State Reporting of Cases and Deaths Due to COVID-19 in Long-Term Care Facilities

Note: More recent figures are available in the “Additional State-level Data” section of our state COVID-19 data and policy actions tracker.

Introduction

COVID-19 has had a disproportionate effect on people who reside or work in long-term care facilities, including the 1.3 million individuals in nursing homes; 800,000 in assisted living facilities; 75,000 in intermediate care facilities; and 3 million people who work in skilled nursing or residential care facilities. CMS has released a series of guidelines targeted at reducing the impact of COVID-19 on nursing homes and other long-term care facilities, including guidance related to visitor restrictions, infection control guidelines, and designating separate facilities for coronavirus positive patients and negative patients. Until recently, however, there was no federal requirement for nursing homes to report coronavirus outbreaks and COVID-19 deaths, leading to an information gap for families, residents, and policymakers. On April 19, 2020, CMS released guidance that would require nursing homes to report cases of coronavirus directly to the Centers for Disease Control and Prevention (CDC). This data is not yet available, but there are a number of states that are already reporting data on long-term care facilities.

This data note provides data on long-term care facility cases and deaths by state (Table 1 and Table 2). We use data reported directly by states (versus through news outlets) through either state COVID-19 reporting or state press releases. The one exception to this is Texas’ counts, which are official state numbers sent directly to reporters 3x/week. We include all available long-term care facility data reported by state, including cases among both residents and staff, where available. Definition of long-term care facility differs by state, but data reflects a combination of nursing facilities, residential care communities, adult care centers, intermediate care facilities, and/or other congregate settings. In states reporting data in “congregate settings,” which could include locations such as jails and prisons, we removed reported cases and deaths in non-long-term care settings when possible.

Our data collection effort finds that in the 23 states that publicly report death data as of April 23, 2020, there have been over 10,000 reported deaths due to COVID-19 in long-term care facilities (including residents and staff), representing 27% of deaths due to COVID-19 in those states. Our data also finds that there have been over 50,000 reported cases, accounting for 11% of coronavirus cases in 29 states. In six states reporting data, deaths in long-term care facilities account for over 50% of all COVID-19 deaths (Delaware, Massachusetts, Oregon, Pennsylvania, Colorado, and Utah; Table 2). High case and death rates may be attributed to a number of factors, including high rates of testing within long-term care facilities and low rates of testing of the general public. The total cases and deaths from reporting states accounts for just over half (53%) of all cases, and 81% of all deaths. Given that not all states are reporting data yet and the continual lag in testing, the counts of cases and deaths are an undercount of the true number of cases and deaths in long-term care facilities.

What are states already reporting?

As of April 23, 2020, 36 states were reporting some level of data about coronavirus cases and deaths in long-term care facilities, with wide variation in types of data being reported, long-term care facility definitions, inclusion of residents/staff, and frequency of updates (Table 1). There is wide variation in the types of data that states are reporting. Nine states report fully comprehensive data on cases and deaths at the facility level, including Illinois and Oregon. Other states, including Michigan, Mississippi, and Pennsylvania, report data at the county level, citing privacy concerns about reporting at the facility level. Three states provide data on facilities only, with New Mexico providing a list of facilities with reported cases, and Arizona and Maine reporting a total number of facilities. There is also some variation in the types of facilities that states include in their long-term care facility counts. Five states report data on nursing homes only, while the remaining states report on long-term facilities more generally. State definitions of “long-term care facilities” can include a range of settings, including assisted living facilities, personal care homes, and intermediate care facilities. Michigan and New Mexico are the only two states to report on congregate settings more generally, without providing a breakout for long-term care facilities. States also vary in their inclusion of residents versus staff in the reporting cases and deaths. Eight states report data on residents only, 17 states report data on residents and staff together, and the remaining states do not specify who is included in their data. States also varied in how often they update the data, with the majority of states updating the data daily. Kentucky and Utah provide the data via a daily press conference, and other states report that they update the data several times a week or weekly. Seven states, including California, Illinois, and New York, did not clearly report how often their data was updated (Table 1).

What does the available data show?

Nationwide, among the states reporting data, states indicate that cases have occurred at more than 4,000 facilities, and nearly 51,000 cases and over 10,000 deaths have been reported (Table 2). The number of long-term care facilities with known cases varies widely across states, with New Jersey (438) and Pennsylvania (407) reporting the highest number of facilities and Maine (3), Iowa (12), and New Mexico (12) reporting the lowest number of facilities (Table 2). Of the 29 states that reported case data, New Jersey reported the highest number of cases in long-term care facilities, with over 11,000 cases. North Dakota was the only state to report fewer than 100 cases in their facilities. As of April 23^rd, the total number of long-term care facilities with known cases in the 32 states that report data is about 4,000 (Table 2). New York and New Jersey reported the highest number of deaths, accounting for over half of the total reported long-term care facility deaths.

Interactive 1:

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Long-term care facilities account for a notable share of cases and deaths in many states, with these facilities accounting for over half of deaths in six states (Table 2). Long-term care facility deaths as a share of total deaths in the state varies widely between states, from 8% in South Carolina to nearly 60% in Delaware (Table 2 and Interactive 1). Long-term care facility cases also account for a notable share of overall cases in states. Over one-fifth of cases in Oklahoma and Minnesota are in long-term care facilities. Illinois, South Carolina, and Tennessee have the lowest shares of cases attributable to long-term care facilities (5%).

Looking Ahead

State data reinforce the high risk that people and staff in long-term facility settings face during the coronavirus pandemic. The individuals that reside in long-term care facilities are among the most vulnerable in the US to this virus, given occupation density of these facilities and residents’ underlying poor health. Many individuals in these facilities have underlying medical conditions that put them at serious risk if they contract the virus, and some report being anxious and afraid due to the severe nature of the outbreaks. Nearly 40% of nursing homes in the country had infection control deficiencies in 2017, which may further contribute to high numbers of cases and deaths. Many residents do not have a private home or family to return to during outbreaks, making it important to consider what types of actions policymakers can take to protect these populations.

There is wide variety in how states are currently collecting and reporting data, and it is unclear when the federal data will become available, what form it will take, and how comparable it will be across states. It is unclear how and when nationwide detailed facility-level data will be made available to the public and how often the data will be updated. Data currently available from states provides an incomplete picture, but can be used to direct attention the issue and help inform policy solutions to help mitigate the number of deaths going forward.