City residents looking for alternatives to nursing home care, particularly those with limited incomes, confront an array of hurdles: lack of affordable housing, a shortage of safe and  accessible apartments, not enough home health care aides and waiting lists at many programs.

One festivity was not enough for Emilia Lopez when she turned 100 this spring. She had three parties—and an excursion to an Atlantic City casino where she won $300. And no wonder. Lopez had a lot to celebrate: Not only had she reached the century mark, but she attained it while still living alone in the west side apartment she has occupied for decades.

Vivacious, scrupulous about her appearance and eager for activity, Lopez is adamant about her independence. “I can do almost everything,” she says, emphasizing that she lives alone in her own home, doing her own cooking.

Not everyone likes to cook, but by most accounts the vast majority of older people—particularly in New York—are aging in place like Lopez. The COVID pandemic spurred a 15 percent decline in nursing home occupancy in the U.S. in 2020, but even before it, New York State residents were among the least likely in the country to be in a nursing home or assisted living facility. Nursing home occupancy rates across the state fell to 88 percent in 2020, the lowest level in more than a decade, according to data compiled by the Kaiser Family Foundation. With about 1.2 million New York City residents 65 and over—and 162,000 who are 85 and up—only 41,000 people live in nursing homes in the five boroughs.

But New Yorkers looking for alternatives to nursing home care, particularly those with limited incomes, confront an array of hurdles: lack of affordable housing, a shortage of safe and  accessible apartments, not enough home health care aides and waiting lists at many programs. All but the affluent must navigate a patchwork of programs with varying criteria and benefits. Without major policy changes, the increase in the city’s 65 and older population—projected to surpass 1.4 million over the next two decades—will almost certainly make it harder for New Yorkers to age in their homes and get the help they need.

Who pays for what

Unlike many countries, the United States does not have a long-term care system, says Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College. “We didn’t ever give it any kind of concentrated thought.”

When most Americans think of healthcare for seniors, they think of Medicare, the government health-insurance program for people aged 65 and over. But while Medicare pays for nurses and therapists providing aid, it does not cover the more routine help given by home health care aides or long-term care in nursing homes and assisted living facilities. People needing these services either have to pay for it themselves or qualify for Medicaid, the medical program for low-income people of any age. About one-fifth of Medicare recipients also meet the stringent requirements for Medicaid.

Medicaid then determines whether people are eligible for long-term care and/or other services. Those who are can go into a care facility that accepts Medicaid. If they want to remain at home, like Lopez, they can get home health aides and other care in New York, which is more accommodating than many other states. Unless a person is in a facility, though, Medicaid does not provide rent assistance or food.

Howard Gleckman of the Brookings Institution has estimated that only 15 to 20 percent of Americans receiving long-term care are in a nursing home or an assisted living facility. But, he said in an interview with NPR, “People are driven to nursing homes by the Medicaid payment system. If you need long-term care, Medicaid will pay for your room and board in a nursing home. It will not pay for it anywhere else. So that’s an incentive for people to use nursing homes.”

Those who don’t qualify for Medicaid have to pay for their long-term care—wherever they receive it—themselves. Many are forced to deplete their savings, borrow money or rely on family to do so. Assisted living in New York City costs almost $6,000 a month, and a nursing home almost $13,000 a month, while day service (not including housing expenses) comes to about $1,950 a month.

Another problem is ensuring that the person actually gets the care he or she needs. The state requires that people who qualify for Medicaid and Medicare enroll in a managed long-term care plan, many of which are run by for-profit companies. The system, some say, has led to cost overruns and some advocates question whether the for-profit companies have an incentive to skimp on services.

Despite the complications of providing care in a person’s home or close to it, experts say it is worth the effort for several reasons.

One is cost. Though estimates vary, most find that it costs more than twice as much for someone to live in a private room in a nursing home in New York than to stay in their own home with a home health aide.

Another is personal satisfaction. It’s a cliché that nursing home residents complain about the food, but their discontent often goes beyond that, says Dheki Dolma Lama, director of transition programs for the Center for Independence of the Disabled, NY. Patients in nursing homes, she says, often find “their personal choice gets lost. They lose control. …Their quality of life is totally controlled by the nursing home.”

