In a letter, Senators urge the Center for Medicare and Medicaid Services to collect and report COVID-19 data in congregate care facilities—including assisted living facilities, institutions for people with disabilities, group homes, and mental health facilities
Senators: “Despite the high risk of contracting COVID-19 for older Americans, children and adults with mental illness, and children and adults with disabilities … in congregate care settings, there are huge gaps in federal reporting requirements for these facilities.”
(Washington, D.C.) – Today, U.S. Senator Patty Murray (D-WA), ranking member of the Senate Health, Education, Labor, and Pensions (HELP) Committee, joined by Senators Maggie Hassan (D-NH) and Elizabeth Warren (D-MA), sent a letter urging Center for Medicare and Medicaid Services (CMS) Administrator Seema Verma to protect people with disabilities and older Americans and finally expand data collection and reporting on COVID-19 cases in congregate care facilities—including assisted living facilities, institutions for people with disabilities, and mental health facilities. Despite how critical data collection is to identifying and responding to COVID-19 outbreaks, current gaps in CMS guidance are leaving many people with disabilities and older Americans at risk.
“Despite the high risk of contracting COVID-19 for older Americans, children and adults with mental illness, and children and adults with disabilities living in or receiving services in congregate care settings, there are huge gaps in federal reporting requirements for these facilities,” wrote the Senators in a letter to Administrator Verma. “As a result, federal government officials, public health experts, and the public have no comprehensive information on COVID-19 occurrence and fatality rates in various congregate care settings—all while residents continue to face a significant public health threat.”
In their letter, the Senators note that the Department of Health and Human Services (HHS) has already issued guidance on nursing homes recommending that states issue new reporting requirements and conduct inspections. But despite the similar risk of COVID-19 outbreaks in other congregate care settings, the Trump Administration has lacked federal guidance for other facilities that serve people with disabilities and older Americans.
The only system to monitor COVID-19 in these facilities is an inadequate patch-work of optional federal guidelines and disparate state-level reporting requirements. In fact, a review of state-level requirements revealed that only nine states currently report on institutions for people with disabilities, only seven report on group homes, and only two report on mental health facilities.
To address this troubling gap in the nation’s ability to track and respond to COVID-19 outbreaks, the Senators demanded that Administrator Verma expand current federal reporting regulations beyond nursing homes to include other congregate care facilities and take immediate action in response to serious health and safety findings.
The full letter is below and HERE.
Dear Administrator Verma,
Amid the ongoing COVID-19 pandemic, the Department of Health and Human Services (HHS) implemented critical new reporting requirements for nursing home facilities. But, a review of state-level data reporting reveals a substantial lack of data for congregate care settings for children and adults with mental illness, children and adults with disabilities, and older Americans.1 Data collection within these facilities is critical to identifying these outbreaks in order to respond, save, and protect lives and urgently needs to be improved. The Centers for Medicare and Medicaid Services (CMS) has the responsibility and authority to expand current reporting requirement regulations beyond nursing homes to include other Medicaid-funded institutions and take immediate action in response to serious health and safety findings incorporating data collected by the Centers for Disease Control and Prevention (CDC) via the National Healthcare Safety Network (NHSN).2 Given the importance of collecting this data as quickly as possible, we are requesting CMS issue guidance for mandatory comprehensive data collection and reporting on congregate care settings to better understand and address the impact of COVID-19 on people with disabilities and older Americans in these settings.
Current public health guidance indicates a high spread of the virus in congregate living conditions and among high-risk populations.3 A congregate care setting is any facility providing care for a voluntarily or involuntarily admitted patient or client that typically follows some form of licensing according to the type of facility and that may provide medical care, skilled nursing, and/or—as appropriate—food, housing, and direct care specific to the type of facility.?These facilities typically serve children and adults with disabilities, children and adults with mental illness, and older Americans. Care is provided in one location where many people – often more than 10 – are located. Types of congregate care settings include long-term care facilities such as nursing homes, psychiatric hospitals, psychiatric residential treatment facilities, other mental health facilities, institutions for people with disabilities, assisted living facilities, day facilities for people with disabilities and aging adults, and group homes.4 Definitions of these settings vary by state, largely due to states having regulatory oversight, specific licensure or certification requirements, and data collection protocols for many of these settings.
