ACLU Supporter –

We want to inform you of a growing crisis in our country that has largely continued out of sight.

To date, deaths in nursing homes and other congregate settings for people with disabilities account for nearly half of all COVID-19 deaths in the U.S. These are deaths to residents – people with disabilities – and staff – who are disproportionately people of color.

If current trends hold, nearly 90,000 people living in these facilities could die by October 1. Read more on our analysis of this grim crisis here.

These high death rates are not a coincidence or "inevitable" as many claim. They're the result of a system of discrimination and de-prioritization of people with disabilities that existed long before COVID-19.

Here's what we can tell you: After the Department of Health and Human Services (HHS) declared a public health emergency, four months passed before it started to require nursing homes to publicly report COVID-19 infection and death rates. HHS still does not require other congregate settings, including institutions for people with intellectual and developmental disabilities and psychiatric facilities, to report deaths.

ACLU Supporter, this lack of transparency doesn't just leave us without complete data to help control the pandemic – it allows lives to be lost without our knowing. In some cases, facilities have actively hidden deaths.

It's unacceptable. The ACLU has filed a petition with the Service Employees International Union (SEIU) and disability rights organizations calling on HHS and its agencies to meet its obligations under federal law – including providing true transparency to who is living, working, and dying in these institutions. But we all must do more to bring this issue to the forefront.

Please learn more on the urgency of this discriminatory crisis during COVID-19 and the importance of demanding the truth from HHS now.

Thanks for reading,

Brooke Madubuonwu
Director of Legal Analytics & Quantitative Research, ACLU

P.S. This work is all part of an ongoing series by my colleagues and me to help bring this deeply disturbing crisis to public attention. Read the first piece here and watch our website for more.