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IACC Full Committee Meeting (Virtual)

The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be held virtually and is open to the public.

meeting announcement Event Information

Topic Topic Description
Dates: Wednesday, April 13, 2022; 1:00 - 5:00 p.m. ET
Thursday, April 14, 2022; 1:00 - 5:00 p.m. ET
Cost: The event is free and open to the public.
Public Comments: The IACC welcomes public comment from members of the autism community. Please review IACC's "Spirit of Collaboration," public comment guidelines, and full instructions prior to submitting your comment. The deadline for submission of comments for the April 13-14 IACC meeting is Friday, April 1, 2022.
Disability Accommodations: Captioning will be available. Individuals who need sign language interpreters and/or other reasonable accommodations to participate in this event may contact Rebecca Martin at Rebecca.martin@nih.gov or 301-435-0886. Please make accommodation requests 7 business days prior to the event. The event is recommended for ages 13 and up.


meeting agenda Agenda

Time Event
 1:00 p.m.
Welcome
Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
Acting National Autism Coordinator
 1:15
Autism Awareness Month Greeting from the National Institutes of Health (NIH)
Tara Schwetz, Ph.D.
Acting Principal Deputy Director, NIH
 1:30
Updates on Disability Housing Programs
HUD Supportive Housing Programs & Research
Teresa Souza, Ph.D.
Social Science Analyst
Office of Policy Development and Research
U.S. Department of Housing and Urban Development
Overview of the Housing and Service Resource Center
Lori Gerhard
Director, Office of Interagency Innovation
Administration for Community Living (ACL)
Autism and Homelessness: Experiences from the Bergen County, New Jersey Housing, Health & Human Services Center
Julia Orlando (Presented by Susan Daniels, Ph.D.)
Director
Bergen County (NJ) Housing, Health and Human Services Center
 2:40
Break
 2:55
Discussion of the IACC Charge
Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC
 3:15
National Autism Coordinator Update
Susan Daniels, Ph.D.
Acting National Autism Coordinator
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
 3:30
IACC Committee Business
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
Acting National Autism Coordinator
 3:30
Autism Awareness Month
 3:40
IACC Strategic Plan
 4:25
IACC Summary of Advances
 5:00
Adjournment - Day 1
Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
Acting National Autism Coordinator


Time Event
 1:00 p.m.
Public Comment Session
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
Acting National Autism Coordinator
 1:00
Virtual Comments
  • Eileen Nicole Simon, R.N., Ph.D.
  • Stevie Mays
  • Lisa Morgan, M.Ed.
  • Bob Williams, CommunicationFIRST
  • Edlyn Peña, Ph.D.
 1:25
Summary of Written Comments
 1:30
Committee Discussion
 1:55
Break
 2:10
Perspectives on Addressing Diverse Communication Needs in Autism
 2:10
Introduction
Judith Cooper, Ph.D.
Deputy Director
National Institute on Deafness and Other Communication Disorders
NIH
 2:20
Advancing Research on Minimally Verbal ASD
Helen Tager-Flusberg, Ph.D.
Professor, Department of Psychological and Brain Sciences
Director, Center for Autism Research Excellence
Boston University
Connie Kasari, Ph.D.
Professor of Human Development and Psychology
UCLA Graduate School of Education & Information Studies
Professor of Psychiatry
UCLA Department of Psychiatry and Biobehavioral Sciences
David Geffen School of Medicine at UCLA
 3:00
Augmentative and Alternative Communication Supports for Individuals with Autism
Janice Light, Ph.D.
The Hintz Family Endowed Chair in Children's Communicative Competence
Professor of Communication Sciences and Disorders
Pennsylvania State University
 3:20
Lived Experience Perspectives
 3:20
Jordyn Zimmerman
Autistic Self-Advocate
 3:35
Benita Shaw
Parent Advocate
 3:50
Committee Discussion
 4:20
Break
 4:25
IACC Committee Business: Summary of Advances Discussion (continued)
 4:45
Round Robin Updates
 4:55
Closing Remarks and Adjournment - Day 2
Joshua Gordon, M.D., Ph.D.
Director, National Institute of Mental Health (NIMH) and Chair, IACC
Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC
Acting National Autism Coordinator

Schedule is subject to change. For more information on upcoming events, please see https://iacc.hhs.gov/meetings/iacc-meetings/

Next IACC Meetings:

Tentative Strategic Plan Workgroup Meeting
Wednesday, July 13, 2022; 1:00 p.m. - 5:00 p.m. ET (Virtual)
Thursday, July 14, 2022, 1:00 p.m. - 5:00 p.m. ET (Virtual)

IACC Full Committee Meeting
Wednesday, October 26, 2022, 10:00 a.m. - 5:00 p.m. ET (Virtual)



meeting speakers Speakers

Tara Schwetz, Ph.D.

