The COVID-19 pandemic and quality of life outcomes of people with intellectual and developmental disabilities

Abstract

Background People with intellectual and developmental disabilities (PWIDD) are contracting and dying of COVID-19 at significantly greater rates than nondisabled people and people with other disabilities. Despite the increased risk of COVID-19 for the IDD community, there has been less attention drawn to the impact of the pandemic on people with IDD, especially beyond their health and safety. Yet, PWIDD also face unique challenges as a result of the pandemic compared to other populations. Objective The purpose of this study was to explore the impact of the COVID-19 pandemic on the quality of life outcomes of PWIDD. Methods We conducted a secondary analysis of Personal Outcome Measures® interviews from 2019 to 2020 ( n = 2284). Results There were significant differences in the following quality of life outcomes of PWIDD between 2019 and 2020: continuity and security; interact with other members of the community; participate in the life of the community; intimate relationships; and, choose goals. Conclusions Our findings suggest the COVID-19 pandemic has negatively hindered the quality of life outcomes of PWIDD in a number of different areas. While the pandemic has been undoubtably hard on the IDD community, in many ways it has simply intensified an underfunded and fractured IDD service system. 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 PWIDD and what is most important to them.

Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID‐19 pandemic: An international, mixed methods study of nurses' perspectives

“…These findings are consistent with the perspectives of people with IDD themselves, who reported that the interruption of social relationships with family and friends was the greatest consequence of lockdown, followed by missed recreational and leisure activities (Navas et al, 2021 ). Significant differences in self‐reported quality‐of‐life outcomes of people with IDD in pre‐pandemic 2019 and 2020 have been reported, with people with IDD being less likely to interact and participate in the community, have intimate relationships, and experience continuity and security (Friedman, 2021 ), all of which stand in violation of the UN's Convention on the Rights of Persons with Disabilities Optional Protocol (United Nations, 2006 ). IDD nurses and health professionals must act on their duty to safeguard the human rights of people with IDD and to support people with IDD to engage in self‐advocacy efforts, particularly during public health crises where human rights of people with disability are more highly threatened.…”

Stressors associated with the COVID‐19 pandemic, disability, and mental health: Considerations from the Intermountain West

“…While some scholars have noted that the increased flexibility associated with remote work opportunities during the pandemic may have been a ‘silver lining’ for adults with disabilities, they also acknowledge that most are not concentrated in high‐potential occupations relative to their non‐disabled counterparts (Schur et al., 2020). Further, Friedman (2021) found that individuals with intellectual and development disabilities experience a significant reduction in quality of life across multiple indicators between 2019 and 2020. Specifically, there has been a decrease in continuity and security, community participation, and likelihood to maintain intimate relationships.…”

The mental health and well‐being of adults with intellectual disability during theCOVID‐19 pandemic: A narrative review

“…The most common mental health symptoms reported by adults with ID were worry (28%) and stress (27%), with 29% feeling scared to go to the hospital or doctor if sick. A secondary analysis of personal outcome measures from 2248 interviews with people with ID in the United States found that reported quality of life in the first year of the pandemic had deteriorated from the year prior (Friedman, 2021 ). Another longitudinal study of adults with ID age 40 and older in Ireland (IDS‐TILDA) found that 60% of people self‐reported (independently or with support) stress and anxiety following the first lockdown with the pandemic being worse for people with pre‐existing anxiety.…”