IACC Full Committee Meeting (Hybrid)
Full Meeting Video
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Event Information
| Topic | Topic Description |
|---|---|
| Date: | Wednesday, July 10, 2024 |
| Time: | 10:00 a.m. to 5:00 p.m. ET |
| In-Person Location: | National Institute of Mental Health (NIMH) 6001 Executive Boulevard, Neuroscience Center (NSC) First Floor Conference Room Rockville, MD 20852 |
| 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 July IACC meeting is Monday, June 24, 2024. |
| Disability Accommodations: | Captioning is available on NIH videocast. Individuals who need sign language interpreters, CART, and/or other reasonable accommodations to participate in this event in-person or online 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. |
Agenda
| Time | Event | ||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 10:00 a.m. | |||||||||||||||
| 10:20 | |||||||||||||||
| 10:35 | |||||||||||||||
| 10:45 | |||||||||||||||
| 11:45 |
Break
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| 12:00 p.m. | |||||||||||||||
| 12:45 |
Lunch Break
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| 1:45 |
|
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| 2:15 |
|
||||||||||||||
| 4:55 |
Schedule is subject to change. For more information on upcoming events, please see https://iacc.hhs.gov/meetings/iacc-meetings/
Speakers
FIWA Presentation
Lauren Raskin Ramos, M.P.H.
Director, Division of Maternal and Child Health Workforce Development, Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA)
Ms. Lauren Raskin Ramos is the Director of the Division of Maternal and Child Health Workforce Development at the Health Resources and Services Administration's Maternal and Child Health Bureau (MCHB). In this role, she leads federal efforts to educate and train the current and future maternal and child health workforce. Ms. Ramos is also the lead for MCHB's Autism investments in training, research and state systems development. Previously, she held leadership roles at the Association of Maternal and Child Health Programs and the Association of State and Territorial Health Officials. Ms. Ramos has also worked at the National Center for Education in Maternal and Child Health at Georgetown University on the Bright Futures Project, and at the American College of Obstetricians and Gynecologists. She served as an Officer of the Maternal and Child Health Section of the American Public Health Association (APHA) and as a Board member of the National Healthy Mothers, Healthy Babies Coalition. Ms. Ramos completed her MPH at the UCLA School of Public Health with a concentration in Community Health Sciences and received her BA in Sociology and a Certificate in Community Health from Tufts University. She is a recipient of APHA's Maternal and Child Health Young Professional Award.
Nicole Williams, Ph.D.
Program Manager, Congressionally Directed Medical Research Programs, U.S. Department of Defense
Dr. Nicole Williams is a Program Manager for the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DOD). She manages the Autism Research Program (ARP) and Pancreatic Cancer Research Program (PCARP). She leads the complete research program life cycle for both programs to invest over $20M annually in Congressional appropriations. Previously she was a Science Officer for CDMRP. She previously served as a federal member of the Interagency Autism Coordinating Committee, as well as on the Federal Interagency Working Group on Autism. Dr. Williams received her Ph.D. with honors in Chemistry from Loyola University.
Allyson Dean, Ed.D.
Inclusion and Disabilities Services Specialist, Office of Head Start, Administration for Children and Families
Dr. Allyson Dean is the Inclusion and Disabilities Services Specialist at the Office of Head Start (OHS) at the Administration for Children and Families (ACF). Additionally, she has leadership roles in Classroom Assessment and Scoring System (CLASS®) professional development and acts as one of the Federal Project Officers for the National Center on Early Childhood Development, Teaching, and Learning. Before her time at OHS, Dr. Dean provided technical assistance in the early childhood field at both state and national levels. During her tenure, Dr. Dean led the development of statewide training and technical assistance resources to promote inclusive early childhood education, early intervention, and early childhood special education. She also chaired the Governor’s Child Care Advisory Board and served on the advisory board for Child Development Services, Maine’s Intermediate Educational Unit, providing both Early Intervention and Free Appropriate Public Education under the supervision of the Maine Department of Education. Dr. Dean joined the OHS National Technical Assistance System in 2015, serving as the Senior Director of Training and Quality for the National Center on Early Childhood Development, Teaching and Learning. During her time at the Center, she led resource development and technical assistance on high quality inclusion and disabilities services, screening and assessment, and teaching and learning in inclusive Head Start settings. Dr. Dean earned her M.S. from Wheelock College and a doctorate in educational leadership from the University of Maine, focusing her dissertation on Head Start teacher efficacy in the provision of instructional support.
