 years for each	Planning Group Summary The recommended budget has been met.  While funding is on track there is a gap in projects that focus on dental services for adults and training for dentists working with autistic adults. While the funded studies focus on behavior management, a more comprehensive health focus is needed to address the dental needs of children and adults with ASD.	Funding 2008-2013 $948,101
IACC Strategic Plan Objectives Not specific to any objective	Planning Group Summary	Funding 2008-2013 $36,306,742
IACC Strategic Plan Objectives Total funding for Question 5	Planning Group Summary	Funding 2008-2013 $122,820,333

This document is for discussion purposes only and does not reflect the decisions of the IACC

Question 6 (Lifespan)

• Compiled Objective Chart for Question 6 2008 to 2012 (PDF – 145 KB)
• Conclusions by Objective for Question 6 (PDF – 132 KB)

Portfolio Analysis

• 2012 Portfolio Analysis Question 6 Project Listing (PDF – 269 KB)
• 2011 Portfolio Analysis Question 6 Project Listing (PDF – 268 KB)



Conclusions by Objective for Question 6 (Lifespan)

Prepared for IACC Strategic Plan Update Question 6 Planning Group Conference Call November 13, 2013

IACC Strategic Plan Objectives	Planning Group Summary	Funding 2008-2013
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $5,000,000 over 3 years	Planning Group Summary The recommended budget was partially met. This area is moving in the right direction as funding and projects have increased over time.	Funding 2008-2013 $1,859,186
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $5,000,000 over 3 years	Planning Group Summary The recommended budget was partially met, and more than one project was funded, meeting the initial target of this objective. However, , little to no work has be done relating to Social Security and this is still needed. It is possible that this objective can be achieved with less than the recommended budget.	Funding 2008-2013 $2,100,000
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $8,400,000 over 5 years	Planning Group Summary The recommended budget has been only partially met, and one small project has been supported in this area, but one project would not be enough to meet the goal of developing a new diagnostic instrument (multiple projects testing various approaches, followed by intense efforts to refine the instruments, would likely be needed). This is still a significant need.	Funding 2008-2013 $56,000
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $7,500,000 over 5 years	Planning Group Summary The recommended budget has been only partially met. There is not enough funding or projects for this objective. Also, the few projects do not address the range of issues in this objective. For example, the projects under this objective focus on secondary students and transition age youth; projects on older adults are missed. It is important to note that there were no new projects funded in 2011 and 2012.	Funding 2008-2013 $619,163
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $12,900,000 over 5 years	Planning Group Summary The recommended budget was partially met and 11-18 projects were supported between 2010 and 2012. Good work is being done; however, a sustained effort is needed to fully achieve the goals set forth by this objective. It also appears that funding is decreasing over time which is a concern.	Funding 2008-2013 $8,036,325
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $5,000,000 over 5 years	Planning Group Summary The recommended budget for this objective has been partially met and more than one project was funded. However, the projects have not answered all of the questions in this area. More research is needed regarding long-term outcomes.	Funding 2008-2013 $3,986,983
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $6,000,000 over 5 years	Planning Group Summary The recommended budget was only partially met. Not nearly enough funding and projects have been devoted to this objective. Funded projects focus on adolescents. Much more work needs to be done, specifically, on service and support needs of older adults.	Funding 2008-2013 $774,644
IACC Strategic Plan Objectives 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. IACC Recommended Budget: $4,000,000 over 5 years	Planning Group Summary The recommended budget was only partially met. There is an inadequate amount of projects and funding for this objective. The funded studies are economic analyses, but not implementation of comparative effectiveness studies in real-world settings.	Funding 2008-2013 $135,000
IACC Strategic Plan Objectives Not specific to any objective	Planning Group Summary	Funding 2008-2013 $2,179,302
IACC Strategic Plan Objectives Total funding for Question 6	Planning Group Summary	Funding 2008-2013 $19,746,603

This document is for discussion purposes only and does not reflect the decisions of the IACC

Highlighting of each total gives an indication of the progress toward meeting the IACC recommended budget for each objective. Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while red highlighting indicates that there has been no funding towards the particular objective.
blue text is an insertion
red text is a deletion

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