LAWRENCE — The University of Kansas has secured a grant to expand work on creating career pathways in research for people with intellectual and developmental disabilities.
The research team at the Kansas University Center on Disabilities (KUCD) will expand its Inclusive Research Learning Series, engaging with people with intellectual and developmental disabilities and other universities and research teams to ensure research is driven by the values of people with disabilities. The project will test and expand tools to support people with intellectual and developmental disabilities in planning, conducting and disseminating research as co-equal partners on disability research teams.
The National Institute on Disability, Independent Living and Rehabilitation Research has chosen KUCD in KU’s Life Span Institute for a three-year, $750,000 grant to test, explore and adaptively develop inclusive research practices. Traditionally, research in disability has not included people with disabilities as members of research teams. KUCD has worked to change that by advancing inclusive research, in which people with lived experiences are employed and part of the entire research process, striving to make this the industry standard.
“Such practices result in better research by including the voices of individuals the work is designed to serve, and it also helps create careers in the research field for the community,” said Karrie Shogren, KUCD director, Ross and Marianna Beach Distinguished Professor in Special Education at KU and the project’s principal investigator.
“This project will build on and expand work we’ve established here at KUCD in partnership with the intellectual and developmental disability community. The main focus will be to take tools we’ve developed, like the Inclusive Research Learning Series, and expand their reach to create more employment opportunities for people with lived experience in more settings across the country and world,” Shogren said. “In our work, we’ve found having people with lived experience employed and part of the entire research process is how you get authentic, applicable results that impact outcomes.”
The grant will allow Shogren and co-investigators Ben Edwards, Lindsay Rentschler and Ashley Taconet to undertake three studies:
Inclusive Research Learning Series expansion
In the first, they will recruit three other university research centers to implement the Inclusive Research Learning Series. The series is a 14-session course that benefits both research centers and people with intellectual and developmental disabilities looking to make a career in research. Over the course of the program, people with intellectual and developmental disabilities as well as research teams learn about breaking down barriers to the accessibility of the research process and employing people with disabilities in research.
Key learning outcomes in the series include how to co-design research questions, co-analyze data, follow ethical guidelines and more. Ultimately, the program helps place people in inclusive research careers.
“We’ve learned from pilot data that the discussions and activities embedded in the learning series prime both the people with lived experiences of disability and the existing research teams to embrace inclusive research practices and foster an environment of meaningful collaboration,” Rentschler said.
Gathering feedback
The second study will conduct interviews and surveys with people who have taken part in inclusive research or aim to begin researching inclusively. Data will be gathered about what works, what barriers they face and what is needed to promote or enhance inclusive research. The team will also talk with a wide range of people with intellectual and developmental disabilities about what they need and want in a research career.
Online tools
Finally, the third study will make all results available in an online course and website where more researchers around the world will be able to use the tools to integrate inclusive research as part of their operations.
The inclusive team at KUCD will ensure meaningful implementation and outcomes.
“Inclusive research works to improve the results of research by including people with disabilities like me in all parts of the project, instead of conducting research without us and then telling us what the findings are,” Edwards said. “Often, when attempts have been made at inclusive research, the inclusion is more in name than practice. That’s not the case here.”
“All too often, we see that people don’t get access to real training in research, and it can become tokenistic inclusion or limited to advisory roles,” Shogren said. “People in the disability community tell us repeatedly how harmful being treated like a token can be. And it is not good for the research team or results either. We want to change that by making research inclusive from the beginning and helping others do it successfully.”
Shogren and the team, who have conducted research on self-determination — how people with disabilities can make decisions regarding their education, careers and lives — said the project will bring a self-determination focus to expanding inclusive research.
“Beyond merely bringing people with lived disability experience to the table, it will explore the environmental supports needed to enable disability researchers’ ability to adopt and sustain inclusive research practices,” Rentschler said.
“We sometimes ask ourselves at KUCD, ‘Why doesn’t everyone do this?’” Shogren said of inclusive research. “The answer is because of the barriers that have been in place. We want to help break those barriers down and look forward to partnering with the disability community to do this.”