Documenting the impact of COVID-19 on people with disabilities in congregate settings
COVID-19 is spreading uncontrolled through institutions, and people with disabilities are paying the price. Most people with disabilities in congregate settings (such as nursing homes, institutions, group homes and psychiatric hospitals) are not being offered personal protective equipment, or any way to protect themselves from getting sick. Their staff may not have protective equipment either. With no visitors, many people in institutions have no way to report abuse and neglect. And at a time when sanitation is more critical than ever, congregate settings are no longer being inspected to ensure that staff are implementing infection control measures such as hand-washing.
It’s critical that we understand how many people we are losing as COVID-19 spreads through institutions — but some states aren’t reporting numbers of COVID-19 infections and deaths in congregate settings, and the federal government isn’t keeping track. The COVID-19 case tracker combines information from news articles and state & local government reports, to give us the most complete picture possible.
Nationwide Reported Numbers:
If you have questions about the COVID-19 Case Tracker, or for more information, email tracker@autisticadvocacy.org.
Right now, there are three different ways we’re tracking COVID-19 infections and deaths:
- Reports that mention the numbers for an entire state.
- For example, the Centers for Medicare and Medicaid Services’ COVID 19 Nursing Home Data
- Reports that mention the numbers for specific counties within a state.
- For example, NJ Long Term Care Facilities with COVID-19 Cases from the New Jersey Department of Health.
- Reports that mention numbers for one specific institution.
- For example, Central California Nursing Home Reports 154 Coronavirus Cases, 8 Deaths from CBS Sacramento
- You can see our full list of individual setting data by clicking the “Individual Settings” tab above.
The numbers are not exactly the same from each of the three sources. It might be easier to find the numbers for an entire state than to find out how many cases and deaths have happened at specific institutions.
Below you can see the current tallies for each of our three methods. Where the numbers for a particular state differ depending on the source, we’ve chosen to use the highest number available as our final tally. We’re using the highest available numbers because we are basing our tracking on publicly-available reporting, and COVID-19 cases in institutions are most likely being undercounted and underreported.1 Therefore, we believe that by displaying the highest reported numbers we are providing the most accurate information we can to the best of our ability.
In the following states it was not possible to remove staff members from the available data publicly reported by the states: Alaska, Arizona, Arkansas, Colorado, Hawaii, Idaho, Illinois, Iowa, Kansas, Maine, Maryland, Massachusetts, Minnesota, Montana, Nebraska, Pennsylvania, New Hampshire, New Mexico, New York, North Dakota, Ohio, Oregon, South Dakota, Vermont, Virginia, Washington, West Virginia, Wisconsin, and Wyoming. Georgia, Florida, Kentucky, and South Carolina have additionally stopped providing data and thus can no longer be properly disaggregated. The data of Arkansas, Iowa, Maryland, Pennsylvania, Vermont, and West Virginia on this list has either stopped being published or no longer lists cumulative cases or deaths, thus making already flawed data of worse quality.
There are a number of reasons removing cases and deaths pertaining to staff members was impossible in these states. For some states, data separating cases and deaths for residents and cases and deaths for staff is entirely unavailable. For many of these states, data separating staff deaths from resident deaths is unavailable, but data separating resident cases from staff cases is. In those situations, we have provided data for only residents wherever possible.
For a number of states, there is no publicly available data at all; these states typically have very low reported case and death numbers as a result. For other states, the publicly available data has changed or become worse since we began tracking, and either no longer tracks the number of cases and deaths at all, or else it does not separate residents from staff. We therefore must rely on outside sources to keep track of the true number of cases in these states, and these sources may include staff in their data. There are also some states which report data from multiple relevant sources separately; ASAN will continue to attempt wherever possible to locate such information and enter it into our tracker.
The very fact that the data available is inconsistent from state to state, that some states are not making any data publicly available at all, and the fact that the majority of states fail to disaggregate staff and resident data is extremely alarming. ASAN will continue to advocate for better-quality data that properly conveys the impact of this pandemic on people with disabilities living in congregate settings.
Note: We are only trying to track numbers for the residents of institutions.
If you only have time to submit a link to an article or report about COVID-19 case numbers, use the Quick submit option below.
However, if you are able to answer a few questions about the article, such as where the institution is located and how many cases were reported, you should use Submit with details. The more information you can give us, the faster we can include it in our tracker.
References
| ↑1 | Bunis, Dena. “Nursing Homes Ordered to Disclose COVID-19 Cases, Deaths.” AARP, 20 Apr. 2020; Kliff, Sarah, and Julie Bosman. “Official Counts Understate the U.S. Coronavirus Death Toll.” New York Times, 5 Apr. 2020; Khimm, Suzy, et al. “More than 2,200 Coronavirus Deaths in Nursing Homes, but Federal Government Isn’t Tracking Them.” NBC News, 12 Apr. 2020. |
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