Barbara Roland, M.B.S., LPC
Supervisory Healthcare Administrator (Mental Health Chief), Division of Behavioral Health, Office of Clinical and Preventative Services, Indian Health Service (IHS)
Ms. Barbara Roland, M.B.S., LPC, is the Supervisory Healthcare Administrator (Mental Health Chief) for the Division of Behavioral Health in the Office of Clinical and Preventative Services at the Indian Health Service (IHS). She began her work with the IHS as the Supervisor of Behavioral Health at the Lawton Indian Hospital in 2015. Ms. Roland moved to the Behavioral Health Consultant position for the Oklahoma City Area in 2017. She served as a Military and Family Life Counselor (contractor) with the U.S. Army and the U.S. Air Force. Her work there included marriage and family counseling, child counseling, and presentations to military members and their families on behavioral health issues. She worked with soldiers prior to deployment for mission readiness and deployment issues. Prior to coming to IHS, Ms. Roland worked in the fields of substance use disorder and children and family counseling. She was crisis counselor at a public school system, professor of drug and alcohol abuse and psychology at a community college in Texas, owner of The Family Forum (private practice), and a military and family life counselor. She is a Citizen of the Cherokee Nation. Ms. Roland received her Master of Behavioral Studies (Counseling Psychology) from Southeastern Oklahoma State University in Durant, Oklahoma and a Bachelor of Business Administration from Northwood University in Cedar Hill, Texas.
Maxine Kellman, D.V.M., Ph.D., P.M.P.
Senior Public Health Analyst, Office of Strategy, Policy, and Requirements, Administration for Strategic Preparedness and Response (ASPR), Department of Health and Human Services
Dr. Maxine Kellman is Senior Public Health Analyst and the Designated Federal Officer (DFO) for the National Advisory Committees on Seniors and Disasters (NACSD) within the National Advisory Committees Branch in the Policy Division of the Office of Strategy, Policy, and Requirements (OSPR) in the Administration for Strategic Preparedness and Response (ASPR) in the Office of the Secretary (OS) for the Department of Health and Human Services (HHS). In this capacity, Dr. Kellman leads federal advisory committee discussions related to scientific, technical, and other matters related to public health emergency preparedness and response. Concurrently, Dr. Kellman is an Excellence in Government (EIG) Fellow for the 2024-2025 EIG Fellows Program Cohort. She is a Certified Project Management Professional (PMP) and a Six Sigma Green Belt with over 15 years’ experience in biomedical research with a focus in zoonotic diseases and program development. Dr. Kellman is active as a community volunteer, assisting several youth organizations, and is dedicated to increasing under-represented student populations as future leaders in the STEM fields. Dr. Kellman has a B.S. degree in Biology with a concentration in Neurobiology and Behavior from Cornell University, a Doctor of Veterinary Medicine (DVM) from Tuskegee University College of Veterinary Medicine (TUCVM) and PhD in Immunology and Parasitology from the VA-MD Regional College of Veterinary Medicine at Virginia Tech.
Sherman Gillums, Ed.D.