Acting Principal Deputy Director, NIH

Tara Schwetz, Ph.D.

Tara A. Schwetz, Ph.D., is the Acting Principal Deputy Director of the National Institutes of Health (NIH). For much of 2021, Dr. Schwetz was on detail to the White House Office of Science and Technology Policy as the Assistant Director for Biomedical Science Initiatives. In this role, she led the efforts to stand up the Advanced Research Projects Agency for Health (ARPA-H). The Biden Administration has proposed ARPA-H to tackle some of the biggest health challenges facing Americans by driving medical innovation more rapidly. Since 2019, Dr. Schwetz has served as the Associate Deputy Director of NIH and the Alternate Deputy Ethics Counselor for NIH. Throughout her nearly 10-year tenure at NIH, Dr. Schwetz has held multiple positions across several Institutes and within the Office of the Director. She has served as the Acting Director and Acting Deputy Director of the National Institute of Nursing Research (NINR), the Chief of the Strategic Planning and Evaluation Branch at the National Institute of Allergy and Infectious Diseases, the Senior Advisor to the Principal Deputy Director of NIH, the NIH Environmental influences on Child Health Outcomes Interim Associate Program Director, and a Health Science Policy Analyst at the National Institute of Neurological Disorders and Stroke. Dr. Schwetz started her career at NIH as an AAAS Science and Technology Policy Fellow at NINR. She received a B.S. in biochemistry with honors from Florida State University and a Ph.D. in biophysics from the University of South Florida, followed by a postdoctoral fellowship at Vanderbilt University.

Teresa Souza, Ph.D.

Social Science Analyst, Office of Policy Development and Research, U.S. Department of Housing and Urban Development

Teresa Souza, Ph.D.

Dr. Teresa Souza serves as a social science analyst within the U.S. Department of Housing and Urban Development's Office of Policy Development and Research (HUD/PD&R). Since joining HUD in 2010, Dr. Souza has focused on the development and implementation of the Department's research agenda for supportive housing for persons with disabilities. In this capacity, she has managed a multi-phased evaluation contract of the Section 811 supportive housing program for persons with disabilities and is the subject matter expert for a contract to evaluate the Mainstream voucher program for persons with disabilities. Dr. Souza is the co-author of a Housing Policy Debate article on health and health services access among adults with disabilities who receive federal housing assistance (2017) and the lead author of a Report to Congress on the Worst-Case Housing Needs of people with disabilities (2011). Prior to joining HUD, she worked for six years at the Inter-American Development Bank, where she designed and evaluated housing and urban development programs in several countries in Latin America. She earned a Bachelor of Architecture and Urban Planning degree and a Master of Architecture and Urban Planning degree from the University of Sao Paulo, Brazil, and a Ph.D. in Urban Studies from the University of Maryland.

Lori Gerhard, B.S.

Director, Office of Interagency Innovation, Administration for Community Living

Lori Gerhard, B.S.

Ms. Lori Gerhard has over fourteen years of experience working at the federal level in the Administration for Community Living (ACL) and in the Administration on Aging (AoA) helping to increase the quality of life for older adults and people with disabilities of any age. In her role, she facilitates and develops partnerships with other Federal departments and HHS agencies on innovative activities, policies, and technical assistance to advance federal resources to address social determinants of health. In addition, she works with the National Institute on Disability and Rehabilitation Research (NIDILRR) and other ACL offices to facilitate and accelerate the translation of relevant research findings into practice nationwide. She supports state and community efforts to strengthen partnerships that increase access to and help people with disabilities, older adults and caregivers obtain and maintain affordable and accessible housing, assistive technology, and the services to live at home and fully participate in the community. Prior to federal service, Ms. Gerhard worked in the Pennsylvania Department of Aging where she managed a $825 million budget and administered more than 50 services and benefits that served older Americans and their caregivers. Ms. Gerhard received her Bachelor of Science Degree from Penn State University.

