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Leading Change Session

Stronger Together: Strategies, Opportunities, and Challenges for Inclusive Research

Tuesday, November 5, 2024

8:30 am - 10:00 am

Ballroom Level: Potomac 1

Collaborations in research are critical to advancing rights and opportunities for and with people with disabilities. To advance research that is truly meaningful, however, goes beyond the notion of ‘inclusion,’ and must take into consideration all facets of inclusive research from concept to practice. We invite you to join us in this transformative Leading Change Session to hear the unique perspectives from leading researchers within and beyond the AUCD Network.

The panelists, representing a variety of professional backgrounds and lived experiences, will share their stories and lessons learned from academic-community partnerships, highlight the value of people with disabilities who are researchers, and underscore how change requires a change in the full conversation concerning inclusive research. They will also explore the challenges in the research process and outcomes that are influenced by the academic ecosystem, and offer insight into strategies and opportunities to overcome barriers in inclusive research.

Key Topics: 

  • Academic-community partnerships
  • Inclusive research concept-to-practice
  • People with disabilities as researchers, People with disabilities as co-researchers
  • Significance of feedback and advocacy to inform research
  • Tools for inclusive research and accessibility
  • Stories of success, challenges, and solutions
  • Academic value system and its impact on priorities
  • ‘Readiness’ of researchers and funders

Meetings & Sessions

Presenters

Katherine McDonald

Panelist
Falk College of Sport and Human Dynamics

Professor Katherine (Katie) McDonald is a Senior Associate Dean of Research and Administration and Professor of Public Health in the Falk College of Sport and Human Dynamics. Professor McDonald received a B.S. with Distinction in Human Development and Family Studies with a minor in French from Cornell University and a Ph.D. in Community and Prevention Research Psychology with a minor in Statistics, Methods and Measurements from the University of Illinois at Chicago. Professor McDonald is a Fellow of the American Association on Intellectual and Developmental Disabilities, Chair of Syracuse University’s Institutional Review Board (IRB), and member of the Editorial Board for Autism in Adulthood. Professor McDonald previously lived in community with individuals with and without intellectual disability, and conducts research in partnership with people with disabilities on disparities. https://falk.syr.edu/people/mcdonald-katherine/

Larissa Minner

Panelist
University of Texas at Austin (UT)

Larissa Minner (she/they), an ACT LEND alumnna of the University of Texas at Austin (UT), is a passionate advocate, speaker, researcher, and thought leader in the field of neurodevelopmental disabilities and related differences. With a focus on fostering accessible, neuro-affirming environments, Larissa is dedicated to reducing systemic discrimination and health inequity for individuals with disabilities. Larissa serves as the principal investigator of her SHAPE in Healthcare Study at UT, focusing on accessible and person-centered healthcare environments. Larissa also co-developed and leads the Weaving Inclusion Together in research Hub (W.I.T.H.) at UT Texas Center For Disability Studies, a research advisory committee comprised of adults with DD and family members of individuals with DD. Through their extensive experience as a trainer, consultant, and researcher, Larissa empowers organizations and communities to create inclusive spaces and cultivate understanding and acceptance of neurodivergent individuals.

Bonnielin Swenor

Panelist
Johns Hopkins Disability Health Research Center

Bonnielin Swenor is the Endowed Professor of Disability Health and Justice at Johns Hopkins University with joint appointments at the Johns Hopkins Schools of Medicine, Nursing, and Bloomberg School of Public Health. She is the founder and director of the Johns Hopkins Disability Health Research Center, which uses data-driven approaches to shift the paradigm from ‘living with a disability’ to ‘thriving with a disability’. Motivated by her personal experience with disability, her work is focused on advancing equity for people with disabilities, promoting disability inclusion and accessibility, and developing evidence-based and disability-inclusive policies, with a focus on STEM settings. Dr. Swenor is an internationally recognized expert on disability data and has provided advice and expertise to multiple organizations and agencies, including the World Health Organization, White House Office of Science and Technology Policy, the National Academy of Science, Engineering, and Medicine, the National Institutes of Health, and the National Governors Association. Her work has been published in leading academic journals, such as the New England Journal of Medicine (NEJM), The Journal of the American Medical Association (JAMA), and the Lancet, and has been featured in multiple news outlets, including the New York Times, the Washington Post, and TIME magazine. Dr. Swenor also has a track record of translating research into policy change, as she played a pivotal role in national advocacy that led the NIH to designate people with disabilities as a health disparity population.

Bradley Schlaggar

Moderator
Kennedy Krieger Institute

Dr. Bradley Schlaggar is the president and CEO of Kennedy Krieger Institute and holds the Zanvyl Krieger Faculty Endowed Chair at Kennedy Krieger. He is also a professor of neurology and pediatrics at the Johns Hopkins University School of Medicine. At the Institute, Dr. Schlaggar leads a team of more than 3,000 faculty and staff members to advance the organization's longstanding mission of improving the lives of children, adolescents and young adults with disorders and injuries of the developing nervous system through clinical care, research, education, community partnership, advocacy, and training.