Being old and with a disability ranks high as a target for discrimination in American culture, where ageism and ableism often prevent the public from seeing marginalization as an aberration. Yet, deeper within the aging and disability population is an even more overlooked subgroup that unequivocally suffers the most dismissive and blind neglect by the government, commercial interests, and public sentiment at large. The group consists of our most chronically and seriously ill individuals who live in nursing homes.
The more than 1.2 million nursing home residents in the United States represent the most seriously ill and disabled of our communities, and most happen to be old (82 percent over 65 in 2020) and poor. In the more than 70 years of Medicaid funding of nursing home care, these facilities have become the accepted norm and endpoint for those without sufficient resources and personal support in the community who need 24/7 care. This remains so, even as quality issues, poor monitoring, and lax regulatory enforcement have persistently marked its history. Exhaustive federal and state regulation has been insufficient to ensure that nursing homes meet their obligation to “care for its residents in such a manner and in such an environment as will promote maintenance or enhancement of the quality of life of each resident” and to “provide services to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident, in accordance with a written plan of care. . . .” 42 U.S. Code § 1395i–3.
The individuals who depend on care in these facilities are more likely to be poor and very old. Over 62 percent of nursing home residents are funded by Medicaid, the state/federal program for low-income persons, and over 26 percent are non-white. More than 60 percent are over age 75, and a third are over 85. The percentage of nursing home residents who are people of color is consistent with their percentage in the U.S. population. Nevertheless, numerous studies have found harmful disparities in the nursing facility care received by residents of color, according to a 2022 review of the literature by Justice in Aging. For example, one study found that Black individuals generally were admitted to nursing facilities with an above-average number of deficiencies, and this correlation persisted after controlling for differences between residents. Another reported that Black hospital patients were more likely than white patients to be admitted to nursing facilities in the lowest quartile of quality. The same study found a similar disparity among patients without high school degrees compared to high school graduates.
Institutional Environments
The most tangible, unsavory feature of most nursing homes is their institutional character. There are only two populations in the United States in which, as a matter of policy, we use long-term, institutional placement—nursing home residents and convicted felons. Nursing home facilities are typically large, older buildings, averaging 107 beds nationally, modeled upon hospital design going back to the 1960s and ’70s. We call them homes, but there is nothing home-like about them.
Residents forfeit their life-long norms of privacy and dignity by being housed with strangers in multiple occupancy rooms along long, sterile hallways dominated by nursing stations. Residents typically lack access to kitchens, opportunities for home cooking, or meaningful control over most daily activities. They are cared for by staff whose annual turnover rate has averaged over 100 percent, according to a comprehensive payroll-based study of over 15,000 nursing homes published in 2021. Poor working conditions, pay, and support all drive turnover. Most people want to avoid entering a nursing home at all costs other than for short rehab services on their way back home.
The institutional environment, combined with factors of age, disability, and race of nursing home residents, creates a marginalizing, multi-intersectional form of discrimination that plays out negatively in decision-making, care quality, and quality of life. To address this, I argue that policy transformation must start with changing the physical environment that currently enervates life in most of these facilities.
A Humanizing Alternative
Advocates and policymakers have understandably prioritized the expansion of home and community-based services as an alternative to nursing home care, but no matter how successful the expansion of such services is, there will always be a need for 24/7 skilled residential care for a segment of the population. However, the model for that care need not be institutional. An alternative generically known as the small household model has proven itself superior for some decades but has only grown to represent a small slice of nursing home care.
Core elements of this built environment include living units of fewer residents (roughly 10 to 20); single rooms with private bathrooms; residential design as a community home in both exterior and interior design (e.g., no long corridors or nursing stations); accessible kitchens with communal resident and staff dining; and greater access to the outdoors. While small home environments do not by themselves guarantee a respectful and high-quality of life and care for residents, it is a critical foundation and springboard for delivering dignified, person-centered, quality care.
Perhaps the most well-organized and studied of homes adopting this model are those that comprise the Green House Project. There are nearly 400 Green House Homes in 32 states, with 87 percent of them licensed as skilled nursing homes. Housing no more than 12 residents per unit, they can be either separate small homes on a campus or a vertical set of apartment homes. Their residents fare better than in traditional nursing homes on multiple measures, including better health outcomes for residents, greater resident and family satisfaction, and lower direct-care staff turnover. The advantages of Green House nursing homes especially stood out during the COVID-19 epidemic—experiencing one-third the mortality rate of traditional nursing homes and less than half the infection rate while maintaining a significantly higher occupancy rate. Moreover, the turnover rate of certified nurse assistants was one-third that of traditional nursing homes.
The operational costs of Green House and similar homes are close to that of traditional homes. The more difficult challenge for nursing home owners is the capital costs of either replacing or substantially rehabilitating existing older buildings. Most states are actively avoiding the building of additional nursing home beds, and many are trying to reduce the number of beds, making rehabilitation or replacement the only realistic option in most states.
