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Strategic Plan Cover 2019

IACC Strategic Plan

For Autism Spectrum Disorder

2018-2019 Update

Chapter 1: Highlights from IACC Full Committee Meetings in 2018-2019

Two IACC Members talking during an IACC meeting


This chapter describes presentations and discussions that took place at IACC Full Committee meetings in 2018 and 2019. The IACC regularly invites presenters to speak about topics of interest to the committee and to the broader autism community. The goal of these presentations is to inform the IACC and the autism community about recent scientific advances, new research funding announcements and service programs, policy updates, and other important issues. Invited speakers include researchers, advocates, federal agency officials, and others. These presentations and their associated discussions highlighted areas of concern or progress relevant to the seven research priority areas of the IACC Strategic Plan, and helped to inform the future strategic planning activities of the committee. Archived videos of each presentation and the full slide sets are available on the IACC website. The topics highlighted in 2018-2019 include research on health disparities, early detection, employment, aggression and self-injury, wandering, disability financial planning, housing, health-care, prevalence, communications technologies, and systems of care.

Highlights from the Meetings

January 2018

Advancing Behavioral Health in the Indian Health System

Marcella Ronyak, Ph.D.
Deputy Director, Division of Behavioral Health, Indian Health Service (IHS)

The goal of this presentation was to inform the IACC about the IHS and its provision of mental health services to American Indians and Alaska Natives, including those with autism. The IHS takes a holistic and culturally appropriate approach to addressing ASD and other health issues in the communities that it serves. Several types of service facilities are managed by IHS and/or supported by IHS funding, including hospitals, health centers, village clinics, health stations, and school health centers. Dr. Ronyak discussed the Indian Children’s Program (ICP) which provides education, training, and consultation for American Indian and Alaska Native youth, including services for autism. This program reaches individuals and families who are not able to travel to access autism diagnostic assess-ment and services. It also administers a series of webinars on autism for service providers. Dr. Ronyak also discussed the Telebehavioral Health Center of Excellence (TBHCE) program, which provides ASD-relevant tele-education and tele-heath technical assistance to patients and providers in IHS service areas. The activities discussed in this presentation address the committee’s interest in issues related to reducing health disparities in the autism community and Questions 1, 4, and 5 of the IACC Strategic Plan.

Introduction to the ASD PEDS Network

Denise Pintello, Ph.D., M.S.W.
Chief, Child and Adolescent Research Program, NIMH Acting Chief, Dissemination and Implementation Research Program, NIMH

Amy Wetherby, Ph.D., C.C.C.-S.L.P.
Distinguished Research Professor, Department of Clinical Sciences, Florida State University
Director, Autism Institute, Florida State University

Alice Carter, Ph.D.
Professor, College of Liberal Arts, University of Massachusetts, Boston

Emily Feinberg, Sc.D. C.P.N.P.
Associate Professor, Department of Community Health Sciences, Boston University School of Public Health
Associate Professor of Pediatrics, Division of General Pediatrics, Boston University School of Medicine

This panel of presentations introduced the ASD Pediatric Early Detection Engagement and Services (PEDS) Network, a group of five NIMH-funded studies exploring early detection and intervention for autism in very young children (ages 0-3 years). Dr. Pintello first discussed the development of this research network and its efforts to increase the evidence base in support of the screening of all children for ASD. She then highlighted the efforts of the investigators to coordinate their methods and measurements in order to improve the statistical power of their studies. Three of the Network’s principal investigators next presented their ongoing research as part of the ASD PEDS Network. Dr. Wetherby described her work to streamline screening and build the capacity of communities to screen and provide early services for ASD. Dr. Carter discussed a new multi-stage screening protocol implemented in partnership with Medicaid Part C Early Intervention agencies. Finally, Dr. Feinberg discussed her project, which is focused on the continuum from screening to diagnostic assessment to intervention services and how this can be tailored to meet the needs of low-income families and racial/ethnic minorities. At the conclusion of the funding period, the researchers involved in the Network hope to identify new and improved strategies for screening and diagnosis of young children in diverse communities and care settings. These efforts will help to increase access to early ASD diagnosis and services that are known to have a critical impact on cognitive and behavioral outcomes. The activities discussed in this panel follow up on a prior IACC presentation about recommendations of the U.S. Preventive Services Task Force (USPSTF) related to early screening of children for ASD, which suggested the need for additional research data to demonstrate the benefits of screening for ASD in young children for whom no concerns of ASD have been raised. These presentations on current research on ASD screening address Questions 1 and 5 of the IACC Strategic Plan.

