IACC Full Committee Meeting (Hybrid)
Full Meeting Video
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Event Information
| Topic | Topic Description |
|---|---|
| Date: | Wednesday, April 17, 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 |
| Virtual Access: | This will be a hybrid event and also accessible to the public virtually through NIH VideoCast. If you experience technical problems, please e-mail IACCPublicInquiries@mail.nih.gov. |
| Registration: | Pre-registration is recommended. Register now. |
| 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 IACC meeting is Wednesday, April 3, 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. | |||||||||||
| 10:15 | |||||||||||
| 10:25 | |||||||||||
| 11:10 |
Break
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| 11:25 | |||||||||||
| 11:35 | |||||||||||
| 12:30 p.m. | |||||||||||
| 12:40 |
Lunch Break
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| 1:30 |
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| 2:00 |
Break
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| 2:15 |
Planned Collaboratively by the U.S. Office of National Autism Coordination/NIMH/NIH and the Autism Alliance of Canada
Presentation Session: Global Autism Leadership Through Advocacy and Government
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| 4:55 |
Schedule is subject to change. For more information on upcoming events, please see https://iacc.hhs.gov/meetings/iacc-meetings/
Next IACC Full Committee Meeting:
Wednesday, July 10, 2024, 10:00 a.m. – 5:00 p.m. (Hybrid)
Minutes
Speakers
Chiara Servili, M.D., M.P.H., Ph.D.
Technical Officer, Department of Mental Health and Substance Use, World Health Organization
Dr. Chiara Servili is a technical officer in the WHO Department of Mental Health and Substance Use. She is a child neuropsychiatrist by training. Dr. Servili is acting as a technical focal point for the UNICEF and WHO Joint Programme on mental health and psychosocial wellbeing and development of children and adolescents. Her work focused on the development of guidance and implementation tools for child and adolescent mental health promotion and protection and providing technical advice to countries. Prior to joining WHO Headquarters in 2010, she served the organization in the African and Eastern Mediterranean regions. Dr. Servili obtained an M.P.H. at the London School of Hygiene and Tropical Medicine and a Ph.D. at the Universita of Modena.
Leonardo Cubillos, M.D., M.P.H.
Director, Center for Global Mental Health Research, NIMH
Dr. Leo Cubillos is the Director of the Center for Global Mental Health Research at the NIMH. He is responsible for formulating, planning, directing, and evaluating broad NIH-wide or trans-Institute program objectives, policies, and activities for a portfolio of research programs and other grants/awards, cooperative agreements, and/or contracts, including the discovery, development and evaluation of scientific areas critical for eventual prevention and therapeutic strategies. He previously worked as a senior health specialist at the World Bank in Latin America, India and Africa focusing on health insurance, results-based financing, and human rights. During his tenure at the Ministry of Health of Colombia, Dr. Cubillos was National Director-General of Health Insurance and acting Vice-Minister of Health. Dr. Cubillos completed his psychiatric residency and fellowship in addiction psychiatry at Dartmouth-Hitchcock Medical Center. He is clinically active in the United States where he works with adults with comorbid mental health and substance disorders.
Andy Shih, Ph.D.
Chief Science Officer, Autism Speaks
Dr. Andy Shih joined Autism Speaks in 2006, after its merger with the National Alliance for Autism Research where he served as chief science officer. Dr. Shih has held various leadership roles in the organization throughout his tenure including senior vice president of public health and inclusion. In his current role of chief science officer, Dr. Shih is responsible for the science portfolio, including grantmaking, the MSSNG genomic research project and the Autism Care Network. Since joining Autism Speaks, Dr. Shih has led important advancements toward the organization’s mission, including the development of several large international research consortia that delivered high impact scientific outcomes for the community. He was central to the 2008 passage of the World Autism Awareness Day resolution at the United Nations (UN) and subsequently led the development of the Global Autism Public Health (GAPH) initiative that provides technical support to country governments to enhance autism awareness, advocacy, research and services worldwide. Under Dr. Shih’s leadership, Autism Speaks supports ministries, government agencies and leading nongovernmental organizations in more than 70 countries to deliver better outcomes and quality of life for tens of millions of individuals and families. Dr. Shih holds a Ph.D. in molecular cell biology from New York University School of Medicine. His research background includes published studies in gene identification and characterization, virus-cell interaction and cell-cycle regulation.
