Care or Containment? Experiences of Disabled Nursing Home Residents

Background and Purpose

Despite the significant accomplishments of the movements for deinstitutionalization and independent living, a significant number of people with disabilities live in nursing homes and similar congregate settings. The disproportionate and deadly toll of the Covid pandemic in these facilities focused renewed attention on ongoing concerns with conditions in which residents live. This paper uses qualitative methods to ask how residents experience institutional life, and how they deal with too-common affronts to their dignity and basic rights. Because many nursing homes employ at least one social worker, these questions have significant implications for social work practice.

Methods

Data for this paper come from two sources. The first is ethnographic observation of the work of a Chicago-area activist group that seeks to organize nursing home residents to push for improved conditions. Since early 2022, I have observed the group’s weekly online meetings in which residents share issues they are facing and turn to one another for assistance. I have also been present for strategic discussions, accompanied a resident and allies in confronting facility management over substandard conditions, and traveled to the state capitol with members working to pass nursing home reform legislation.

The second source is a set of 8 in-depth semi-structured interviews with current and former residents of congregate facilities living in the Chicago area. I spoke with three Black women, three white women, one Black man, and one white man. They had a range of disabilities, and several had spent time in multiple facilities.

Results

Residents paint a grim picture of institutional life. Facilities are understaffed, and residents report waiting hours for workers to assist them with basic bathroom and hygiene needs. Many had low expectations; as one said, “I don’t ask for much. This is a nursing home, I don't expect anything more from the nursing homes.” Several spoke of arbitrary rules that seemed to change from day to day. Residents also shared multiple reports of past abuse, including physical assaults by staff. But there were few means of redress. Residents who called 911 were not taken seriously by dispatchers. Those who attempted to go through designated channels and report problems to the Illinois Department of Public Health, which oversees the facilities, faced retaliation from management. Stronger anti-retaliation protections are a key tenet of proposed reforms, and the nursing home industry has opposed them.

Conclusions and Implications

These findings paint a picture of facilities that provide containment rather than care, with policies designed to make residents docile and easily managed at minimal expense. When residents discussed social workers, it was usually in tones of frustration or wariness, rather than as trusted advocates. We must grapple with the fact that nursing homes are sites of social work practice, and how, if at all, such practice can move toward alignment with the NASW Code of Ethics. In the realm of policy, these findings highlight the importance of improving nursing home conditions, while providing home and community-based services to allow people to avoid these facilities where possible.