Director, Office of Disability Integration and Coordination, Federal Emergency Management Agency (FEMA), Department of Homeland Security
Sherman Gillums, Jr., Ed.D, a native of Buffalo, New York, serves as FEMA’s disability coordinator and the director of its Office of Disability Integration and Coordination (ODIC), located in the agency’s Washington D.C. headquarters. In his role, Sherman advises FEMA Administrator Criswell on meeting the agency’s commitment to equity in emergency management for people with disabilities, including older adults and others with access and functional needs. Since joining FEMA in August 2022, Sherman has deployed to six disasters and led the national-level public narrative for people with disabilities on nearly a dozen emergency response efforts, in his capacity as the agency’s lead advisor on disability integration. In March 2023, Sherman released to the FEMA workforce his Director’s Intent, “A Guide to Meeting the Disability Integration Mission.” The vision focuses on 14 potential points of inequity and a pre-landfall risk assessment that can substantially extend the disaster lifecycle for people with disabilities and older adults. Before joining FEMA, Sherman led strategic operations for the National Alliance on Mental Illness and served as executive director of Paralyzed Veterans of America and chief strategy and advocacy officer for AMVETS. He was also recognized by HillVets as among the 100 most influential voices on Capitol Hill in 2016 and personally recognized by The White House for noteworthy “service to our nation and the Secretary of Veteran Affairs for “exceptional leadership.” A United States veteran, Sherman joined the U.S. Marine Corps at age 17 and served for 12 years before medically retiring at the rank of Chief Warrant Officer 2. He holds a graduate degree from the University of San Diego School of Business, where he was inducted into its hall of honor. Sherman completed his executive education at Harvard Business School, and he earned his doctoral degree in education at the University of Dayton in 2024.
Family Caregivers Presentations
Jennifer Johnson, Ed.D.
Deputy Commissioner, Administration on Disabilities, Administration for Community Living (ACL)
Dr. Jennifer Johnson is the Deputy Commissioner of the Administration on Disabilities (AoD), part of the U.S. Department of Health and Human Services' Administration for Community Living (ACL). She is also the Director of AoD's Office of Disability Service Innovations. AoD's mission is to equip individuals with disabilities of all ages with opportunities, tools, and supports to lead lives of their choice in their community. Its programs are working to create change and improve the lives of the estimated 61 million individuals with disabilities living in the US by advancing opportunities for inclusion and participation in the community, employment and financial well-being, and independence and self- determination. Dr. Johnson has served as the Deputy Commissioner since September 2019, with a focus on improving the quality, accountability, and evidence base of AoD's programs and initiatives. Before assuming her current role as AoD's Deputy Commissioner, Dr. Johnson served as the Deputy Director of the Administration on Intellectual and Developmental Disabilities (AIDD) from July 2015 through August 2019. Prior to her tenure at AoD, Dr. Johnson conducted policy research at The George Washington University's Graduate School of Education and Human Development and taught graduate level classes on research methods, bilingual special education, and disability policy. She has also held positions in the Arlington County Public School system, at the Council for Exceptional Children, and at the Institute for Women's Policy Research. Dr. Johnson earned her doctorate in Special Education from The George Washington University and has a Master's degree in Early Childhood Special Education from The George Washington University. She earned her Bachelor's Degree from Hollins University.
Jonathan Westin, MPA
Aging Services Programs Specialist, Office of Supportive and Caregiver Services, Administration on Aging, ACL
Jonathan Westin is a trusted health policy advisor with over two decades of experience in the areas of public policy, health strategy, and non-profit management. Jon’s principal policy focus is on aging policy trends that affect the sector’s delivery system. He has developed a strong track record in the long-term services and supports policy arena as a reliable source for the non-profit sector, government officials, and thought leaders on aging services delivery and financing reform. Over the past two decades, Jon has delivered significant value to networks of health and aging providers and has worked with appointed and elected officials on pragmatic ways to improve the nation’s health and aging delivery systems. For instance, Jon played a leading role in securing $150 million for acute, post-acute, and home and community service providers in COVID relief funds within the Coronavirus Aid Relief and Economic Security Act of 2020. Jon received his Bachelor of Arts in Political Science and his Master of Public Administration from American University in Washington, DC. For over a decade, he has been a member of the National Academy of Social Insurance which is comprised of the nation’s leading professionals on programs such as Medicare, Medicaid, and Social Security. Jon is also the past Chair of the Partnership for Medicaid, a prominent national coalition focused on improving the nation’s largest health insurance program. Jon lives in the Washington, DC area with his wife and two children.