Pru McPherson, LL.B.
Director, Autism Policy Section, Department of Social Services, Australian Government
Ms. Pru McPherson is the Director of the Autism Policy Section in the Australian Government Department of Social Services and leads the team developing Australia’s first National Autism Strategy. Ms. McPherson oversees the planning, policy, communications, and stakeholder engagement activities for the National Autism Strategy. Ms. McPherson has previously held positions advancing social policy, including relating to reducing violence against women and their children, harm reduction in online gambling, building community cohesion, and reducing harm caused to victims of crime and victims of sexual assault. Ms. McPherson received her Bachelor of Laws from the University of Canberra and Graduate Diploma in Legal Practice from the Australian National University.
Mark Nafekh
Director General, Centre for Health Promotion, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada
Menan Abdelmaksood Rabie, M.D.
General Director of Hospitals, General Secretariat for Mental Health and Addiction Treatment, Ministry of Health and Population of the Government of Egypt
Professor Menan Abdelmaksood Rabie, is the current Secretary General of Mental Health and Addiction Treatment-Ministry of Health and Population in Egypt, she persuaded her career in public governmental services years ago as the Deputy Chair of the Research Unit in the General Secretariat of Mental Health and Addiction Treatment. She is a Professor of Psychiatry in Ain Shams University, as well as an active member in a number of Psychiatric institutions where she acts as an Associate Member of The International Federation of Psychiatric Epidemiology (IFPE), International Member of the American Psychiatric Association APA and Member of the editorial board of the journal of Middle East Current Psychiatry. Professor Menean also won a number of awards along her career as Okasha’s Award for the Year 2011 and MECPsych acknowledgement of Effort and Participation, The Journal of Middle East Current Psychiatry. As well as she was an author for a number of scientific publications in different international journals since 2005.
Karen D. Bopp, Ph.D.
Co-Chair, Autism Alliance of Canada Board of Directors
Karen has worked extensively in the disability sector in British Columbia for over 28 years. She started her career as a Speech-Language Pathologist and a Program Director at a Child Development Centre. She then went on the complete a PhD in Special Education and then an interdisciplinary post-doctoral Fellowship at the University of BC (UBC). Karen is currently the Executive Advisor for children and youth with disabilities for the Office of the Representative for Children and Youth of BC and an Adjunct Professor at The Centre for Interdisciplinary Research and Collaboration in Autism (CIRCA), UBC. Before this, Karen worked for the Ministry of Children and Family Development (MCFD) in Children and Youth with Support Needs (CYSN) Policy for 10 years before becoming the Director of Autism Information Services BC in 2017. From March 2018 to January 2023, Karen was then seconded from MCFD to UBC as the Director of Provincial Outreach at CIRCA where she created four continuing professional development programs for service providers in the fields of medicine; dentistry; employment; and childcare to improve access to effective, evidence-based services and promote accessibility, acceptance and inclusion for all neurodivergent individuals and their families.
James Cusack, Ph.D.
Chief Executive, Autistica
Dr. James Cusack is the Chief Executive of Autistica, the leading autism research and campaigning charity in the United Kingdom. He previously served as Autistica’s Director of Science, where he was responsible for the organization’s research strategy and program. In his time at Autistica, Dr. Cusack has established autism and autism research as national priorities, supported research programs that can address the shocking inequalities that autistic people face, and most recently unveiled ambitious goals that aim to transform the future of autistic people by 2030. Before joining Autistica, he had a successful career working in autism research and worked directly with autistic people. Dr. Cusack received his Ph.D. in biological motion perception in autism from the University of Aberdeen. Dr. Cusack received his autism diagnosis in childhood.
Gauri Divan, M.D.
Developmental Pediatrician, Director, Child Development Group, Sangath
Dr. Gauri Divan is a developmental pediatrician and is the Director of the Child Development Group in Sangath, a non-governmental organization in India. She works in the areas of early child development, childhood developmental disabilities, and adolescent health. Her current work investigates whether non-specialists can be taught to deliver complex interventions through task-sharing. She is also working on a mobile health platform to support families of children with developmental disabilities. Dr. Divan is also leading an early child development trial in Haryana aiming to evaluate an intervention targeting care in pregnancy, infant feeding and nutrition, and early child stimulation designed around the WHO-UNCIEF Care for Child Development Package. Additionally, she is part of Rashtriya Bal Swasthya Karyakram (RBSK), launched by the Government of India’s Ministry of Health & Family Welfare under the National Health Mission, which aims to improve the overall quality of life of children enabling all children achieve their full potential and provide comprehensive care to all the children in the community. Dr. Divan is also part of the WHO’s consultative group on autism spectrum disorder and other developmental disabilities.