April 2018

Panel on Employment for People on the Autism Spectrum

Scott Michael Robertson, Ph.D.
Policy Advisor, Youth Policy Team, Office of Disability Employment Policy, U.S. Department of Labor

Jose Velasco, M.S.
Vice-President of Operations and Strategy, Global Co-Lead, Autism at Work, SAP

Marjorie Madfis, M.B.A.
Yes She Can, Inc.

Lori Ireland, M.B.A.
Co-Founder and Board Member, Extraordinary Ventures

Paige Morrow
Managing Director, Extraordinary Ventures

The participants in this panel discussed several successful employment programs and models for companies that employ autistic individuals. Dr. Robertson first discussed the need for companies to recognize both the challenges and benefits of hiring people with ASD. He also presented an overview of the U.S. Department of Labor’s efforts and initiatives to improve employment outcomes for individuals with disabilities, including ASD. Mr. Velasco then discussed the Autism at Work initiative at SAP, an international software company that has committed to including individuals with disabilities in a range of positions across their entire global business. The program provides onboarding, training, and mentoring opportunities for individuals with ASD. Next, Ms. Madfis described her company Yes She Can Inc., which teaches transferrable job skills to young adults with ASD while they are employed at a resale boutique for American Girl™ dolls and accessories. This program provides a first job experience and equips individuals with job skills for future employment in other venues. Finally, Ms. Ireland and Ms. Morrow described Extraordinary Ventures, which is a non-profit organization that operates under the philosophy that all people are employable. Extraordinary Ventures creates self-supporting small business ventures that provide employment opportunities for individuals with autism and other developmental disabilities. The panelists discussed various approaches to providing job training and employment support for people on the autism spectrum, giving them the opportunity to be valued and successful employees. The activities discussed in this panel informed the committee on current employment models and address Question 6 of the IACC Strategic Plan.

Aggression and Self-Injury: Research Needs for the Severely Affected End of the Spectrum

Matthew Siegel, M.D.
Director, Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), Maine Medical Research Institute; Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare

Dr. Siegel is the director of a specialized inpatient hospital for disabled individuals with severe behaviors that interfere with their daily functioning and ability to be in less restrictive settings. He described his research which seeks to understand the underlying mechanisms of aggression. He also described the framework of a treatment plan that is highly individualized and incorporates a multidisciplinary approach, including applied behavioral analysis. Other effective therapeutic approaches may include psychotropic medication, communication strategies, medical treatment, family work and parent training, sensory regulation strategies, social skills, social cognitive strategies, and psychotherapy strategies. Dr. Siegel next discussed the Autism & Developmental Disorders Inpatient Research Collaborative (ADDIRC), an NIH-funded research network of specialty inpatient units designed to strengthen the evidence base of intensive behavioral health treatments and interventions for individuals severely affected by ASD and other developmental disorders. Early findings from the network have identified risk factors associated with psychiatric hospitalization. Lastly, he discussed his ongoing research studying physiological arousal as a potential biomarker before, during, and after aggressive behaviors. These findings may be useful to families, caregivers, and providers in the future for predicting and planning for response to incidents of aggressive behaviors. The topics discussed in this presentation informed the committee of research findings related to individuals on the autism spectrum with high medical and support needs and address Questions 2 and 4 of the IACC Strategic Plan. The work described in this presentation contributes to the IACC’s focused effort on co-occurring mental and physical health issues that affect individuals on the autism spectrum, culminating in two workshops that took place in 2019 (described in Chapter 2 of this report).