Christina Marsack-Topolewski, Ph.D., LMSW
Associate Professor, School of Social Work, Eastern Michigan University
Dr. Marsack-Topolewski is an Associate Professor of Social Work at Eastern Michigan University. She has 20 years of experience working with disabled-people and their family caregivers. She has worked as a professor, clinical therapist, special education teacher, consultant, and speaker. She is a licensed clinical social worker, certified special education teacher, and teacher consultant in the state of Michigan. Her research has examined family caregiving, caregiver quality of life, social support, future planning, service delivery, and service utilization. Dr. Marsack-Topolewski has served as the lead principal investigator on multiple grant-funded programs tailoring services for family caregivers of disabled people. She is an appointed board member of the U.S. National Task Group (NTG) on Intellectual Disability and Dementia Practices. In 2024, she received the Ronald W. Collins Distinguished Research Award for Research Excellence, as well as the Arc of Oakland County’s Advocacy Hall of Fame Award in 2024. Dr. Marsack-Topolewski holds a Ph.D. in Social Work with a dual title in Gerontology from Wayne State University.
Elizabeth H. Morgan, Ph.D.
Interim Director and Assistant Professor in the Doctorate in Educational Leadership Program, College of Education, California State University Sacramento
Dr. Elizabeth Holliday Morgan, is a passionate educator, researcher, and advocate for disability rights and inclusion, is committed to empowering BIPOC mothers and ensuring equitable access to services for their children. Her dedication began during her tenure as a K-12 teacher and administrator. Dr. Morgan is currently an Assistant Professor at California State University Sacramento and an incoming Associate Professor in the Morgan State University in the Department of Advanced Studies, Leadership, and Policy with affiliation to the National Center for the Elimination of Educational Disparities (NCEED). She strives to amplify marginalized voices through impactful community-based applied research projects and to prepare the next generation of educational leaders and disability rights advocates. She received her Ph.D. in Human Development from the University of California, Davis and holds a Master’s in Education from the Harvard Graduate School of Education.
Family Caregivers Panel
Joe Joyce
Parent of an autistic adult; Board member, Autism Society of America; Board member, Autism Science FoundationFormer Board Chair, Autism Society of America
Joseph P. Joyce is a member of the Autism Society of America and the Immediate Past Chair. He is also Chief of Staff for Keystone Insurers Group Inc. Mr. Joyce’s 40-year career in the insurance industry includes tenure as vice president of commercial lines underwriting for W.R. Berkley Mid-Atlantic Group, and various marketing, underwriting, and management positions for the Ohio Casualty Group. Mr. Joyce graduated with a Bachelor of Arts in economics and finance from LaSalle University and received his Master of Business Administration from Penn State University. Mr. Joyce holds the CPCU and CWCA insurance designations. He is currently a member of the Board for Autism Science Foundation. Mr. Joyce and his wife, Elise, reside in Harrisburg, Pennsylvania, and have one daughter and two sons.
Vontril McLemore
Grandparent of an autistic adult
Ms. Vontril McLemore is a dedicated caregiver and advocate for special needs children. Raised in Dallas, Ms. McLemore retired from the United States Postal Service after 25 years of service. She has been married for 50 years and has two children and four grandchildren. For the past 2.5 years, she has been the primary caregiver for her special needs grandson. Together, they enjoy dining out, riding around town, and participating in various activities. Ms. McLemore is a devoted volunteer teacher at the Special Friends ministry at her local church, where she supports and engages with the special needs community. She is also an active ministry partner at The Gathering, a Womanist Church, where she reimagines classic hymns as a choir member and serves on the council of elders. A passionate advocate for marginalized people, Ms. McLemore enjoys reading banned books, writing, and shopping. Her commitment to advocacy extends to her involvement with the Texas Parent to Parent advocacy group and the Family Voices Autism Research Ambassadors Program. Additionally, she proudly holds the title of Special Olympics Grandma.
Yetta Myrick, B.A.
