Abstract
Disability rights advocates emphasize “Nothing about us without us,” yet a program evaluation or surveillance team’s composition rarely reflects inclusion of the individuals from the disability populations they focus on. Individuals who have lived experience with disabilities should be present during all steps of program evaluation and surveillance projects in meaningful ways to progress the impact of disabilities work. In this paper, we describe a process used by staff at Alaska’s University Centers for Excellence in Developmental Disabilities (UCEDD) to hire, train, and work with individuals with intellectual, development disabilities (IDD) as team members. The case example for the inclusion effort was the National Core Indicators (NCI) In-Person Survey (IPS). Recruitment started in December 2020 with Zoom interviews for the NCI IPS occurring from March through August 2021. The project team included ten staff members, one of whom also was an individual who experiences an IDD (partner interviewer). Team members completed web based and Zoom training sessions. Throughout the training and onboarding process, project leads sought to modify the training and project implementation to better suit the expressed needs of all team members. To support the partner interviewer with IDD, two team members with research and program evaluation experience served as “lead” interviewers. Project leads also created a simplified version of the NCI IPS instrument for data collection. Multiple training sessions were held to acclimate the lead and partner interviewer with the team interview process and modified data collection instrument. Recommendations for improving our UCEDD program evaluation and surveillance inclusive practices were noted: Involve individuals with disabilities in every part of project planning processes; allow team members agency in selecting their projects and room for flexibility if research plans don’t work out; establish open communication and safe spaces for all team members; provide comprehensive, accessible, and equitable training; give team members a sense of timelines and trajectories of research projects with regular check-ins; adjust practices for an increasingly online work environment with COVID-19; develop accessible training, data collection and data entry systems; and invest in all team members long-term.
Plain Language Summary
Disability advocates use the phrase “nothing about us, without us.” This means no research should be done on people with disabilities without people who have disabilities on the team. The authors of this paper had an individual who has a disability and found the training and survey were not easy to use. The team changed parts of the survey process to make it easier so the team members who experienced a disability could take part. After finishing the project, the authors recommend involving people with disabilities in the whole process, being flexible, talking a lot, providing better training, and hiring people who will stay.
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Recommended Citation
Douglas, Tamara M.; Rabang, Nathan J.; Attla, Marlene A.; Boyer, Tasha; and Hiratsuka, Vanessa
(2024)
"Inclusion in Disability Evaluation and Surveillance Projects: Reflections and Recommendations For Inclusive Project Teams,"
Developmental Disabilities Network Journal: Vol. 4:
Iss.
2, Article 7.
DOI: 10.59620/2694-1104.1087
Available at:
https://digitalcommons.usu.edu/ddnj/vol4/iss2/7