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We Haven’t ‘Returned to Normal:’ Outcomes & Supports Worse than Before COVID-19

Posted on July 11, 2024

By Carli Friedman, CQL Director of Research

Medical anthropologist Martha Lincoln (2021) coined the term “immunosupremacy” to mark the ways a population’s “social worth” was conflated with their ability to survive COVID-19 during the pandemic (p. 53). As a result, certain populations became expendable in order to promote the life of others (Lincoln, 2021). Disabled people, especially people with intellectual and developmental disabilities (IDD), have been one of those populations during the pandemic. Not only are they more likely to die from COVID-19 (Centers for Disease Control, 2022), but their quality of life has been significantly hindered during the pandemic (Friedman, 2021; Vinoski Thomas et al., 2023).

During the early stages of the pandemic, additional flexibilities and funding were introduced to help reduce the impact of the pandemic on the service system and people with IDD. However, these changes, as well as most COVID-19 precautions, have since been rolled back. Expressions such as ‘post-pandemic,’ ‘during COVID,’ and ‘returned to normal’ are commonplace these days. And yet, the COVID-19 pandemic is not actually over according to the World Health Organization (n.d.). In fact, despite the lack of protections and precautions – or perhaps, as a result of it – December 2023 to January 2024 was one of the largest waves of the entire pandemic (Santhanam, 2024).

While COVID-19 continues to impact people’s lives, significantly less attention is being drawn to the impact on people with IDD. Most research about the impact on people with IDD’s quality of life and quality of services is from the earlier phases of the pandemic. We must have data about people with IDD’s experiences to determine how to best provide quality supports. For this reason, the aim of this study was to examine how people with IDD’s outcomes and supports have changed throughout the pandemic. To do so, I analyzed Personal Outcome Measures® interviews from 4,550 people with IDD from 2018 to 2023.

My findings revealed by 2023 people with IDD’s quality of life was still worse than it was in 2019, regardless of their sociodemographics. In fact, there were many outcome areas that were present less frequently in the later waves of the pandemic than they even were earlier in the pandemic – while some outcomes were affected early in the pandemic and never recovered, others backslid altogether as the pandemic went on. For example, controlling for all sociodemographics, compared to 2019, the odds of people with IDD being free from abuse and neglect decreased by 17% in 2023. (See full journal article for more detail about how individual outcomes and support areas changed each year.)

Quality of Life Outcomes and Supports by Year (Controlling for Sociodemographics)

total outcomes and supports by year. Outcomes: 2019 = 12.6; 2020 = 11.5; 2021 = 10.1; 2022 = 10.3; 2023 = 11.2. Supports: 2019 = 13.0; 2020 = 12.7; 2021 = 11.1; 2022 = 10.5; 2023 = 10.8.

The impact on people with IDD’s outcomes is very likely due to them receiving lower quality supports during the pandemic, even beyond early waves. In fact, people with IDD were less likely to have many of the supports in place in 2022 and 2023. For example, much like the disparity related to abuse and neglect outcomes shared above, the odds of people with IDD receiving person-centered supports to ensure they are free from abuse and neglect decreased by 60% in 2023 compared to 2019.

“Our findings suggest people with IDD’s quality of life outcomes and supports have yet to return to pre-pandemic levels. In fact, not only was almost every area of quality of life negatively impacted, some outcomes and, especially, supports were less present later on in the pandemic… Many disabled people and people from other marginalized communities have pushed back against the ‘return’ to normal, a privilege they never had to begin with. ‘Returning to normal’ means accepting and returning to structural inequities that existed prior to the pandemic and in some cases, putting back barriers that were removed during the pandemic… Disabled people have called for a new ‘normal,’ one that is more inclusive, accessible, and equitable… 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 moving forward” (Friedman, 2024, pp. 8-11).

READ FULL STUDY

This article is a summary of the following journal manuscript: Friedman, C. (2024). Left behind in the “return to normal:” People with intellectual and developmental disabilities’ outcomes and supports four years into COVID-19. Diversity & Inclusion Research, 1(2), e12014. https://doi.org/10.1002/dvr2.12014

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