Parent of an autistic adult; Founder and President, DC Autism Parents
Ms. Yetta Myrick is the mother of a young adult son diagnosed with autism spectrum disorder and intellectual disability. She is the Founder and President of DC Autism Parents, a 501(c)(3) non-profit organization in the District of Columbia (DC), where she oversees daily operations and has created programs for children and youth diagnosed with autism and their families. Ms. Myrick has served as the Centers for Disease Control and Prevention's (CDC) Act Early Ambassador to Washington, DC, since 2016. She is leading the DC Act Early COVID-19 Response Team Project funded by the CDC and the Association of University Centers on Disabilities. Ms. Myrick was the Community Outreach Coordinator at the Center for Autism Spectrum Disorders (CASD) at Children's National from 2016 to 2020, where she worked with the research team to engage the local autism community. From 2013 to 2017, Ms. Myrick served as the Stakeholder Advisory Board Chair for CASD's Patient-Centered Outcome Research Institute (PCORI) Grant, "A Community-Based Executive Function Intervention for Low Income Children with ADHD and ASD Research Project". In 2019, she was appointed by DC Mayor Muriel Bowser to serve as a member of the DC Developmental Disabilities Council and is a member of the Got Transition® National Family Health Care Transition Advisory Group. Ms. Myrick holds a B.A. in Communication Studies from the Catholic University of America.
Lindsey Nebeker
Autistic adult and sibling of an autistic adult; Marketing Consultant, Independent Contractor
Ms. Lindsey Nebeker joined the IACC as a public member in 2021. Ms. Nebeker works as a freelance consultant who specializes in digital marketing and business development. She was born in Tokyo, Japan, and spent the first eleven years of her life residing there with her family. She received her autism diagnosis at age 2 from the University of California, Los Angeles (UCLA) Department of Psychiatry. Ms. Nebeker is also a sibling to an autistic adult with high-support needs. Through her family experience, she is especially focused on improving access to communication and community services and recognizing autistics and their caregivers who rely on significant support. Over the past decade, Ms. Nebeker has served on several boards and advisory panels for organizations such as the Autistic Women & Nonbinary Network, Felicity House, and the Autism NOW Center. When she is not reporting to her full-time job positions, you can find her engaged in her passions of traveling, Japanese culture, documenting her life through photography, and composing pieces on her 1909 Steinway. Ms. Nebeker holds a Bachelor of Arts degree in Music Technology (minor in Photography), and she also holds a certificate for the Partners in Policymaking Advocacy Leadership Training Program.
Nancy Richey
Parent of an autistic adult
A parent of an adult son with autism and intellectual disability, Ms. Nancy Richey has advocated for decades for equality and acceptance. She is passionate about supporting families to envision everyday lives and encouraging others to share in and communicate that collective vision. Ms. Richey also brings professional experience as Pennsylvania’s first statewide facilitator of the Supporting Families Initiative from 2015 to 2018. Working within the Policy Bureau of the Office of Developmental Programs, she contributed the family perspective in policy creation and operations. She led Pennsylvania’s participation in the national Community of Practice of Supporting Families Throughout the Lifespan. Unique to the approach was the creation of Regional Collaboratives intended to empower and reflect local communities in creating new and meaningful ways to support families. Ms. Richey is currently serving on the RAISE Family Caregiver Advisory Council led by ACL. She is a past chair of the PA Developmental Disabilities Council. Earlier in her career, she was a leader in the PA Training Partnership for People with Disabilities and their Families. Her other professional experiences have included human services, community organization, and writing. She is a native of Williamsport, PA, and an honors graduate of Lycoming College.
Materials
- Submitted Written Testimony – Joe Joyce
- Resources for Family Caregivers from the Administration for Community Living (ACL)
- 2022 National Strategy to Support Family Caregivers
- Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act Advisory Council
- Support to Caregivers Resource Page
- ACL Announces Nearly $2 Million To Support State Implementation of the National Strategy to Support Family Caregivers
- The National Caregiver Champion Collaborative Opens Registration
- Experiences of Parental Caregivers of Adults with Autism
- Hines M, Balandin S, Togher L. The stories of older parents of adult sons and daughters with autism: a balancing act. J Appl Res Intellect Disabil. 2014 Mar;27(2):163-73. doi: 10.1111/jar.12063. Epub 2013 Jun 17. PMID: 23775710.
