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National Survey on Institutionalization in the Wake of COVID-19

Map of states showing survey respondence with states highlighted in red.


Territories we received responses: U.S. Virgin Islands and Puerto Rico. 

Territories without responses: Guam, Northern Marianas, American Samoa. 

Survey Background: 

Between April 20th and May 1st, The Partnership sent a survey to Centers for Independent Living, Protection and Advocacy agencies, advocates and organizations to obtain a national snapshot about disability advocacy and congregate settings during the COVID-19 Pandemic. 

108 Total number of responses to the survey.

National Distribution of Responses

State  Number of respondents State  Number of respondents
National 3 Massachusetts  3
Arizona  5 Minnesota  1
Arkansas 1 Montana 2
California 3 Nebraska 
Colorado 3 New Jersey 6
Connecticut 4 New Mexico  2
DC 1 New York  12
Florida  6 North Carolina  1
Georgia  3 Pennsylvania  5
Georgia/ SC 1 Ohio  1
Hawaii  1 Puerto Rico  1
Idaho  2 Texas  11
Illinois  US Virgin Islands  1
Illinois & Iowa  1 Virginia  1
Iowa  3 Washington  9
Kansas  1 West Virginia  2
Maryland  2 Wisconsin  1


77% 84 respondents say their organization help people with disabilities leave nursing homes, congregate facilities, or other institutional settings.
Respondents say their organization works directly with children and/or disabled adults, including older adults, in congregate settings.  91
58  Centers for Independent Living responded.
                    Disability Advocacy Groups responded.   13
50%  Of respondents do not know how many people are in nursing homes or other congregate facilities in their state.
    State Independent Living Councils Responded   7
73 67.6% of respondents assist individuals with Home Transition through a Center for Independent Living
  • 19 respondents said their state HAD REPORTED COVID-19 cases and deaths in nursing homes and other congregate facilities prior to the April 19th, Health and Human Services (HHS) order to report to the Center for Disease Control.
  • 20 respondents said their state HAD NOT REPORTED COVID-19 cases and deaths in nursing homes prior to the HHS order to report to the CDC.
  • 32 respondents said they DIDN’T KNOW if their state had reported any cases or deaths prior to the HHS order. 
  • 29 respondents said YES, BUT THE NUMBERS ARE NOT ACCURATE.
79 Respondents currently communicate with individuals in nursing homes or other congregate or institutional facilities.


Congregate Settings Receiving Assistance from Respondents

Congregate Setting  # of Respondents Assisting Individuals 
Nursing Homes  67
Group Homes 47
Immediate Care Facilities  36
Alternate Care Facilities  29
Residential Facilities 46
Rehabilitation Facilities  46
State Veterans Homes 27
Homeless and Emergency Shelters 49
Correctional Facilities  31
Detention and other Carceral Facilities 20
Mental Health Facilities  40

Advocates reported encountering new barriers to transitioning individuals out of nursing homes, congregate, and other institutions.

  • 51 respondents reported barriers preventing communication with people in facilities.
  • 56 respondents reported “lockdown” prevented access to facilities.
  • 31 respondents reported encountering “Red Tape.”
  • 32 respondents reported funding barriers preventing transitions out of facilities. 

Promising Practices Advocates reported success when they: 

  • Use established connections with hospitals and nursing homes to divert or remove people to independent situations.
  • Leverage allies and government to get what they need.
  • Use remote means, including buying burner phones for clients. 
  • Ignore the rules and go inside anyways. 

This concludes our initial report from The Partnership's Call To Action - National Survey on Institutionalization In the Wake of COVID-19. Following interpretations, findings, information, and recommendations will be shared in the weeks to come. Please stay tuned, and please share within your networks.  


People with disabilities are 2-4 times more likely to die or be injured in any disaster, and our community is experiencing the disproportionate impact throughout the COVID-19 pandemic right now. We must be prepared to respond and amplify our unified message, together.

We, at The Partnership, thank you for your support and efforts to educate, advocate, and make a difference for people with disabilities in your community before, during and after the ongoing COVID-19 pandemic and all public health emergencies and disasters.

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