October 2018

Autism Society Presentation: Unintentional Injury in Children and Youth with ASD

Jack Scott, Ph.D., B.C.B.A.-D.
Member, Autism Society Panel of Professional Advisors; Executive Director, Florida Atlantic University Center for Autism and Related Disabilities

Dr. Scott is a member of the Autism Society of America, a non-profit organization that provides advocacy, education, information and referral, support, and community at national, state and local levels. In his presentation, he reviewed data demonstrating the high risk of unintentional injury, wandering, and death in individuals with autism, especially young children who typically lack self-preser-vation skills and do not understand rules of conduct. He discussed various technologies available to families and communities that can help minimize the risk associated with wandering. He also discussed existing law enforcement training programs from the Autism Society of America and other organizations. Dr. Scott advocated for the potential benefits of a national agenda to train first responders, police officers, and federal officers in safety for children with autism, and the need for state education agencies to address elopement in students with ASD and other vulnerabilities. Finally, he suggested ways that federal agencies could expand their existing programs to provide better data on mortality in children with ASD, as well as develop new interventions and safety initiatives in order to better meet the need of individuals and families living with ASD. The activities discussed in this presentation address the committee’s ongoing interest in the issue of wandering and efforts to reduce premature mortality in individuals on the autism spectrum. They also address Question 6 of the IACC Strategic Plan.

Panel: The ABLE Act and Financial Planning for People with Disabilities

Stuart Spielman, Esq.
Senior Vice President, Advocacy, Autism Speaks

Bette Ann Mobley
Director, Maryland ABLE

Colin Meeks, C.F.P., Ch.F.C., C.L.U.
Certified Financial Planner, Maryland Financial Advocates; Host, Special Needs Connection Podcast

Phoebe Ball, Esq.
Legislative Affairs Specialist, National Council on Disability

The participants in this panel discussed financial planning for autistic individuals and their families. The Achieving a Better Life Experience (ABLE) Act of 2014 was enacted in order to assist individuals with disabilities and their families as they plan for future care expenses over the lifespan of the individual. Individuals and families can contribute to ABLE accounts, which are tax-advantaged savings accounts that can fund disability expenses. Mr. Spielman first discussed the financial insecurity that many people face while planning for the futures of themselves or their family members with disabilities including ASD. He then reviewed the history of the ABLE Act and highlighted the Congressional support that it continues to receive. In order to better meet the needs of individuals and their families, ABLE accounts do not affect account holders’ eligibility for programs such as Supplemental Security Income (SSI) and Medicaid. Ms. Mobley then discussed the logistics of state ABLE programs and some of the benefits of having an account. Mr. Meeks reviewed the importance of financial and legal planning for all special needs families and the need to understand all available options, including ABLE accounts and special needs trusts. He also discussed the differences between these two planning options. Finally, Ms. Ball discussed the role of the National Council on Disability (NCD), a nonpartisan, independent federal agency, in assisting people with disabilities with financial planning. She also shared NCD’s hopes for the future of the ABLE program, including the need for more accountholders and for more states to provide ABLE programs. The activities discussed by this panel address Question 6 of the IACC Strategic Plan.

January 2019

HCBS Final Rule: Current Issues and Future Directions

Melissa Harris
Acting Deputy Director, Disabled and Elderly Health Programs Group, Center for Medicare and CHIP Services, Centers for Medicare and Medicaid Services (CMS)

