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

AUCD 2021 Tuesday Leading Change Plenaries

October 19, 2021

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 Russel 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.