Liliana Mayo, Ph.D.
Founder and General Director, Centro Ann Sullivan del Perú
Dr. Liliana Mayo founded Centro Ann Sullivan del Perú (CASP) in 1979 in the garage of her parents' house because she saw the need to provide education to people with different abilities and their families. CASP works to enable people with developmental disabilities to live independent, productive, and happy lives in their community. Dr. Mayo has taught at the University of Kansas, the Universidad Peruana Cayetano Heredia, and the Universidad Católica del Perú. She has lectured worldwide and received numerous awards, including the Reina Sofía Prize of Spain for Rehabilitation and Integration, the Prize for the International Dissemination of Applied Behavioral Analysis, and the El Sol del Perú Order, in the rank of Commander. Dr. Mayo received a B.A. in Psychology from the Universidad Nacional Mayor de San Marcos, Peru. She received her M.A. and Ph.D. in Human Development and Family Life from the University of Kansas in the United States.
Amina Abubakar, Ph.D.
Director, Professor, Institute for Human Development, Aga Khan University
Dr. Amina Abubakar is a professor and Director for the Institute for Human Development at Aga Khan University (AKU) in Kenya. She is also a Senior Research Scientist at the Kenya Medical Research Institute/Wellcome Trust Research Programme and Visiting Academic at the University of Oxford, Department of Psychiatry. She is a trained Developmental Psychologist with more than 18 years research experience working in rural settings in Kenya within multidisciplinary teams. Her research interests lie in a) quantifying the neurocognitive burden of early childhood diseases; b) developing culturally appropriate psychological measures for use in sub-Saharan Africa (SSA); and c) identifying culturally appropriate intervention strategies for at-risk children in SSA. She has more than 18 years of experience in developing assessment tools and describing the neurocognitive and mental health outcomes for children exposed to multiple risk factors. The neurodevelopmental tools and measures that she contributed to developing have been used in more than 25 low- and middle-income countries. She has received prestigious awards for her work, such as the MRC/DfiD African Research Leader Fellowship and the Royal Society Pfizer Award. She has served on technical working groups, forums and consulted for various international organizations including the World Health Organization (WHO); National Academies of Sciences, Engineering and Medicine; Firelight Foundation; Save the Children; Autism Speaks; and Open Society. She has been actively involved in capacity building for African scientists and has supervised Ph.D. students from Kenya, South Africa, Tanzania, and Zambia.
Clare Gibellini
Co-Chair, Australian National Autism Strategy Oversight Council
Ms. Clare Gibellini (she/her) is woman with multiple disabilities, including Autism, working as a passionate advocate for the inclusion of people with a disability in all areas of the community. She is the Co-Chair of the Oversight Council for the Australian Federal Government’s first National Autism Strategy, and a member of the National Disability Insurance Agency Independent Advisory Council’s Equity and Inclusion Reference Group. She is also the Deputy Chair for the WA Ministerial Advisory Council on Disability. Ms. Gibellini currently works as Policy Officer for Women With Disabilities Australia, and is a Lived Experience Co-Researcher with the University of Sydney, specialising in Disability Inclusive Disaster Risk Reduction. She is also an emergency services volunteer with the Department of Fire and Emergency Services (WA) and spends time working with various communities to build community preparedness. Ms. Gibellini serves on multiple boards and steering committees focussed on improving outcomes for people with disability, and is a passionate human rights campaigner both in Australia and internationally. She was a delegate to the United Nations in 2022 and 2023 as part of the Australian delegation to the Conference of State Parties.
Materials
- Study on Prevalence of Neurodevelopmental Disabilities in India
- Study on Unmet Needs of Autistic Children and Their Families in India
- Communication-centered Parent-mediated treatment for Autism Spectrum Disorder in South Asian (COMPASS) trial and website
- Experiences of Autistic Children and Their Families During the COVID-19 Pandemic in India
- Neurodevelopment and Autism in South Asia: Treatment and Evidence
Slides
Public Comments
Transcript