Ms. Harris discussed the 2014 Home and Community-Based Settings (HCBS) Final Rule, a CMS regulation which defines criteria for home and community-based settings supported by Medicaid. This rule was instituted to ensure that individuals (including those with autism) receiving services have freedom of choice for a qualified living setting and qualified service provider, as well as to standardize HCBS criteria across states. Ms. Harris first explained how the rule was developed, including how CMS considered stakeholder input on the subject. She then reviewed the contents of the rule, which emphasize integration in and access to the greater community, as well as opportunities to seek employment and work in competitive integrated settings. Ms. Harris discussed how these criteria can be modified to accommodate different populations with varying needs, and how settings with institution-like qualities may require special attention and guidance in order to meet the regulations. Finally, she provided an update on implementation of the Rule across states and noted that CMS is developing revised guidance on the Final Rule based on stakeholder feedback. The presentation clarified some misconceptions about the Final Rule and outlined the way in which the Final Rule may help individ-uals with ASD and their families as they explore housing options. This presentation addresses the committee’s interest in issues related to housing for autistic adults and Questions 5 and 6 of the IACC Strategic Plan. The committee followed up on this issue by holding a workshop on housing for individuals with disabilities in June 2019 (described in Chapter 3 of this report).

TRICARE Autism Care Demonstration

Capt. Edward Simmer, M.D.
Chief Clinical Officer, TRICARE Health Plan, Defense Health Agency, Department of Defense

Krystyna Bienia, Psy.D.
Clinical Psychologist, Senior Policy Analyst, Defense Health Agency, Department of Defense

Capt. Simmer presented an overview of the Military Health System (MHS) and TRICARE Health Plan (TRICARE), which provides health care services for US service members, military retirees, and their families. Capt. Simmer noted that standards of care can differ between military hospitals and civilian programs, so MHS is currently working to standardize rules and benefits across these entities. Primary care services covered by MHS for individuals with ASD can include applied behavioral analysis (ABA), occupa-tional therapy, physical therapy, and speech and language therapy. Dr. Simmer discussed recent expansions of benefits for mental health services as well as the Extended Care Health Option (ECHO) for active duty families who may have difficulty retaining Medicaid coverage following moves across states. Finally, Capt. Simmer noted that benefits are typically provided based on the existence of evidence-based research showing their effectiveness, but the evidence base for many ASD interventions is not yet established. Dr. Bienia next reviewed the Autism Care Demonstration (ACD), which allows for the provision of ABA services to TRICARE-eligible beneficiaries diagnosed with ASD, despite the fact that ABA services often do not meet the typical criteria for reliable evidence. The goal of the ACD is to better target and treat the needs of each individual with ASD. Dr. Bienia reviewed the history of providing ABA benefits under TRICARE, then discussed the efforts of MHS to measure program outcomes in order to enhance the evidence base for ABA. Finally, she discussed initiatives to improve the program by soliciting input from stakeholders, including parents, service providers, and advocates. The activities discussed in this presentation address Questions 4 and 5 of the IACC Strategic Plan.

Panel Presentation: Kevin and Avonte’s Law, and Disability Programs

Alison Singer, M.B.A.
IACC Member, President, Autism Science Foundation

Lori McIlwain
Co-Founder, Board Member, National Autism Association

Maria Fryer
Policy Advisor for Substance Abuse and Mental Health, Bureau of Justice Assistance, Office of Justice Programs, Department of Justice

Leemie Kahng-Sofer
Program Manager, Missing Children Division, National Center for Missing and Exploited Children

