By Carli Friedman, CQL Director of Research
People with intellectual and developmental disabilities (IDD) are not only at greater risk for contracting and dying of COVID-19, but also saw their lives significantly disrupted during the pandemic. Yet, less attention has been drawn to the needs of this community during the COVID-19 pandemic, including when it comes to research. For these reasons, the aim of this study was to examine how people with IDD’s quality of life outcomes changed during the COVID-19 pandemic. To do so, we analyzed Personal Outcome Measures® data from 2,284 people with IDD.
Our findings revealed, controlling for all participant demographics, there were five outcomes which saw the largest changes between 2019 and 2020:
- People experience continuity and security;
- People interact with other members of the community;
- People participate in the life of the community;
- People have intimate relationships; and
- People choose personal goals (see figure).
Differences in Quality of Life Outcomes During the Pandemic
“It is important to note people with IDD’s quality of life outcomes were not particularly good in 2020 or 2019 – even in 2019, a large proportion of people with IDD in the sample did not have many of the outcome areas present… While the pandemic has been undoubtably hard on the IDD community, in many ways it has simply intensified an underfunded and fractured service system, upon which people with IDD depend… However the IDD service system evolves during and after the pandemic, it must be done in a way that prioritizes the quality of life of people with IDD… Most importantly, as a community that has been significantly impacted by the pandemic, people with IDD must be consulted in whatever changes are made; as the famous self-advocacy quote goes, ‘nothing about us, without us’” (Friedman, 2021, pp. 15-18).