As of today, ASAN will discontinue our COVID-19 Tracker because we do not have enough good quality data to keep it updated. For almost three years, ASAN has maintained a national database of cases of COVID-19 and deaths from COVID-19 in institutional settings, including nursing homes, group homes, and others. Ending this project was a hard decision for us to make. COVID-19 is far from over. People with disabilities are still dying from COVID more often than people without disabilities. Our most marginalized community members are still in the most danger, especially people in institutions. New COVID-19 variants are spreading quickly. Our community still needs information on COVID-19 in institutions to stay safe and to keep our loved ones safe. Unfortunately, due to changes in how and whether states and the media report data on COVID-19 cases and deaths, we do not have enough information to keep the Tracker up to date.
During 2020 and part of 2021, most U.S. states released at least some data on COVID-19 in places like institutions. These data gave ASAN a lot of information about cases and deaths. Over time, many states have stopped releasing data we can use to the public. Most states now only release high-quality data to CMS and only collect data on nursing homes. This leaves out many other institutions and similar living situations, where disabled people are grouped together in ways that create a high risk that illnesses like COVID-19 will spread. States that are still releasing data are formatting it in ways that make it less useful.
The non-governmental sources of data we used have disappeared. At the beginning of the pandemic, large media organizations released nationwide data on cases and deaths in institutions and institution-like settings. ASAN used data from these sources in the Case Tracker along with data from states. These data are no longer available. Local news articles on cases and deaths in specific locations were also an important source for the Case Tracker. Far fewer articles are being published today. Overall, there is less data for us to use. The data we have is lower quality than it was in the past.
This is happening because society is treating COVID-19 like a past event, even though people still catch the virus every day. People with disabilities, especially those living in institutions, people of color, and older adults still die at higher rates. Diminished access to good data is an outrage. It will harm countless people with disabilities and other marginalized people. The lack of good data will make it more difficult for us to protect ourselves and each other, demand better infection controls, and advocate for the end of institutionalization.
While we will no longer be updating the tracker, ASAN will continue to fight for a pandemic response that does not leave people with disabilities behind. We will continue to highlight COVID-19’s disproportionate impact on our community and other marginalized communities. We will continue to urge governments to protect people at high risk of severe illness or death. We will continue to provide cognitively accessible information on COVID-19 and vaccination. The fight for our health and safety is not over.
ASAN will stop updating the COVID-19 Case Tracker page with new data and will no longer accept data on COVID-19 deaths in congregate settings. If you want more information on ASAN’s COVID-19 related work, please contact info@autisticadvocacy.org.