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Strategic Plan Cover 2019

IACC Strategic Plan

For Autism Spectrum Disorder

2018-2019 Update

Appendices

About the IACC

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating Federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human Services (HHS) on issues related to autism. The Committee was established by Congress under the Children's Health Act of 2000, reconstituted under the Combating Autism Act (CAA) of 2006, and renewed most recently under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019.

Membership of the Committee includes a wide array of Federal agencies involved in ASD research and services, as well as public stakeholders, including self-advocates, family members of children and adults with ASD, advocates, service providers, and researchers, who represent a variety of perspectives from within the autism community. The IACC membership is composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by individuals and families affected by autism.

Under the CAA and subsequent authorizations, the IACC is required to (1) develop and annually update a strategic plan for ASD research, (2) develop and annually update a summary of advances in ASD research, and (3) monitor Federal activities related to ASD.

Through these and other activities, the IACC provides guidance to HHS and partners with other Federal departments, Federal agencies, research and advocacy organizations, and the broader autism community to accelerate research and enhance services with the goal of profoundly improving the lives of people with ASD and their families.

For more information about the IACC, see https://iacc.hhs.gov.

Vision Statement

The IACC Strategic Plan for ASD will accelerate and inspire research, and enhance service provision and access, that will profoundly improve the health and quality of life of every person on the autism spectrum across the lifespan. The Plan will provide a blueprint for ASD research and services efforts, engaging the participation and input of government agencies, private organizations, and the broader autism community.

Mission Statement

The purpose of the Strategic Plan s to focus, coordinate, and accelerate innovative research and foster development of high-quality services in partnership with stakeholders to address the urgent questions and needs of people on the autism spectrum and their families.

Core Values

The IACC adopted the below core values and emphasized their significance to the 2016-2017 Strategic Plan and to the 2018-19 IACC Strategic Plan Update:

Sense of Urgency: We will focus on responding rapidly and efficiently to the needs and challenges of people on the autism spectrum and their families.

Excellence: We will pursue innovative scientific research of the highest quality and development and dissemination of evidence-based services and practices to maximize the quality of life for people on the autism spectrum.

Spirit of Collaboration: We will treat others with respect, listen with open minds to the diverse views of people on the autism spectrum and their families, thoughtfully consider community input, and foster discussions where participants can comfortably offer opposing opinions.

Community Focus: We will focus on making a difference in the lives of people affected by ASD, including people with ASD, their families, medical practitioners, educators, and scientists. It is important to consider the impact of research on the quality of life, human rights, and dignity of people with ASD, from prenatal development forward.

Partnerships in Action: We will value cross-disciplinary approaches, data sharing, teamwork, and partnerships to advance ASD research and service activities.

Equity: We will prioritize improved access to detection, intervention, and other services and supports for individuals with ASD, and commit to the goal of reducing disparities across the lifespan, spectrum of ability and disability, sex and gender, racial and cultural boundaries, socioeconomic status, and geographic location to improve the health and quality of life of all individuals with ASD.

Please note: The terms "person with autism," "person with ASD," "autistic person," and "person on the autism spectrum" are used interchangeably throughout this document. Some members of the autism community prefer one term, while others prefer another. The Committee respects the different opinions within the community on the use of this language and does not intend to endorse any particular preference. In addition, the terms "autism" and "autism spectrum disorder (ASD)" are used interchangeably throughout this document unless otherwise noted.