The participants in this panel discussed the issue of elopement/wandering in the context of Kevin and Avonte’s Law, new federal legislation that authorizes grants to law enforcement agencies for first responder training and tracking technologies to help ensure the safety of individuals with ASD and other developmental disabilities who may wander from caregivers. Ms. Singer provided an overview of the issue of elopement in individuals with ASD, particularly the increase in the average age of autistic individuals who die as a result of wandering. She also described steps that the federal government, the advocacy community, and the IACC have taken to increase awareness and reduce wandering incidents in autistic individuals. Ms. McIlwain reviewed the current statistics on wandering among people with ASD, including several case studies. She also described some of the resources available to families that were developed by the National Autism Association and other advocacy groups. She noted that Kevin and Avonte’s Law is a good first step, but appropria-tions are needed to fully implement the law. Ms. Fryer then discussed recent ASD-relevant initiatives from the Bureau of Justice Assistance, a federal agency that aims to help vulnerable populations in the justice system. She noted that the Department of Justice is developing new initiatives and engaging with law enforcement agencies, communities, and disability response teams to address the issue of wandering. Next, Ms. Kahng-Sofer reviewed the efforts and ASD-related data from the National Center for Missing and Exploited Children (NCMEC), a non-profit organization that helps find missing children, reduce child sexual exploitation, and prevent child victimization. She described how NCMEC partners with the Department of Justice, local law enforcement and first responder agencies, and other community organizations. She also described several initiatives that have been in implemented in communities to increase safety for children with ASD. The activities discussed in this panel follow up on the committee’s interest in the issue of wandering and prevention of premature mortality, and they address Question 6 of the IACC Strategic Plan.

April 2019

CDC Autism Data Visualization Platform

Stuart Shapira, M.D., Ph.D.
Chief Medical Officer, Associate Director for Science (ADS), National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention

Dr. Shapira introduced the Centers for Disease Control and Prevention (CDC)’s Autism Data Visualization Tool, an interactive website that provides up-to-date and historical ASD prevalence data and demographic characteristics among children in the United States. The tool draws data from four different sources: the CDC's Autism and Developmental Disabilities Monitoring Network, the Department of Education's Special Education Child Count, Medicaid data, and the Health Resources and Services Administration's National Survey of Children’s Health. The website is designed to be user-friendly and easy to navigate for all users who seek to learn more about ASD prevalence at the national, state, and community levels. By including data from these four federal resources, the tool aims to improve understanding of ASD, its impact, and trends and changes in ASD prevalence over time. It can also be used to inform service delivery and guide future policymaking. The information provided by this resource addresses Question 7 of the IACC Strategic Plan.

Update from the Federal Communications Commission

Theodore Marcus, J.D.
Deputy Chief, Disability Rights Office, Consumer and Governmental Affairs Bureau, Federal Communications Commission (FCC)

The FCC is an independent U.S. government agency that regulates interstate and international communications by radio, television, wire, satellite and cable. Mr. Marcus described the efforts of the FCC to empower persons with ASD and other disabilities to have full access to and easy use of technologies. The FCC is currently seeking to better understand where and how much broadband internet is provided in communities, and which underserved populations face barriers to accessing it. He reviewed several technologies that the FCC oversees that are potentially beneficial to autistic individuals, including text and instant messaging, video conferencing, relay services, closed captioning, and audio description. Finally, Mr. Marcus encouraged individuals to contribute to policy change by informing the government of critical issues to consider, engaging with product manufacturers and providers on ways to increase accessibility, or by contacting the FCC to receive direct assistance. The activities discussed in this presentation reflect current challenges in ensuring that individuals have access to technology that enables them to participate fully in their community and society and address Questions 5 and 6 of the IACC Strategic Plan.

Panel Presentation: Disability Employment

Julie Taylor, Ph.D.
Assistant Professor of Pediatrics, Vanderbilt University Medical Center Investigator, Vanderbilt Kennedy Center, Vanderbilt University Medical Center

Paul Wehman, Ph.D.
Professor of Physical Medicine and Rehabilitation, Chairman Division of Rehabilitation Research, Director of VCU-RRTC, Medical College of Virginia, Virginia Commonwealth University

Erik Carter, Ph.D.
Cornelius Vanderbilt Professor, Department of Special Education, Vanderbilt University

Hala Annabi, Ph.D.
Associate Professor, Information School, University of Washington

