By Carli Friedman, CQL Director of Research
Historically, research about people with intellectual and developmental disabilities (IDD) has been conducted through proxies because of ableist assumptions about people with IDD’s abilities to contribute to research and methodological challenges to conducting accessible research. For these reasons, it is important for research design to maximize people with IDD’s participation and recognize them as experts on their own lives with valuable opinions and contributions. Although surveys are a common quantitative methodology due simplicity of design, if not designed and implemented intentionally, they can exclude people with IDD, hindering data validity. To contextualize the need for ethical research and accessible survey methodology, this entry will first describe the history of research with people with IDD. We then explain the advantages and disadvantages of survey research with people with IDD. Finally, we provide guidance about how to utilize surveys in a way that maximizes accessibility for, and, participation of, people with IDD.
This abstract is a summary of the following book chapter: Friedman, C. & Spassiani, N. A. (2024). Making survey research accessible for people with intellectual and developmental disabilities. In G. Bennett & E. Goodall (eds) The Palgrave Encyclopedia of Disability. Palgrave Macmillan. https://doi.org/10.1007/978-3-031-40858-8_77-1
Making Survey Research Accessible for People with IDD: Book Chapter