- Hines M, Balandin S, Togher L. Buried by autism: older parents' perceptions of autism. Autism. 2012 Jan;16(1):15-26. doi: 10.1177/1362361311416678. Epub 2011 Aug 16. PMID: 21846666.
- Ljungberg M, Schön UK. Who cares? A scoping review about the experiences of parental caregivers of autistic adults. J Appl Res Intellect Disabil. 2023 Sep;36(5):929-939. doi: 10.1111/jar.13126. Epub 2023 Jun 2. PMID: 37264729.
- Marsack-Topolewski CN, Samuel PS. Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment. J Autism Dev Disord. 2024 May 20. doi: 10.1007/s10803-024-06381-8. Epub ahead of print. PMID: 38764071.
- Marsack-Topolewski, CN. Fathers of Adult Children with Autism: Examination of Caregiver Burden, Social Support, and Quality of Life. J Child Fam Stud. 2023 Sep 15;32, 3515–3525. doi: 10.1007/s10826-023-02673-2
- Marsack-Topolewski CN, Perry TE, Chan KT. “I’m Glad She Chose Me as Her Parent”: Rewards of Caregiving for Adults With Autism. Family Relations: Interdisciplinary Journal of Applied Family Science. 2021 Dec;70(5):1465-1476. doi: 10.1111/fare.12515.
- Marsack-Topolewski CN. Receipt of Social Support among Compound and Noncompound Caregivers of Adults with Autism. J Gerontol Soc Work. 2021 Mar;64(2):175-189. doi: 10.1080/01634372.2020.1834045. Epub 2020 Oct 13. PMID: 33048663.
- Marsack-Topolewski CN, Samuel PS, Tarraf W. Empirical evaluation of the association between daily living skills of adults with autism and parental caregiver burden. PLoS One. 2021 Jan 5;16(1):e0244844. doi: 10.1371/journal.pone.0244844. PMID: 33400706; PMCID: PMC7785247.
- Marsack-Topolewski CN. A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism. J Autism Dev Disord. 2020 Apr;50(4):1111-1122. doi: 10.1007/s10803-019-04285-6. PMID: 31848797.
- Marsack-Topolewsk CN, Weisz AN. Parents’ Perceptions of Access to Services for Their Adult Children Diagnosed With Autism Spectrum Disorder. Families in Society: The Journal of Contemporary Social Services. 2020 Jan 2;101(2):190-204. doi: 10.1177/1044389419881273.
- Marsack-Topolewski CN, Graves JM. “I worry about his future!” challenges to future planning for adult children with ASD. Journal of Family Social Work. 2019 Feb 21;23(1):71–85. doi:10.1080/10522158.2019.1578714.
- Marsack CN, Perry TE. Aging in Place in Every Community: Social Exclusion Experiences of Parents of Adult children With Autism Spectrum Disorder. Res Aging. Jul;40(6):535-557. doi: 10.1177/0164027517717044. Epub 2017 Jul 5. PMID: 28677419; PMCID: PMC6345512.
- Oti-Boadi M, Oppong Asante K, Malm EK. The Experiences of Ageing Parents of Young Adults with Autism Spectrum Disorders (ASD). J Adult Dev. 2 Jan 2019;27: 58–69. doi: 10.1007/s10804-018-09325-6.
- Shattuck PT, Garfield T, Roux AM, Rast JE, Anderson K, Hassrick EM, Kuo A. Services for Adults With Autism Spectrum Disorder: a Systems Perspective. Curr Psychiatry Rep. 2020 Feb 5;22(3):13. doi: 10.1007/s11920-020-1136-7. PMID: 32026004; PMCID: PMC7002329.
- Wilson KP, Kaminski-Mainardi A, Tenbus J, Marsack-Topolewski CN. Social communication supports and services for adults with ASD: parents’ perceptions of barriers and needs. Journal of Family Social Work. 2021 Mar 4; 24(2):98-117, doi: 10.1080/10522158.2021.1887037.
- Additional Caregiver Resources
- Autism Society
- Autism Speaks
- Administration for Children and Families
- Federal Emergency Management Agency
- Autism Society
Slides
Public Comments
Transcript
