Proxy Responses in Research on COVID-19 Among People With Intellectual and Developmental Disabilities

Researchers and advocates have long called for improved research methods that better include people with intellectual and developmental disabilities (IDD), but challenges to doing so persist. Proxy responses are frequently used to circumvent some of these challenges, but may not fully capture the perspectives of people with IDD. The COVID-19 pandemic highlighted the possibility of consequences due to a lack of research about health outcomes for people with IDD, with documented disproportionate impact but little understanding about specific experiences for people with IDD. Using exploratory graph analysis (EGA) we explored the use of proxy responses on the COVID-19 Supplement of the National Core Indicators In-Person Survey. Findings suggest significant differences in response patterns between people who answered independently, via proxy, and with a mix of response types beyond what would be expected due to demographic differences in participants.