The participants on this panel discussed challenges, current research, and future directions related to disability employment. Dr. Taylor gave an overview of disability employment issues and shared results from her research that seeks to understand unemployment, underemploy-ment, and job stability among adults on the autism spectrum. In particular, she noted the influence of factors such as gender, family functioning, and family mental health on employment outcomes. Dr. Wehman then discussed his research using an internship model to discover evidence-based pathways to competitive integrated employment for people with ASD, including those with intellectual disabilities. He stressed the importance of a strengths-based approach to employment among adults with ASD rather than a deficits-based approach. He also noted that students who participated in his supported employment program had a positive impact on their supervisors and coworkers, and they were subsequently able to access jobs across diverse sectors. Next, Dr. Carter discussed the TennesseeWorks initiative, a systems change effort involving more than 50 state agencies, organizations, and community groups who work together to provide employment supports and opportunities for young people with disabilities. He emphasized the importance of elevating expectations among families, educators, and professionals, making information about programs accessible, and investing in partnerships between parent support organizations, disability nonprofits, employment-related agencies, and state departments. Dr. Annabi presented her research to understand employ-ment opportunities in the autism community from the perspective of employers, businesses, and for-profit organizations. She noted that autism-specific hiring initiatives that identify strengths and break down traditional recruitment barriers have great potential, but they should also align within the company’s values and existing diversity initiatives. She also emphasized that organizations should rely on leadership support to catalyze and reinforce culture changes. Finally, she noted that it will be important to encourage schools to begin early workplace preparation and include the voices of self-advocates as initiatives are developed and improved. This panel provided multiple perspectives on challenges and opportunities related to employment for autistic adults; the activities discussed address Question 6 of the IACC Strategic Plan.

July 2019

Panel Presentation: Using Innovation and Collaboration to Develop a Community Continuum of Care Model – Baton Rouge, Louisiana

Representative Franklin Foil
Louisiana House of Representatives

Lauren Crapanzano Jumonville, M.B.A.
Director, Civic Leadership Initiatives, Baton Rouge Area Foundation

Traci Olivier, Psy.D.
Pediatric Neuropsychologist, Our Lady of the Lake Physician Group

Melissa Juneau, CCC-SLP
Former CEO, The Emerge Center for Communication, Behavior, and Development

Stephen Whitlow, J.D.
Executive Director of Transition Services, Merakey Gateway

The participants on this panel discussed the Capital Area Autism Network (CAAN), a multi-tiered effort to increase and optimize ASD services across the lifespan in the Baton Rouge, LA area. Representative Foil gave a brief history of these efforts and an overview of the many local organizations involved. He also described his family’s efforts to find job opportunities and other resources for his child with ASD. Ms. Jumonville then described the work of the Baton Rouge Area Foundation, a non-profit organization that has been integrally involved in building the CAAN local network of ASD services. Additional key organizations involved in CAAN are the Emerge Center (an early intervention pediatric care center), Our Lady of the Lake Pediatric Development and Therapy Center, and Families Helping Families (a family resource center). Dr. Olivier provided background about the Our Lady of the Lake Children’s Health program for children with ASD, which provides diagnostic and intervention services. She also described the Center’s current partnerships and future directions. Ms. Juneau next described the work of the Emerge Center, which assists children with communication, behavioral, and developmental issues by providing audiology, occupational therapy, therapeutic classrooms, ABA, behavioral health services, and family support. Of note is the Emerge School for Autism, a charter school for children with ASD that aims to prepare them for general education classrooms. Finally, Mr. Whitlow noted the barriers to accessing transition services, transportation, and housing faced by individuals with ASD. He described the work of Merakey Gateway, an organization that provides job training and other transition services to young adults with ASD. The speakers in this panel emphasized the importance of diverse partners coming together to address the existing and emerging problems faced by their local communities. The activities presented by this panel demonstrated a model of community-based autism and disability services coordination and address Questions 1, 4, 5, and 6 of the IACC Strategic Plan.