Julia Orlando

Director, Bergen County (NJ) Housing, Health and Human Services Center

Julia Orlando

Ms. Julia Orlando is the Director of the Bergen County Housing, Health and Human Services Center in Hackensack, NJ. The mission of this nationally recognized and award winning Center is to end homelessness in Bergen County. Ms. Orlando has over 25 years of clinical and managerial experience developing and providing social services in New York and New Jersey to individuals with co-occurring mental health and substance use disorders, and others experiencing chronic homelessness, prisoner reentry or involved in jail diversion programs. In 2016, Ms. Orlando provided leadership for the successful community-wide effort to end veteran homelessness in Bergen County as part of the Mayors Challenge. Bergen County is the first jurisdiction in the state and among the first 28 nationally to achieve this goal and was recognized at White House for their successful contributions to the First Lady’s Opening Doors Initiative to end Veterans Homelessness. Ms. Orlando also provided leadership that led to Bergen County becoming the first in the nation in 2017 to successfully reach functional zero for chronic homelessness in Bergen County and the only community to date to sustain zero for more than one year. Ms. Orlando is the recipient of numerous awards including the 2017 “Distinguished Citizen of the Year” from the Hackensack Chamber of Commerce and the 2017 “Woman of Action” award from the YWCA of Bergen County. From 2012-14, Ms. Orlando served as a member of the Governor’s Interagency Council to End Homelessness and from 2015-2017 on the Governor’s Homeless Work Group charged with implementing the recommendations of the Council. Ms. Orlando serves on the faculty of the Silberman School of Social Work at Hunter College and has provided consultation and training for a wide variety of non-profit organizations. Ms. Orlando earned her BS in Psychology from Fordham University and Master’s degrees in Counseling Psychology and Organizational Psychology from Columbia University.

Judith A. Cooper, Ph.D.

Deputy Director, National Institute on Deafness and Other Communication Disorders, National Institutes of Health

Judith A. Cooper, Ph.D.

Dr. Judith Cooper is currently Deputy Director of the National Institute on Deafness and Other Communication Disorders at the NIH. In addition, she serves as Director, Division of Scientific Programs, within NIDCD. She has programmatic responsibilities for the areas of language, language impairments, and language in deaf individuals. Dr. Cooper's current responsibilities include overseeing and coordinating the activities of her division; advising within NIDCD and across the NIH regarding issues related to language and language disorders; participating in trans-NIH initiatives focused in language as well as autism; and, working with potential and funded researchers in language across the US and beyond, providing advice, direction, and encouragement related to research grant focus, development and preparation. She received her B.F.A. at Southern Methodist University in 1971 with a major in Speech-Language Pathology, her M.S. in Speech-Language Pathology at Vanderbilt University in 1972, and her Ph.D. at the University of Washington in 1982 in Speech and Hearing Sciences. She was elected a Fellow of the American Speech-Language-Hearing Association in 2006 and received the Honors of the Association in 2007.

Helen Tager-Flusberg, Ph.D.

Professor, Department of Psychological and Brain Sciences; Director, Center for Autism Research Excellence, Boston University

Helen Tager-Flusberg, Ph.D.

Dr. Helen Tager-Flusberg is Professor of Psychological and Brain Sciences and Director of the Center for Autism Research Excellence at Boston University. She has devoted her career to conducting research on autism and other neurodevelopmental disorders exploring variability in phenotypic expression, investigating developmental and intervention-based changes in language and social cognition using behavioral and brain imaging methodologies, and developing new measures to assess language across the full range of the autism spectrum. Her research has been funded by NIH, other government agencies, and private foundations, and she has led several NIH multi-site multidisciplinary autism research programs: Collaborative Programs of Excellence in Autism (CPEA), Studies to Advance Autism Research & Treatment (STAART), and Autism Centers of Excellence (ACE). She has edited seven books and written over 250 journal articles and book chapters. She is the Past President of INSAR (2011-2013) and received the INSAR Lifetime Achievement Award in 2021 for her lasting contributions to research on autism.

Connie Kasari, Ph.D.

Professor of Human Development and Psychology, Graduate School of Education & Information Studies; Professor of Psychiatry; Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, University of California, Los Angeles

Connie Kasari, Ph.D.