The Department of Health and Human Services has recommended that state regulators address outbreaks in nursing homes by imposing new reporting requirements, conducting inspections to ensure that infection controls and other procedures are in place, and providing facilities with PPE for staff. However, no new federal requirements have been implemented to help other congregate care settings improve their response to the pandemic, though they serve similar populations. As a result, people with disabilities, advocates, researchers, and the media have raised concerns that a parallel crisis has been playing out with far less scrutiny in other settings housing or caring for at risk populations, specifically in facilities providing care for people with disabilities.5 For instance, although CDC has issued guidance on preventing and mitigating outbreaks in group homes, this guidance is purely voluntary. Similarly, while some congregate care settings may voluntarily report coronavirus cases to the federal government through the CDC’s NHSN, they are not required to. This guidance differs from the guidance to nursing homes, which are required to comply with specific direction on standard formatting and frequency for reporting COVID-19 data to CDC.6 The lack of federal guidance has left critical data on other congregate care settings out of reach to communities working to mitigate the pandemic.
Moreover, a review of state-level data and current guidance from federal health agencies revealed states are not disaggregating data for these congregate care settings nor do these other settings have explicit requirements for federal data reporting from their respective federal agency.7 The review of the 39 states’ reporting data demonstrates that data from rehabilitation facilities (8 states), psychiatric hospitals (2 states), mental health facilities (2 states), institutions for people with disabilities (9 states), group homes (7 states), and day facilities for people with disabilities (1 state) are significantly underreported. Data from nursing homes (30 states), long-term care facilities (27 states), and assisted living facilities (26 states) are more consistently reported across states. There are varying state definitions of long-term care facilities, which makes it unclear whether data reported includes nursing homes, assisted living facilities, or other long-term care facilities. While the data indicate that most states are reporting long-term care facilities and assisted living facilities cases and deaths, they are not reporting COVID-19 cases and fatalities in these facilities directly to the federal government. Recognizing that CMS’s oversight over nursing homes varies from other Medicaid-participating institutions and providers, that does not preclude CMS from collecting data from states on care provided in congregate care settings, including psychiatric hospitals, Psychiatric Residential Treatment Facilities, and Intermediate Care Facilities.
From the review of guidance from federal agencies, the data reported from states matches the emphasis placed on nursing homes, long-term care facilities, and assisted living facilities rather than other congregate care settings. There are only two guidance documents on group homes, compared to 25 guidance documents on nursing homes, long-term care facilities, or assisted living facilities.8
As the COVID-19 pandemic unfolds, it is also critical that CMS collect and report data regarding testing, infection, and mortality rates, in order to fully understand how the virus is affecting communities of color.9 The review of the 39 states’ reporting data on congregate care settings indicates a significant lack of disaggregation of data on race and ethnicity, sex, sexual orientation, and gender identity (7 states).10 While data has indicated COVID-19 is disproportionally impacting people of color, without cross tabulation on disability, we do not know the impact on people of color with disabilities.11
Despite the high risk of contracting COVID-19 for older Americans, children and adults with mental illness, and children and adults with disabilities living in or receiving services in congregate care settings, there are huge gaps in federal reporting requirements for these facilities. As a result, federal government officials, public health experts, and the public have no comprehensive information on COVID-19 occurrence and fatality rates in various congregate care settings—all while residents continue to face a significant public health threat. The collection of this information is critical to support surveillance of COVID-19 locally and nationally, monitor trends in infection rates, and inform public health policies and actions. Thus, in order to understand the scope and severity of the pandemic within congregate care settings, providers’ COVID-19 data should be regularly reported to the federal government, and that this data be made public. To safeguard the health and welfare of people with disabilities, people with mental illness, and older Americans, we request the following action by October 30: