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IACC Strategic Plan Update Questions 5 and 6 (Services and Lifespan) Planning Group Meeting Materials - November 13, 2013

Below you will find links to the materials for the meeting.

Question 5 (Services)

Portfolio Analysis

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
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
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. $5,277,713
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
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. $737,975
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)
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. $5,425,315
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
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). $164,135
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 Recommended Budget: $7,000,000 over 5 years
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. $26,386,050
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
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. $603,717
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
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. $46,338,747
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
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. $631,838
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
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. $948,101
Not specific to any objective   $36,306,742
Total funding for Question 5   $122,820,333

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

Question 6 (Lifespan)

Portfolio Analysis

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
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
The recommended budget was partially met. This area is moving in the right direction as funding and projects have increased over time. $1,859,186
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
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. $2,100,000
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
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. $56,000
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
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. $619,163
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
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. $8,036,325
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
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. $3,986,983
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
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. $774,644
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
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. $135,000
Not specific to any objective   $2,179,302
Total funding for Question 6   $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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