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Abstract

Participatory action research (PAR), or the inclusion of those affected by the issues being studied, is a growing area of emphasis in disability research. The principles of PAR align with those of the disability rights movement, such that full inclusion and “nothing about us without us” extends as much to research as it does to any other area of life. Moreover, PAR allows for meaningful input from people with intellectual and developmental disabilities (I/DD), which enhances the likelihood that research results are relevant and important to the disability community. As research activity resumes and is adapted to the context of a global pandemic, it is crucial that a balance is struck to optimize the safety of individuals with I/DD without taking steps backwards from the progress towards more meaningful inclusion in research. Lessons learned from past participatory research projects have demonstrated that accommodations to enable equitable participation of individuals with IDD in the research process are crucial. COVID-19 has significantly affected the lives of individuals with I/DD directly; however, COVID-19 has also affected those with I/DD indirectly through the disruption to critical intervention and other clinical research. As research processes are adapted to align with COVID-19 guidelines, the inclusion of individuals with I/DD via PAR needs to be adapted as well. Recommendations for the continuation of PAR in the context of COVID-19 will be discussed as well as ways in which accommodations can be modified to this new context.

Plain Language Summary

Participatory action research, or PAR, includes people with disabilities on the research team. All team members are researchers. Researchers have changed the way they do work to keep people safe from COVID-19. This is important for people with disabilities because COVID-19 is dangerous. There are still many ways for research team members to work together and learn to trust each other. This article shares some ideas for including researchers with disabilities. We can find more ways for researchers to be a part of the team. We can ask people how they like to share their ideas. We can practice sharing ideas in different ways. And we can use small groups to get things done. “Nothing about us without us” is also a goal of research. There are many ways to include people with disabilities in research. We are learning new ways to stay safe and get work done during the COVID-19 pandemic.

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