Research with the Experts Webinar

Findings from Co-researchers with Intellectual and Developmental Disabilities and the Importance of Inclusion on Research Teams 

Our webinar was held on Tuesday, March 21st, 2023. Congratulations to our wonderful presenters!

Watch the full video by clicking below.

Please use captions as the video recorded captions are not correct. 


For research to be comprehensive and truly reflective of populations, it is important to incorporate the perspectives of those with lived experience. Inclusion of those with lived experience values and respects the worth of the individual. Co-research is a method of inclusive participatory action research in which the co-researcher is intentionally involved in every step of the research process. From designing the research questions, data collection, analysis, and dissemination, co-researchers are co-contributors that engage in research. Inclusion of people with and without disabilities on research teams fosters genuine and equitable collaboration between researchers and co-researchers.

Our webinar invites you to learn about co-research through presentations from self-advocates, a panel discussion with principal investigators discussing the importance of inclusion on research teams, concluding with keynote speaker, Mallory Cyr, the program manager of Children and Youth with Special Health Care Needs.  


Webinar Presentations

Co-researcher Presentations: Learn about research projects with and about people with intellectual and developmental disabilities from co-researchers.

University of Florida– The Youth & Young Adult Empowerment Leadership and Learning (YELL) lab is developing an accessible score report for a self-reported measure of functional skills that support transition to adulthood. Learn more here.

Funding Source: National Center Medical Rehabilitation Research, National Institute of Child Health and Human Development / National Institute Neurological Disorders and Stroke, National Institutes of Health (K12 HD055931, R42HD090772) and the Center for Translation of Rehabilitation Engineering Advances and Technology (TREAT; R24HD065703 and P2CHD086841).

UF YELL Lab Co-researcher team: Bianka Camcho, Cyril Nonga-Mann, and Elijah Thomas with support from PhD candidate Fiorella Guerrero and Jessica Kramer, PhD, OTR/L

Waisman Center, University of Wisconsin-MadisonThey are currently co-researchers on a project that focuses on the experiences of people with IDD during the pandemic and non-profit organizations that support them. They are also delivering the READI (Research Engagement for Diverse Individuals) curriculum with other team members.  Learn more here.         

Funding Source: Wisconsin Partnership Program’s COVID-19 Response Research and Education Grant Program, through the Partnership Education and Research Committee

Co-Researchers Marquis Garner and Edward Kastern with the Ausderau Lab, Waisman Center, University of Wisconsin-Madison

Massachusetts General Hospital Institute of Health Professions – The Partnership Lab at MGH is a group of researchers with and without disabilities that are focused on health, inclusion, and participation for adults with intellectual and/or developmental disabilities. One of the projects in the Partnership lab involves interviewing people with developmental or intellectual disabilities to learn how to make surveys easy to use for people with disabilities. Learn more here.

This study is funded by a Switzer Fellowship, provided to Ariel Schwartz by the National Institute on Disability, Independent Living, and Rehabilitation Research (#90SFGE0031-01-00)

Co-Researchers Brendan Durkin and Jacob Myer with the MGH Partnership Lab

Boston University School of Public Health- The DSTOTHEMAX Co-Research team at the Boston University School of Public Health has six adult co-researchers with Down syndrome that use their knowledge to engage with the research process. The team currently co-leads a project about mental health and Down syndrome and launched a survey about stress and anxiety in people with Down syndrome. Learn more here.

Project funding: National Institute on Aging, National Institutes of Health grant (1R01AG073179-01).

Co-Researchers Eden Rapp and Kaethe Sigelko with the Boston University School of Public Health

Panelist Discussion: Researchers discussed the importance of inclusion in research, what the process for implementing a co-research team was like, and the challenges and successes. 

Eric Rubenstein, PhD 

Associate Professor of Epidemiology

Department of Epidemiology 

Boston University School of Public Health 

 

Karla Ausderau, PhD 

Associate Professor of Kinesiology

Waisman Center, University of Wisconsin-Madison 

 

 

Jessica Kramer, PhD, OTR/L 

Registered/Licensed Occupational Therapist University of Florida College of Public Health and Health Professions, Department of Occupational Therapy

 

Ariel Schwartz, PhD, OTR/L 

Assistant Professor, Occupational Therapy

Massachusetts General Hospital Institute of Health Professions

 

 


Keynote Speaker:  Mallory Cyr is the Director of Children and Youth with Special Health Care Needs (CYSHCN) and presented on disability justice and equity, the ADA and accessibility, and ableism in public health.  

Mallory Cyr, MPH 

Program Manager with the Association of Maternal and Child Health Programs (AMCHP)

Mallory strives to create leadership, self-advocacy, and empowerment among people with and without rare diseases and disabilities in her over 14 years of experience. Her work involves supporting AMCHP’s State Public Health Autism Resource Center, leading the Autism Community of Learners, and supporting the needs of the needs of the CYSHCN workforce through the Public Health Emergency Preparedness project, the Leadership Institute for CYSHCN Directors, and expansion of the National Standards.

Mallory is incredibly passionate about improving opportunities for meaningful youth engagement, leveraging social media for stakeholder engagement, and applying personal lessons learned to her work from her lived experience navigating systems for CYSHCN in multiple states. Learn more about her work on here https://amchp.org/staff/mallory-cyr-mph/