Interagency Autism Coordinating Committee Member Roster

Chair

  • Joshua Gordon, M.D., Ph.D. Director National Institute of Mental Health National Institutes of Health Rockville, MD

Federal Members

  • Melinda Baldwin, Ph.D. Child Welfare Program Specialist Children’s Bureau Administration for Children and Families Washington, DC
  • Diana W. Bianchi, M.D. Director Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Linda S. Birnbaum, Ph.D., D.A.B.T., A.T.S. Director National Institute of Environmental Health Sciences and National Toxicology Program National Institutes of Health Research Triangle Park, NC
  • Francis S. Collins, M.D., Ph.D. Director National Institutes of Health Bethesda, MD
  • Tiffany R. Farchione, M.D. Deputy Director Division of Psychiatry Products U.S. Food and Drug Administration Silver Spring, MD
  • Melissa L. Harris Acting Deputy Director Disabled and Elderly Health Programs Group Centers for Medicaid and CHIP Services Center for Medicare and Medicaid Services Baltimore, MD
  • Elaine Cohen Hubal Ph.D. (alternate) Senior Science Advisor Office of Children’s Health Protection Environmental Protection Agency Washington, DC
  • Jennifer Johnson, Ed.D. Deputy Director Administration on Intellectual and Developmental Disabilities Administration for Community Living U.S. Department of Health and Services Washington, DC
  • Laura Kavanagh, M.P.P. Deputy Associate Administrator Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
  • Walter J. Koroshetz, M.D. Director National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD
  • Laura Pincock, Pharm.D., M.P.H. Pharmacist Officer Agency for Healthcare Research and Quality Rockville, MD
  • Marcella Ronyak, Ph.D., L.C.S.W., C.D.P. Director Division of Clinical & Community Services Indian Health Service (IHS) Headquarters Rockville, MD
  • Stuart K. Shapira, M.D., Ph.D. Associate Director Science and Chief Medical Officer National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
  • Melissa Spencer Deputy Associate Commissioner Office of Disability Policy Social Security Administration Baltimore, MD
  • Larry Wexler, Ed.D. Director Research to Practice      Office of Special Education Programs U.S. Department of Education Washington, DC
  • Nicole Williams, Ph.D. Program Manager Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD

Public Members

  • David Amaral, Ph.D. Distinguished Professor Department of Psychiatry & Behavioral Science University of California, Davis Research Director UC Davis MIND Institute Sacramento, CA
  • James Ball, Ed.D., B.C.B.A.-D. President and CEO JB Autism Consulting Cranbury, NJ
  • Samantha Crane, J.D. Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
  • Geraldine Dawson, Ph.D. Professor Department of Psychiatry and Behavioral Science Duke University Medical Center Director Duke Center for Autism and Brain Development Durham, NC
  • David S. Mandell, Sc.D. Director Center for Mental Health Policy and Services Research Associate Professor Psychiatry and Pediatrics Perelman School of Medicine University of Pennsylvania Philadelphia, PA
  • Kevin Pelphrey, Ph.D. Harrison-Wood Jefferson Scholars Foundation Professor of Neurology & Professor Curry School of Education University of Virginia Charlottesville, VA
  • Edlyn Peña, Ph.D. Associate Professor Educational Leadership and Director of Doctoral Studies California Lutheran University Thousand Oaks, CA
  • Louis Reichardt, Ph.D. Director Simons Foundation Autism Research Initiative New York, NY
  • Robert H. Ring, Ph.D. Chief Executive Officer Kaerus Bioscience Newtown, PA
  • John Elder Robison Neurodiversity Scholar in Residence College of William and Mary Amherst, MA
  • Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY
  • Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics Investigator, Vanderbilt Kennedy Center Vanderbilt University Medical Center Nashville, TN

