Coronavirus or no, why do we have so many people in nursing homes?

FDNY Ambulance and personnel respond to the Brooklyn Queens Nursing Home at 2749 Linden Boulevard in Brooklyn.

Each day, we learn more about the dreadful toll that COVID-19 has exacted on nursing home residents. There is much to say about the inadequate staffing and lack of enforcement that predated the coronavirus and worsened its impact. But as this crisis makes us reexamine many things we long took for granted, so too should it prompt us to also ask why so many older adults are left with little choice but to reside in these facilities in the first place.

Despite a growing acknowledgment that home and community-based services are preferable to institutional care, public policies and funding have not been sufficient to realize that goal. As a result, the U.S. has more than 1.3 million adults living in nursing homes, with many more living in long-term institutional settings for persons with psychiatric, intellectual and developmental disabilities. They all face unprecedented risks right now.

As lawyers working on behalf of older people with disabilities, we have seen numerous instances in which structural barriers and ageism either push clients toward nursing homes when they could remain in the community or make it next to impossible for them to get out of nursing homes once there. Too often, there is a presumption that nursing homes are the only feasible place for some older persons to live as their physical and mental capacities start to wane.

First and foremost is the challenge people face getting medically necessary services at home. Medicare coverage is limited to only certain types of care, and then generally limited in hours and duration. Private long-term-care insurance policies are expensive, with increasingly restricted benefits. New York’s Medicaid program, which is only available to those with limited means, does cover home attendant services so that recipients can get assistance with walking, bathing, eating and other essential needs. But even for those with Medicaid, actually getting the necessary care can require countless hours of effort and advocacy. And recent moves in Albany to tighten Medicaid home care eligibility will make it even more difficult.

Then there is the crisis in informal caregiving. Stretched to the brink, many family members care for spouses, parents and other relatives without compensation, paid leave from their employers and respite care.

The challenges in obtaining care also occur against the backdrop of financial insecurity for many older adults. In New York City, where we practice, eviction can serve as a pipeline to institutionalization, merely because suitable, affordable housing is not available or accessible for a person with a disability.

Once an individual is placed in a nursing home — even if the placement is supposed to be temporary — it is nearly impossible to get out. In one of our clinic’s cases, an older woman was discharged from the hospital to a nursing home after a stroke left her paralyzed and using a wheelchair. She had an affordable apartment waiting for her, but it took two years of legal advocacy to get an entrance ramp and other modifications at her building and then to get coverage of all the health services she needed to live safely at home. She ultimately won those battles but lost precious time toward the end of her life.

Even before COVID-19 introduced unprecedented dangers to nursing homes, the benefits of remaining in the community were clear. Aging in place with home and community-based services leads to better clinical outcomes than institutional care in areas such as physical strength and functional abilities, improved cognition and mental status and increased life expectancy. Moreover, the average annual cost of home health care is lower than that for private room nursing home care, and the disparity is only increasing.

Some may say there are those for whom community-based care is not viable. But history has taught us that persons we formerly believed could only reside in institutions can successfully reside in the community with access to the right supports. Even for older adults with the most significant needs, we have seen that humane, cost-effective, comprehensive long-term care communities can provide assistance with less medication, greater patient and family satisfaction, and better health outcomes than institutionalized settings like nursing homes.

Notwithstanding the risk from COVID-19 to older adults wherever they reside, this crisis has brought the dangers of long-term institutional care into tragic relief. We would be remiss if we didn’t respond not only by making nursing homes safer but by promoting policies that assist older persons to remain in the community and avoid institutions altogether.