Congregate Settings Advocacy

Update:  October 14, 2020:  Senators Murray, Warren and Hassen sent a letter to the Centers for Medicare & Medicaid Services (CMS) regarding its failure to require all congregate facilities to report on COVID-19 infections and deaths and requesting CMS to take action.  

Update: October 7, 2020

Last week, the House passed a revised version of the HEROES Act, the COVID-19 relief package it had originally passed in May, as part of ongoing negotiations between House leadership and the White House for a much needed relief package.  Yesterday, President Trump announced a halt to those efforts until after the election, although he has since appeared to backtrack on that.

While the HEROES Act includes the top priorities of the disability community, including dedicated funding for home and community based services, those priorities are not included in the coronavirus relief proposals that the Administration has to date said it is willing to consider. We urge everyone to please contact your members of Congress and tell them that we need relief and we need it now! You can email and tweet your members of Congress directly here and you can also find more information on our advocacy page, including call and email scripts.

You can find a quick comparison of the revised HEROES Act and the Senate’s recent coronavirus proposals here. For more on what is and is not included in the House’s revised bill, check out the list we’ve put together here, which we will continue to update as we review the bill.


Institutions and other congregate settings have been disproportionately impacted by the COVID-19 pandemic. As of July 2020, over 40% of all COVID-19 fatalities in the United States have been residents or employees of long-term care facilities. Much of the focus has been  on the outbreaks and deaths in nursing homes, but people with disabilities and older adults face increased risk in all institutional and congregate settings, including Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs), psychiatric hospitals, and group homes. An effective COVID-19 response strategy must address the risks in all of these settings, not just in nursing homes, and prioritize helping people avoid going into or transition out of institutions and back to their own homes and communities.

Protecting the Lives of Residents in ALL Institutional and Congregate Settings

Since the early weeks of the COVID-19 pandemic, CPR has worked alongside other organizations to advocate for legislation and regulations to promote safety in institutional settings, and to ensure that these measures include all institutional and congregate settings, not just nursing homes. The health and lives of people with disabilities and older adults living in non-nursing home congregate settings are equally at risk—and equally worth protecting—during the pandemic. In order to do that effectively, efforts to promote health, safety, transparency, and data collection in nursing homes must include non-nursing home institutions and congregate settings as well.  Because currently only nursing homes are required to report on COVID19 infections and deaths, our colleagues at the Autistic Self Advocacy Network have set up this tracker for COVID19 in all congregate settings.

Opposing Nursing Home Immunity

We must also be able to hold long-term care (LTC) facilities liable for their actions during the pandemic. A lack of accountability would, among other things, threaten the safety of residents of LTC facilities, place health care workers at risk, and increase racial disparities in health care. CPR and other groups have worked to encourage Congress and states to oppose immunity for LTC facilities and instead focus on initiatives to promote the health and safety of people with disabilities and older adults.  Read our coalition brief opposing nursing home immunity here.

Increasing Home and Community Based Services (HCBS) to Divert and Transition People from Nursing Homes and other Institutions Back to the Community

Safety measures within congregate settings are essential to the health of workers and residents in the short-term. However, keeping people from being admitted to institutions unnecessarily and transitioning current residents out of institutions are essential to fully addressing the COVID-19 crisis in institutions and the broader health and safety risks that congregate settings posed even before the pandemic. Dedicated funding for Medicaid home and community-based services (HCBS) is critical to this effort.  That funding is necessary to ensure that states do not cut access to HCBS services during the pandemic in order to spend limited Medicaid funds on other services that they are required to cover.

Along with that dedicated funding, permanently funding the Money Follows the Person (MFP) program, which has so far transitioned over 91,000 people with disabilities and older adults from institutions into their communities, would help states continue their successful MFP programs at a time when transitions are more important than ever. You can find more information on our COVID-19 advocacy efforts, including the push for dedicated HCBS funding, here and more information on the push to permanently fund MFP is available here.

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