Tell Us Your Long-Term Care Story


In order to be effective in our long-term care advocacy work, we need to know what is working and what is not for people who need long-term care services and supports and their friends and families.  For that, we need your help.  In order to collect the stories and insights we need, we have created these forms to gather that information. 

We have three forms available. Two of them are a part of our 2017 goal of greater enforcement of federal and state laws and regulations.  The third is a general form to collect long-term care stories on all troublesome issues or innovative care strategies.  To start the 2017 project off, we’ve chosen to focus first on just two of the federal nursing home regulations that have been “on the books” since 1989, more than 27 years now.  We feel that is sufficient time for nursing homes across the country to have developed procedures and policies and to have trained all staff regarding these two very clear regulations guaranteeing people living in nursing homes and their representatives the right to: 

  • access to all records
  • have visitors 24/7 according to the resident’s wishes

We use this information in our advocacy work only with the express permission of the people sending us their stories to:

  • compile tallies of the number of incidences of certain long-term care issues
  • create advocacy materials to inform decision-makers of the problems people needing long-term care face
  • pass these stories, with permission from the people involved, on to reporters and researchers working on various
  • stories and reports regarding long-term care issues

To ensure that no information will be used without the permission of the writer, we offer the following options at the top of each form.

  1. Keep this information anonymous and use it only for statistical counts–choose this and we will use none of the provided information and just add your story to the tally for that issue. 
  2. You may use the story itself with no identifying information for advocacy purposes–choose this and we will not use the names of any persons or services.
  3. You may use the story, home, and state with no personally identifying information for advocacy purposes only.
  4. You may use all of this information for advocacy purposes.

Click on a form to report your experiences.

Issues with access to nursing home records

Issues with visiting and visiting hours in nursing homes

Any other issues in any long-term care setting