Request for Information: COVID-19 and Congregate Settings

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NCIL, the National Council on Independent Living needs help!

We need your help. The COVID-19 pandemic has hit our community hard, and especially people in congregate settings. These settings include places like psychiatric hospitals, intermediate care facilities, nursing facilities, developmental centers, group homes, and others. Many of our people are still trapped in these settings even as the pandemic has highlighted their dangers.

As we fight to keep everyone safe, we are also preparing for increased infections in the coming months. We are considering filing a complaint about how the rights of many disabled people in congregate settings are being violated right now. We need to know what has – and has not – been working in these settings around the country.  

If you live in a congregate setting, or if someone close to you (like a family member or friend) does, we want to hear from you.

You can share this information with us using any of the methods below:

Please provide at least one way to contact you so we can follow up if we need more information. Some of the information we receive will be used if we move forward with the complaint. We will not share your name or contact information without your permission.

We request that you please share this information with us by Friday, October 16. Thank you. 

Survey Question Examples: We are especially interested in answers to the following questions. You can answer any or all of these questions. These are just examples of the type of information we are looking for. If you have information to share with us that is not included in these questions, please do.

Since the start of the pandemic:

  1. Did you want to get out of a congregate setting – and could not? (Or, did someone you know want to get out of a congregate setting – and could not?)
  2. Did anyone offer you services to meet your needs in the community instead? (Or, did anyone offer the person you know services to meet their needs in the community instead?)
  3. Did anyone tell you that a family member could get paid to provide you support in their home? (Or, did anyone tell you that you could take your relative home and get paid to provide the support they need?)
  4. Did you think about moving into or out of a congregate setting (from another facility or the community), but couldn’t get information on the safety of the setting? Or did you want to move a family member, but were not able to get this information? This can include things like the number of infections or access to PPE.  

We also want to hear about the day-to-day experiences in congregate settings. For example:

Has the setting taken steps to protect residents and staff from COVID infection? For example:

  • Are they making sure staff wear masks, gowns, and gloves?
  • Are they testing for COVID weekly?
  • Are they practicing social distancing?
  • Are they taking other steps?

Do you have concerns about the facility NOT taking steps to protect you or the person you know? For example:  

  • Are they having the same staff work with residents who have COVID and residents who do not?
  • Is there limited use of protective equipment (like gloves and masks)?
  • Are they admitting new residents without testing for COVID, or without quarantining for 14 days?
  • Are they continuing to have residents eat or do other activities in large groups?
  • Are there other concerns?

Have you had access to an Ombudsperson or Protection & Advocacy person to talk about concerns or grievances?