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AUCD - Tuesday Leading Change Plenaries

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Tuesday, November 16, 2021 12:00 PM - 1:15 PM

Location: Virtual

Session Description

Conscious Collaborations for Equitable Research

In this interactive session, a panel of leaders will share their experiences and perspectives regarding equity in research. They will discuss what equity in research means and looks like throughout the lifecycle of a research project from conception through implementation to dissemination. Panelists will explore with one another the who, what, when, where and how of meaningfully involving diverse individuals and partnering with diverse communities throughout the process of scientific discovery.


Dr. Rodney Samaco is the Associate Director of the BCM Intellectual and Developmental Disabilities Research Center (IDDRC), Director of the BCM IDDRC and Texas Children's Hospital (TCH) Neurobehavioral Core Facilities, and am the Academic Lead for the behavioral phenotyping component of BCM's Knock Out Mouse Project, an NIH Common Fund Research Program contributing to the International Mouse Phenotyping Consortium's overall goal to create and characterize a null allele of every protein-coding gene of the mouse. Through these endeavors and his current research program, Dr. Samaco is actively engaged in fostering collaborations with academic, non-profit and industry partners to conduct large-scale rodent behavioral evaluations and preclinical studies.



Karen Ward has been the Director of the University of Alaska Anchorage's Center for Human Development, a University Center for Excellence in Developmental Disabilities since 1994. She is also the Director of the Alaska's Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Karen has over 35 years of experience as an educator, practitioner, and researcher in the field of disabilities, with numerous published articles. Her research has focused on violence presentation and healthy relationships for people with intellectual and developmental disabilities.



Dr. Douglene Jackson is an assistant professor of clinical pediatrics and associate director of community engagement at the University of Miami Mailman Center for Child Development (MCCD). She has been a part of the MCCD family since 2014, working with various programs, including the Interdisciplinary Developmental Evaluation Team (IDES), engaging in research, and serving as the occupational therapy discipline leader for the LEND training program. Dr. Jackson is an occupational therapist with over 20 years of experience in the rehabilitation field, primarily working with individuals with neurodevelopmental disabilities across the lifespan in schools, hospitals, clinics, and community-based settings. She holds a Ph.D. in special education in early childhood, master of occupational therapy, bachelor of health science in rehabilitation services with a concentration in counseling, and professional certifications in various fields including assistive technology, telehealth, autism, sensory integration, feeding, and health and wellness. Dr. Jackson has served in leadership roles with various professional associations and organizations. She has worked in academia and is an experienced researcher, with interests in health and education equity, early childhood, autism, telehealth, and assistive technology.

Sandy Magaña, PhD, MSW, holds the Professorship in Autism and Neurodevelopmental Disabilities in the Steve Hicks School of Social Work. She received a Master of Social Work from California State University, San Bernardino and her Ph.D. from the Heller Graduate School of Social Policy at Brandeis University. Magaña completed post-doctoral training from the NICHD funded Post Doctoral Program in Developmental Disabilities Research at the Waisman Center, University of Wisconsin-Madison. She was a faculty member in the UW-Madison School of Social Work for 12 years and later served as a Professor at the Department of Disability and Human Development at the University of Illinois at Chicago. At UIC, Magana was awarded a center grant from The National Institute on Disability Independent Living, and Rehabilitation Research (NIDILRR) and founded the Family Support Research and Training Center (FSRTC) which she continues to co-direct from UT SSW. The FSRTC aims to expand the research on family members who provide support and care to people with disabilities across the life course.

Dr. TC Waisman is the design lead for the Autism Training Academy which offers asynchronous online courses on autism and neurodiversity. She is the co-founder of the Autism Researchers Committee for the International Society for Autism Research, founding editorial board member of the Autism in Adulthood journal, and a board member of the Autistic Researchers Review Board for the Autism Intervention Research Network for Physical Health. She is currently co-leading research with Dr. Kristen Gillespie-Lynch on autism and Universal Design training for faculty. Dr. TC Waisman was diagnosed as Autistic at 48-years-old.



Do You See Me? Impact of Missing Disability Data on Research and Public Health

Join this dynamic session as we explore disability data, gaps in data and collection, and the impact of missing disability data on current research and public health efforts. Examples from state health departments, universities, and community partners will be reviewed as we share challenges and opportunities for research and the disability community. Insights into the lack of data in public health programs, its impact and how this is changing will be shared. We will explore policy levers to support disability data to enhance full inclusion and meaningful lives for all.


Kara Ayers, PhD, is the Associate Director and an Assistant Professor at the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD). She is Director of the Center for Dignity in Healthcare for People with Disabilities and also a co-founder of the Disabled Parenting Project. Dr. Ayers' interests include disability identity/culture, healthcare equity, bioethics, community inclusion, and the use of media to teach, empower, and reduce stigma. She serves on multiple task forces and national and state coalitions related to improving outcomes for people with disabilities and infuses the mantra, "Nothing about us without us," into all of her scholarly and community-based pursuits.




Dr. Monika Mitra  is the Nancy Lurie Marks Associate Professor of Disability Policy, and Director of the Lurie Institute for Disability Policy at Brandeis University's Heller School for Social Policy and Management. Her research focuses on the health and wellbeing of people with disabilities and their families. She co-leads the Community Living Policy Center which is aimed at improving policies and practices that advance community living outcomes for people with disabilities and the National Research Center for Parents with Disabilities which is focused on addressing knowledge gaps regarding the needs of parents with diverse disabilities and their families. Dr. Mitra is co-Editor-in-Chief of the Disability and Health Journal and the 2017 recipient of the Allan Meyers Award from the American Public Health Association Disability Section. Prior to joining Brandeis, she was Associate Professor in the Department of Family Medicine and Community Health at the University of Massachusetts Medical School. She received her PhD and MA from Boston University, and her MS from Calcutta University, Kolkata, India.

Bryan Russell is the Emergency Management Coordinator with Disability Rights Florida where he works to ensure the needs of persons with disabilities and their caregivers are included in emergency planning and response efforts across the state. Prior to this role, Bryan was the Program Manager for the Florida Department of Health's Disability and Health Program where he focused on adapting and implementing public health interventions for persons with disabilities. During emergencies and disasters, Bryan serves as the State Access Coordinator with the Florida State Emergency Response Team providing guidance and recommendations to ensure the needs of persons with access and functional needs are met during all phases of disasters. Prior to joining the team in 2016, Bryan managed the Disability Employment Initiative with CareerSource Gulf Coast in Panama City and other public health programs at the Bay County Health Department.

Nassira Nicola, MA, ADAC
, is the Health and Disability Program Coordinator for the Office of Health Equity in the Massachusetts Department of Public Health (MDPH). In this capacity, she works to promote the health and well-being of people with disabilities in the Commonwealth and eliminate health inequities by transforming public-health systems and sharing power with the disability community. Her efforts include providing training and technical assistance to public-health programs to build their capacity to partner with individuals with disabilities in their work, whether it be data collection, communications, policy development, or direct services. She works extensively with cross-department initiatives such as the Data Collection Standards Steering Committee (including the SOGI and Disability Data Standards development teams); the Massachusetts Pregnancy Risk Assessment Monitoring System (PRAMS) Advisory Committee, the Racial Equity Team of the Office of Population Health, and the MDPH Disability Working Group. Prior to joining MDPH, Ms. Nicola worked for many years at the Boston Center for Independent Living, a disabled-person-led civil rights and direct services organization. She holds an MA in linguistics from the University of Chicago (focusing on the language and culture of the Deaf community in Montreal) and an ADA Coordinator Certification from the Great Plains ADA Center.