COVID-19 and Persons With Intellectual and Developmental Disabilities: Implications for Future Policy, Practice, and Research.
COVID-19 showed that people with IDD are first to lose services and first to die—build their voices into your crisis plan today.
01Research in Context
What this study did
Moya et al. (2022) wrote a commentary about COVID-19 and people with IDD.
They looked at early data showing higher death rates and lost services.
The paper calls for new policies that include people with IDD in planning.
What they found
People with IDD died from COVID-19 at higher rates than the general public.
Day programs, therapies, and respite shut down almost overnight.
Families were left with no backup plan and little guidance.
How this fits with other research
Shpigelman et al. (2024) later interviewed families of adults in supported housing. Their stories back up the 2022 warnings: lockdowns cut off staff visits and meds.
Coe et al. (1997) saw the same pattern after Japan’s earthquake. People with ID were left behind because registries and backup supports did not exist.
Symons (2022) adds that research itself failed this group. Both papers say the "new normal" must put IDD voices at the table, not just study them.
Why it matters
COVID-19 proved that current emergency plans ignore your clients with IDD. Use the paper’s checklist now: add each client to a local registry, list two non-family helpers, and give families a printed crisis contact sheet. These steps take 15 minutes but can save hours in the next outage.
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02At a glance
03Original abstract
The COVID-19 pandemic has been hard for everyone. For the estimated seven and a half million people in the United States who live with intellectual disability (Residential Information Systems Project, 2020), it has been very hard. Lives have been disrupted by lost jobs, lack of access to friends/family, and challenges finding enough staff to provide supports and needed healthcare. Studies have shown that people with IDD are at a much greater risk of getting COVID-19 and dying from it (Cuypers et al., 2020; Gleason et al., 2021; Kaye, 2021; Landes, Turk, & Ervin, 2020; Nygren & Lulinski, 2020). Without question, people with intellectual and developmental disabilities (IDD) struggled as the COVID-19 pandemic began and as it has continued. Too many were isolated from friends and family for far too long. Too many were lonely and bored. Too many have not received the support they have needed during the pandemic. Far too many were denied treatment and far too many have died. As a nation we must reflect on what has happened and listen to people with IDD and their families about their experiences. This commentary reflects on the implications of COVID-19 for research, policy, and practice through the lens of people with IDD.
American journal on intellectual and developmental disabilities, 2022 · doi:10.1352/1944-7558-127.4.270