IACC Alternates

  • Patricia Dietz, Dr.P.H. (for Stuart K. Shapira, M.D., Ph.D.) Chief Developmental Disabilities Branch National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta, GA
  • Andrew Morris, M.P.H. (for Jennifer Johnson, Ed.D) Policy Analyst Administration on Intellectual and Developmental Disabilities Administration for Community Living Washington, DC
  • Alice Kau, Ph.D. (for Diana W. Bianchi, M.D.) Health Scientist Administrator Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Cindy Lawler, Ph.D. (for Linda Birnbaum, Ph.D., D.A.B.T., A.T.S.) Chief Genes, Environment and Health Branch National Institute of Environmental Health Sciences National Institutes of Health Research Triangle Park, NC
  • Laura Mamounas, Ph.D. (for Walter Koroshetz, M.D.) Program Director Neurogenetics Cluster National institute of Neurological Disorders and Stroke Bethesda, MD
  • Shui-Lin (Stan) Niu, Ph.D. (for Nicole Williams, Ph.D.) Science Officer Congressionally Directed Medical Research Programs U.S. Department of Defense Frederick, MD
  • Robyn Schulhof, M.A. (for Laura Kavanagh, M.P.P.) Senior Public Health Analyst Leadership Education in Neurodevelopmental and Related Disabilities Associate of University Centers on Disabilities Cooperative Agreement Maternal and Child Health Bureau Health Resources and Services Administration Rockville, MD
  • Nina Schor, Ph.D. (for Walter Koroshetz, M.D.) Deputy Director National Institute of Neurological Disorders and Stroke Bethesda, MD
  • Carrie Wolinetz, Ph.D. (for Francis Collins, M.D., Ph.D.) Associate Director for Science Policy National Center for Complementary and Alternative Medicine National Institutes of Health Bethesda, MD

IACC Health Outcomes Working Group Member Roster

Chairs

  • David Amaral, Ph.D. Distinguished Professor Department of Psychiatry and Behavioral Sciences University of California, Davis (UC) Research Director UC Davis MIND Institute Sacramento, CA
  • Julie Lounds Taylor, Ph.D. Assistant Professor of Pediatrics Investigator, Vanderbilt Kennedy Center Vanderbilt University Medical Center Nashville, TN

IACC and Federal Agency Members

  • Samantha Crane, J.D. Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
  • Patricia Dietz, Dr.P.H., M.P.H. Chief Developmental Disabilities Branch National Center for Birth Defects and Developmental Disabilities U.S. Centers for Disease Control and Prevention Atlanta, GA
  • Jennifer Johnson, Ed.D. Deputy Commissioner Administration on Intellectual and Developmental Disabilities Administration for Community Living U.S. Department of Health and Services Washington, DC
  • Alice Kau, Ph.D. Program Director Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD
  • Kevin Pelphrey, Ph.D. Harrison-Wood Jefferson Scholars Foundation Professor of Neurology & Professor Curry School of Education University of Virginia
  • Scott Michael Robertson, Ph.D. Policy Advisor Employment-Related Supports Team Office of Disability Employment Policy U.S. Department of Labor Washington, DC
  • Marcella Ronyak, Ph.D., LCSW, CDP Director Division of Clinical & Community Services Indian Health Service Rockville, MD
  • Nina Schor, M.D., Ph.D. Deputy Director National Institute of Neurological Disorders and Stroke Bethesda, MD
  • Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY

