Silenced: Residents' Fear of Retaliation in 40 Nursing Homes in Illinois, Summary of 42 State Investigation Reports
By Eilon Caspi, PhD
November 28, 2024
Report prepared for Alliance Community Services
“We constantly hear about retaliation fears and actual harm to residents, families and staff. This is a rapidly escalating problem that results in inconceivable suffering , and it must be stopped.”
-Kris Sundberg, Executive Director, Elder Voice Advocates
Introduction
Residents’ complaints in nursing homes are considered ‘the front-line system for addressing their concerns’ (U.S. Office of Inspector General, [OIG] 2006) and ‘a critical safeguard to protect vulnerable residents’ (OIG, 2017). However, research has found that 23% of nursing home residents worry about retaliation when voicing care concerns. It also found that “worry about potential retaliation was just as fearsome for some individuals as the experience of retaliation itself” (Robison et al. 2007; 2011).
In addition, Kristine Sundberg, Executive Director, Elder Voice Advocates in Minnesota stated
recently, “We constantly hear about retaliation fears and actual harm to residents, families and staff. This is a rapidly escalating problem that results in inconceivable suffering, and it must be stopped.”
A recent report titled They Make You Pay: How Fear of Retaliation Silences Residents in America’s Nursing Homes (Long Term Care Community Coalition, 2023) – based on a study in 100 nursing homes in 30 states – identified serious emotional and physical consequences on residents experiencing fear of retaliation, threats of retaliation, and actual retaliation (Caspi, 2024a). The study showed that fear of staff and managers’ retaliation represents a strong barrier for reporting and investigating rights violations, care concerns, neglect, and abuse.
In accordance, the National Long-Term Care Ombudsman Resource Center (2018) stated, “Fear of retaliation is one of the most common reasons residents do not want to pursue a complain and disclose their identity.” Related to it, investigative journalist Chris Serres (2017a) wrote, “The threat of retaliation not only terrifies residents..., it discourages them and their families from taking steps that would protect their rights or enforce public regulations.”
The study by Caspi (2024a) has generated overwhelming evidence demonstrating the gross
asymmetry of power that often exists between residents and staff/managers. Physically dependent on staff for meeting their basic care needs, many residents remained silent to avoid retaliation. They continued to suffer while their care was neglected and/or when they were verbally and/or physically abused. Many perpetrators and care providers were not held accountable for their acts (such as retaliatory neglect and abuse) and residents were sometimes forced to continue and receive care from perpetrators or see them in the care home when they were not immediately suspended pending investigations.
Background on Current Project
The Alliance for Community Services commissioned a report on residents’ fear of retaliation and actual retaliation when voicing care concerns in Illinois nursing homes. The project started on October 21, 2024. A total of 42 state investigation reports from 40 nursing homes served as the basis for this report (the reports were retrieved primarily from Nursing Home Inspect (ProPublica) website but also from a CMS dataset received through a FOIA request). Each investigation report was reviewed and summarized to shed light on residents’ lived experience of fear of retaliation, threats of retaliation, and actual retaliation against them. The summaries are presented here (pages 4 to 47) followed by a discussion including practical and policy implications (pages 48-50).
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