Left behind in the “Return to Normal”: People with intellectual and developmental disabilities' outcomes and supports 4 years into COVID-19

Abstract

The COVID-19 pandemic has impacted people with intellectual and developmental disabilities (IDD) immensely. While the pandemic and life during it has changed over time, by the end of 2023, the most prominent narrative was a “return to normal.” Yet, there is less research about people with IDD's quality of life and services and supports beyond the initial waves of the pandemic. The aim of this study was to examine the impact of the COVID-19 pandemic on people with IDD's quality of life outcomes and supports 4 years into the pandemic. Using a repeated cross-sectional design and linear and binary logistic regression models, we analyzed secondary Personal Outcome Measures® data from 4549 people with IDD from 2018 to 2023 in the United States (n = 4391; 32 states), Canada (n = 142), Ireland (n = 12), New Zealand (n = 3), and Australia (n = 1). We found people with IDD's quality of life outcomes and supports have yet to return to prepandemic levels. In fact, not only was almost every area of quality of life negatively impacted, many people with IDD who were interviewed in 2022 and 2023 had worse outcomes and supports than those interviewed earlier in the pandemic. Instead of clinging to the idea that life or the service system for people with IDD has “returned to normal,” we must recognize that normal was never a good enough destination to return to for people with IDD in the first place. Instead, we must commit to a new normal that is inclusive, accessible, and equitable.