External Participants

  • Gregory Barnes, M.D., Ph.D. Director, University of Louisville Autism Center Associate Professor, Child Neurology, Department of Neurology University of Louisville School of Medicine Louisville, KY
  • Timothy Buie, M.D. Attending Physician Division of Gastroenterology, Hepatology and Nutrition Boston Children’s Hospital Assistant Professor of Pediatrics Harvard Medical School Boston, MA
  • Sarah Cassidy, Ph.D. Assistant Professor, School of Psychology University of Nottingham Room B70, School of Psychology University Park Nottingham, NG7 2RD
  • Dan Coury, M.D. Chief, Section of Developmental and Behavioral Pediatrics Nationwide Children’s Hospital Professor, Clinical Pediatrics and Psychiatry The Ohio State University College of Medicine Columbus, OH
  • Lisa Croen, Ph.D. Senior Research Scientist, Division of Research Kaiser Permanente Northern California Director, Kaiser Permanente Autism Research Program Oakland, CA
  • Craig Erickson, M.D. Associate Professor, Department of Psychiatry and Behavioral Neuroscience University of Cincinnati Cincinnati, OH
  • Sarah Gardner Founding family member and Advisory Council member, MIND Institute University of California, Davis Sacramento, CA
  • Dena Gassner, M.S.W. Ph.D. Candidate, Adelphi University Adjunct Faculty, Adelphi University Adjunct Faculty, Towson University Board of Directors, The Arc US Professional Advisory Board Member, Asperger Syndrome and High Functioning Autism Association NY Garden City, NY
  • Katie Gotham, Ph.D. Assistant Professor Department of Psychology Rowan University Glassboro, NJ
  • Antonio Hardan, M.D. Professor of Psychiatry and Behavioral Sciences - Child and Adolescent Psychiatry and Child Development Stanford University Medical Center Stanford, CA
  • Darren Hedley, Ph.D. Olga Tennison Autism Research Centre School of Psychology and Public Health La Trobe University, Australia
  • Joseph Joyce, M.B.A. Executive Chair, Board of Directors Autism Society of America Harrisburg, PA
  • Connor Kerns, Ph.D. Assistant Professor, Psychology Department University of British Columbia Vancouver, BC CA
  • Bryan King, M.D., M.B.A. Vice Chair for Child and Adolescent Psychiatry, Department of Psychiatry University of California, San Francisco (UCSF) Vice President, Child Behavioral Health Services UCSF Benioff Children’s Hospitals San Francisco, CA
  • Anne Kirby, Ph.D., OTR/L. Assistant Professor Occupational & Recreational Therapies University of Utah Salt Lak City, UT
  • Clarissa Kripke, M.D. Clinical Professor, Department of Family and Community Medicine Director, Office of Developmental Primary Care University of California, San Francisco San Francisco, CA
  • Brenna Maddox, Ph.D., LCP Postdoctoral Fellow and Clinical Psychologist, Penn Center for Mental Health University of Pennsylvania Philadelphia, PA
  • Beth Ann Malow, M.D., M.S. Burry Chair in Cognitive Childhood Development Professor of Neurology and Pediatrics Vanderbilt Kennedy Center Director, Vanderbilt Sleep Disorders Division Vanderbilt University Medical Center Nashville, TN
  • Carla Mazefsky, Ph.D. Associate Professor of Psychiatry and Psychology University of Pittsburgh Pittsburgh, PA
  • Micah Mazurek, Ph.D. Associate Professor of Education Curry School of Education University of Virginia Charlottesville, VA
  • Donna Murray, Ph.D. Vice President, Clinical Services Head, Autism Treatment Network Autism Speaks Adjunct Associate Professor of Clinical Pediatrics, Division of Developmental and Behavioral Pediatrics Cincinnati Children’s Hospital Department of Pediatrics University of Cincinnati Cincinnati, OH
  • Christina Nicolaidis, M.D., M.P.H. Professor and Senior Scholar in Social Determinants of Health, School of Social Work Co-Director, Academic Autism Spectrum Partnership in Research and Education Portland State University Adjunct Associate Professor, Division of General Internal Medicine Oregon Health and Science University Portland, OR
  • Dora Raymaker, Ph.D. Research Assistant Professor, Regional Research Institute for Human Services, School of Social Work Co-Director, Academic Autism Spectrum Partnership in Research and Education Portland State University Portland, OR
  • Judith Reaven, Ph.D. Associate Professor, Departments of Psychiatry & Pediatrics University of Colorado Anschutz Medical Campus Aurora, CO
  • Elliott Sherr, M.D., Ph.D. Director, Comprehensive Center for Brain Development Professor, Department of Neurology University of California, San Francisco San Francisco, CA
  • Matthew Siegel, M.D. Vice President Medical Affairs, Developmental Disorders Service, Maine Behavioral Healthcare Associate Professor of Psychiatry & Pediatrics, Tufts University School of Medicine Faculty Scientist II, Maine Medical Center Research Institute South Portland, ME
  • Sarah Spence, M.D., Ph.D. Co-Director, Autism Spectrum Center Boston Children’s Hospital Assistant Professor of Neurology Harvard Medical School Boston, MA
  • Jeremy Veenstra-VanderWeele, M.D. Ruane Professor for The Implementation of Science for Child and Adolescent Mental Health Director, Division of Child and Adolescent Psychiatry Co-Director, Whitaker Scholar Program in Developmental Neuropsychiatry, Department of Psychiatry Columbia University New York, NY