Panel Presentation: Racial and Ethnic Disparities in Autism

Sandy Magaña, Ph.D., M.S.W.
Professor in Autism and Neurodevelopmental Disabilities, Steve Hicks School of Social Work, University of Texas at Austin

Temple Lovelace, Ph.D., B.C.B.A.-D.
Associate Professor of Special Education, Department of Counseling, Psychology, and Special Education, Duquesne University

Sarah Dababnah, Ph.D., M.P.H., M.S.W.
Assistant Professor, University of Maryland, Baltimore

Camille Proctor
Founder, The Color of Autism Foundation; Founding Member, National African American Autism Community Network

Matiana M. Ovalle

Jose Luis Ovalle
Regional Coordinator Region 1, The Autism Program of Illinois (TAP); Senior Advisor, Grupo SALTO

The participants on this panel discussed various research and community efforts to address the racial and ethnic disparities in autism screening, diagnosis, treatment, and services. Dr. Magaña first described the results of the CDC’s prevalence studies demonstrating that black and Latinx children tend to access ASD interventions later than other children, often due to misdiagnosis. She then described her work to develop culturally tailored interventions for Latinx families, as well as her research demonstrating reduced access to and utilization of general health care services among Latinx children compared to white children. Next, Dr. Lovelace discussed her research examining the difficulties that African American mothers in Philadelphia, PA experience in accessing autism services for their children. She presented qualitative data about these challenges, such as the significant stressors and barriers to locating services, accessing insurance, and finding providers who are a good cultural fit. Dr. Lovelace also discussed her work with the National African American Autism Community Network (NAAACN), a network devoted to fostering education and awareness of ASD in African American communities. Next, Dr. Dababnah presented her research that seeks to build community partnerships and develop culturally tailored interventions for African American families in Baltimore, MD. Using international autism research to inform their local program development, her team has determined that engaging community liaisons to tailor interventions, training parents, and recruiting non-specialist workers are key factors for success. Ms. Proctor then described her work with NAAACN advocating for African American individuals with ASD and their families. She highlighted the difficulties these families often face in overcoming stigma and stressed the need for research that is culturally relevant, multilevel, multidisciplinary, and inclusive of all families. Finally, Mr. and Mrs. Ovalle spoke about their work with Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo), a support group that aims to educate Hispanic families with children with disabilities, including autism. The group aims to educate parents and other extended family members of individuals with autism, focusing on leadership, self-care, and self-advocacy. The activities presented by this panel address the committee’s interest in issues related to reducing disparities in autism services and Questions 1, 4, 5, and 6 of the IACC Strategic Plan.

Department of Labor Apprenticeship Initiative

Scott Robertson, Ph.D.
Office of Disability Employment Policy, U.S. Department of Labor

Carolyn Jones, M.B.A.
Office of Disability Employment Policy, U.S. Department of Labor

Dr. Robertson and Ms. Jones described the Apprenticeship Inclusion Model (AIM) initiative, developed by the Department of Labor's Office of Disability Employment Policy (ODEP). The goal of this program is to research, test, and evaluate inclusive apprenticeships and integrated apprenticeship training for youth and adults with disabilities. The initiative works closely with companies in emerging industries that pay a livable, sustainable wage (including Microsoft, Amazon, and the Industry Manufacturing Technician program). AIM has funded several pilot programs, including two that are specifically focused on individuals with ASD. Dr. Robertson and Ms. Jones also discussed several other ODEP programs designed to increase and enhance employment opportunities for individuals with disabilities. The activities discussed in this presentation address Question 6 of the IACC Strategic Plan.


In 2018 and 2019, the IACC held 6 full committee meetings featuring presentations that address all seven of the IACC Strategic Plan research areas, in order to inform the committee of current issues, innovative approaches, and advances being made in each of these areas. Many of these presentations demonstrate progress towards the objectives established in the 2016-2017 Strategic Plan. Other presentations provide insight into research and services areas that need additional attention, investment, and/or improvement.

In the future, the IACC will continue to provide a platform at committee meetings for researchers and advocates to present their latest findings as well as inform the committee of current issues facing the community. This, along with input gathered through public comments, will continue to be used by the committee to develop activities and recommendations to federal agencies that can help improve the lives of people on the autism spectrum and their families.

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