Dr. Connie Kasari is a professor of Psychiatry at the David Geffen School of Medicine at UCLA and a leading international expert in developing interventions for children with autism and their families. Her research focuses on targeted interventions for early social communication development in at-risk infants, toddlers, and preschoolers with autism, and peer relationships for school-aged children with autism, leading to the recognition of her therapy JASPER as an established evidence-based ASD treatment. Much of this work involves populations that have traditionally been understudied and underrepresented in research, including low-resourced children and minimally verbal children. Her work is often conducted in schools. She has published widely on topics related to social, emotional, and communication development and intervention in autism. Dr. Kasari is on the science advisory boards of Autism Speaks and the Mount Sinai Seaver Autism Center. Dr. Kasari earned a M.A. from the Peabody College at Vanderbilt University and her Ph.D. from the University of North Carolina, Chapel Hill.

Janice Light, Ph.D.

Professor, The Hintz Family Endowed Chair in Children's Communicative Competence, Department of Communication Sciences and Disorders, College of Health and Human Development, Pennsylvania State University

Janice Light, Ph.D.

Dr. Janice Light is a Distinguished Professor in the Department of Communication Sciences and Disorders at Penn State University. Her primary area of expertise is augmentative and alternative communication (AAC). Her research is focused on improving communication outcomes and enhancing quality of life for individuals who have complex communication needs, including individuals with autism spectrum disorder, cerebral palsy, Down syndrome, intellectual/ developmental disabilities, and other special needs. She is involved in a number of multidisciplinary collaborative research projects designed to enhance language and communication development for young children who require AAC; improve literacy outcomes with individuals who require AAC; enhance the communicative competence of individuals who require AAC; and improve the design of AAC technologies for individuals with complex communication needs and their families. Dr. Light is a project director for the Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC on AAC), a collaborative research center that is funded by the National Institute on Disability and Rehabilitation Research (NIDLRR). Dr. Light received her Ph.D. from the University of Toronto.

Jordyn Zimmerman, M.Ed.

Self-Advocate; Director of Professional Development, The Nora Project; Board Member, Communication First

Jordyn Zimmerman, M.Ed.

Ms. Jordyn ZImmerman is a nonspeaking autistic adult. She did not have access to effective augmentative and alternative communication (AAC) until she was 18. At this time, she began advocating for students and has since been determined to make sure every student is able to access effective communication and exercise their right to a truly inclusive education. While in college, she founded the Ohio University Sparkle Effect Team; the seventh, inclusive collegiate team in the nation. Ms. Zimmerman is currently the Director of Professional Development at The Nora Project, an organization that promotes disability inclusion by empowering educators and engaging students and communities. She is also on the board of CommunicationFIRST, a nonprofit organization that protects and advances the civil rights of those who cannot rely on speech alone to be heard or understood. Ms. Zimmerman earned her Bachelors Degree in Education Policy from Ohio University and her Masters of Education at Boston College.

Benita Shaw, B.S.

Parent Advocate; Community Education Specialist, Resource Center; Facilitator, Sankofa Parent Support Group, UC Davis MIND Institute, University of California, Davis

Benita Shaw, B.S.

Ms. Benita Shaw is a proud mother of two young men, one of whom is on the autism spectrum. Ms. Shaw works as a Community Education Specialist at the UC Davis MIND Institute in the Resource Center and is a facilitator for the Sankofa parent support group at the MIND Institute. She is a board member for Supported Life Institute as well as the Disability Rights Education and Defense Fund (DREDF). Ms. Benita serves on the advisory committees for State Council on Developmental Disabilities, Alta Regional Center Self-Determination and Sacramento City Unified School District CAC. She is also a participant on the Mind The Gap Community Collaborative Advisory Committee with the MIND Institute and a family navigator (FN) coach and the FN facilitator for the parent group with the (CEDD) Center for Excellence in Developmental Disabilities Family Navigator Program. After many years of advocating for her son in 2017, she founded the GIFTS Foundation (Give Information and Support For Families to Triumph Successfully) which is a 501(c)3. Ms. Shaw has two Associates of Arts Degree (one in Human Services and the other in Drug and Alcohol Counseling) and a Bachelor of Science Degree in Psychology and Ethics.



meeting materials Materials

IACC Members


OARC Spring Newsletter


January Meeting Minutes


IACC Committee Business


Materials related to Presentations


National Autism Coordinator Update


Round Robin Documents


meeting slides Slides


meeting comments Public Comments


meeting transcript Transcripts

meeting webcast Full Meeting Videos

Day 1: Wednesday, April 13, 2022
Day 2: Thursday, April 14, 2022

 
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