Tell us what you know about children and adults with disabilities (including older adults) currently in nursing homes, congregate and other institutional facilities during the COVID-19 pandemic
NATIONAL CALL TO ACTION - April 20, 2020
Join us in stopping the mass slaughter of people with disabilities who are dying from COVID-19 in nursing homes, congregate and other institutional facilities in every US state and territory.
In the alarming absence of government intervention, there is an urgent need for immediate action by Centers for Independent Living, Protection and Advocacy systems, individual advocates and all other disability and allied organizations to find, support and protect people with disabilities in nursing homes, group homes, psychiatric institutions, residential, correctional and other carceral facilities, alternate care facilities, and other congregate facilities.
As of April 19, at least 7,300 people with disabilities have died in nursing homes from COVID-19:
An unknown number of people have perished in agonizing deaths in these and other congregate facilities.
Despite civil rights obligations to people with disabilities, the government is failing at all levels to protect people with disabilities from neglect and egregious harm. In the absence of government action during this pandemic, it falls upon the disability community and our allies to serve as vigilant advocates demanding immediate action to save our disabled siblings and others also being relegated to these death pits.
Facility owners and operators are already hungrily seeking opportunities to fill the empty beds of thousands and thousands of victims. Soon there will sadly be many more than the publicly reported 7,300 nursing home beds empty as a result of COVID-19. Loss of funding is also a motivation for the for-profit prisons to prevent the release of inmates and detainees.
A long-overdue requirement announced by HHS on 4/19 finally demands that nursing homes report on COVID-19 infections at their facility to the CDC and inform residents, their families, and representatives. While this is a start, it will have little benefit beyond admiring the magnitude of the problem.
We ask Centers for Independent Living, Protection and Advocacy systems and other disability advocacy and allied organizations to begin or continue to take action in three ways:
1. Complete this survey before May 1, 2020 so we can get a national snapshot of information not publicly available.
2. Call out the true magnitude of the civil rights violations of people with disabilities already in and those being forced into institutions and other congregate facilities. This includes any form of medical rationing and denial of disability access and accommodations.
3. Work together to protect everyone who is still alive. This includes keeping people with disabilities from becoming infected, providing personal protective equipment, health maintenance and personal assistance and services for all people with disabilities, at home, in acute care and institutional settings.
*Please submit survey responses by May 1, 2020*
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What type of organization do you represent?
Center for Independent Living (CIL)
Protection and Advocacy (P&A) or Disability Rights Network
Developmental Disability Council
State Independent Living Council (SILC)
Area Agency on Aging
Disability Rights Advocacy Group
University Center on Excellence in Developmental Disabilities (UCEDD)
Other Disability Led Organization
Other allied organization
What state(s) is your organization located?
What is the name of your organization?
Name, Title, and Contact information of person completing this form
Does your organization work with children and/or adults with disabilities, including older adults, in congregate settings?
In which type(s) of congregate settings does your organization help individuals (check all boxes that apply)
Home Transition through a Center for Independent Living
Intermediate Care Facilities
Alternate care facilities
Mental health facilities
State Veterans Homes
Homeless/ emergency shelters
Detention and other Carceral facilities
Does your organization help people with disabilities to get out of nursing homes, congregate facilities or other institutional settings?
Do you know how many people are in nursing homes or other congregate and institutional facilities in your state?
Is your organization currently communicating with individuals in nursing homes, congregate or other institutional facilities?
Was your state reporting COVID-19 cases and deaths in nursing homes, congregate and institutional facilities before the 4/19 HHS order to report to CDC?
Yes, but not all numbers or not accurate
I don't Know
Is your organization working on nursing home, congregate or other institutional transitions and facing new barriers in getting people out due to COVID-19? (Check all that apply)
Communicating with people in facilities
"Lock Down" related access to facilities
Please share good and promising practices during the COVID-19 pandemic that have been successful for your organization to: a.) communicate with individuals in facilities, b.) get people out of nursing homes, congregate and other institutional settings c.) keep people out of acute care settings when not necessary. d.) keep people out of "alternative care", nursing homes and other congregate facilities.
Is there anything else we should know?
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