IACC Housing Working Group Member Roster

Chair

  • Alison Tepper Singer, M.B.A. President Autism Science Foundation Scarsdale, NY

IACC and Federal Agency Members

  • Samantha Crane, J.D. Legal Director and Director of Public Policy Autistic Self Advocacy Network Washington, DC
  • Daniel Davis Health Policy Analyst Office of Policy Analysis and Development Center for Policy and Evaluation Administration for Community Living Washington, DC
  • Veronica Helms Garrison, M.P.H. Social Science Analyst Office of Policy Development and Research Office of Research, Evaluation and Monitoring U.S. Department of Housing and Urban Development Washington, DC
  • Melissa L. Harris Acting Deputy Director Disabled and Elderly Health Programs Group Center for Medicaid and CHIP Services Centers for Medicare and Medicaid Services Baltimore, MD
  • Kevin Pelphrey, Ph.D. Harrison-Wood Jefferson Scholars Foundation Professor of Neurology & Professor Curry School of Education University of Virginia Charlottesville, VA
  • Scott Robertson, Ph.D. Policy Advisor Employment-Related Supports Team Office of Disability Employment Policy U.S. Department of Labor Washington, DC
  • Emily Rosenoff Acting Director Division of Long-Term Care Policy Office of the Assistant Secretary for Planning and Evaluation Washington, DC
  • Debra Tidwell-Peters Social Insurance Specialist Office of Research, Demonstration and Employment Support Social Security Administration Baltimore, MD

Public Members

  • Max Barrows Outreach Director Green Mountain Self-Advocates Montpelier, VT
  • Jill Escher, J.D., M.A. Claradon Properties, LLC San Fransisco, CA
  • Lori Ireland, M.B.A. President Ireland Family Foundation Co-Founder, Board Member, Extraordinary Ventures Chapel Hill, NC
  • Ben Kaufman, M.S.W. Senior Manager, MCH Technical Assistance Association of University Centers on Disabilities Silver Spring, MD
  • Kim Musheno Vice President of Public Policy Autism Society Washington, DC
  • Desiree Kameka. M.T.S. Director of Community Education & Advocacy Madison House Autism Foundation Gaithersburg, MD
  • Arun Karpur, M.D., M.P.H. Director Data Science and Evaluation Research Autism Speaks New York, NY
  • Amy Lutz, M.A., M.F.A President EASI Foundation Philadelphia, PA
  • Denise Resnik CEO and Co-Founder DRA Collective Phoenix, AZ
  • Jay Shukert Parent, Advocate San Francisco, CA
  • Ivanova Smith Activist Advocate AtWork! Tacoma, WA
  • Stephen Whitlow, J.D. Executive Director Merakey Gateway Transition Services Baton Rouge, LA

Office of Autism Research Coordination (OARC)

  • Susan Daniels, Ph.D. Director
  • Oni Celestin, Ph.D. Health Science Policy Analyst
  • Katrina Ferrara, Ph.D. Health Science Policy Analyst
  • Rebecca Martin, M.P.H. Public Health Analyst
  • Angelice Mitrakas, B.A. Management Analyst
  • Julianna Rava, M.P.H. Health Science Policy Analyst
  • Matthew Vilnit, B.S. Operations Coordinator
  • Jeffrey Wiegand, B.S. Web Development Manager

Cover Design

Medical Arts Branch, Office of Research Services, National Institutes of Health

Copyright Information

This report is a Work of the United States Government. A suggested citation follows.

Suggested Citation

Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) 2018-2019 Update. July 2020. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/strategic-plan/2019/.


Appendices

 
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