‘A nursing home without walls’

COVID highlighted the shortcomings of institutions, such as the difficulty of containing infections in them, says Meghan Parker, advocacy director for New York Association on Independent Living. People are told they will be safer in a home, she says, but “in reality there are supports and services available in the community that can help people remain at home and they are often safer and happier.” The problem, she says, is connecting people to the services they need: “It can be very overwhelming.”

Lopez says her daughter was navigating that maze for her when she found PACE—short for Programs of All-Inclusive Care for the Elderly—a federal program for low-income people 55 and over who qualify for nursing home care. Medicaid pays for her home health aide, who does a variety of tasks that make it possible for Lopez to remain in her apartment, including accompanying her to the grocery store and doing her nails.

Lopez spends part of the week—these days about 12 hours—at the ArchCare Senior Life Center in Harlem. The center, run by ArchCare, the Continuing Care Community of the Archdiocese of New York, offers camaraderie, lunch and activities such as bingo, along with a clinic and services like occupational therapy. ArchCare also connects Lopez and her fellow residents with other services they might need and keeps track of their prescriptions.

“We make all arrangements. We try to provide everything you can imagine,” says James Williams, ArchCare’s director of enrollment and member services, who likens the program to “a nursing home without walls.”

Lopez says she and her daughter are happy with the program. But they are among the fortunate ones.“There are a lot of people who would benefit from this program but might not qualify,”  because they are not considered eligible for a nursing home or have too much money, Williams says. And there are not always enough spaces even for those who are eligible.

And the person needs a place to live, no small challenge in New York. A 2017 report by the city comptroller’s office found that 39 percent of people aged 65 and over who owned their homes and 60 percent of those who rent had to spend more than 30 percent of their income on housing, higher than for the population as a whole.

The state government has funded some senior housing and the de Blasio administration says its Housing New York 2.0 program has produced 7,390 apartments for seniors. But demand still exceeds supply. A study by LiveOn NY found that 44,028 older New Yorkers are on the waiting list for affordable housing in just two Upper West Side community districts. Those waiting lists can be seven to 10 years long.

Not only are apartments expensive, many are not appropriate for aging residents. The same comptroller’s report found, for example, that less than half the city’s housing has a wheelchair accessible entrance. Older housing—and its sometimes poor condition—can make installing even a simple grab bar a major project. Although the city and state have programs to assist with this, the funding has been extremely modest.

This forces many older New Yorkers into nursing homes or poor housing situations. Allison Nickerson, executive director of LiveOn NY, says some city seniors live doubled up, sleeping in bunk beds.

At the Center for Independence of the Disabled, Lama works with people thrust into New York’s crazy real estate market when they try to leave their nursing facility, some after years there.

These people, she says, “say they want to die in their home and it’s their right.”

Making that move can be difficult, though. Housing, Lama says, is “the biggest barrier. The largest percentage of people are waiting because they don’t have a home to go to.” The city could help, she says,  by classifying people seeking to leave nursing homes as homeless, making them eligible for certain housing assistance. So far the city has not done that.

Selfhelp Community Service has housing for seniors – just not enough of it.  The non-profit, originally funded to help people fleeing the Holocaust, is one provider of affordable housing with services, a model LiveOn has praised for improving quality of life while it “deters higher healthcare costs and prevents homelessness.”

Selfhelp operates 11 buildings with more than 1,400 residents, who, the organization says, live independently. The apartments are not furnished, residents prepare their own meals and come and go as they please.

But there are supports. “We believe our housing is not just bricks and mortar but a way to provide services to make a house a home,” says Vice President Sandy Myers.

The buildings feature some community facilities and many are near other programs serving older people, such as senior centers. Perhaps most importantly, each also has a social worker on site who connects residents with whatever other services they need. “They are available to do pretty much anything—even opening a can for a resident, ” says Mohini Mishra of Selfhelp Realty Group/The Melamid Institute for Affordable Housing. Despite that, Medicare does not cover the cost of social workers.

Anyone 62 and over having a low to moderate income and a household of no more than two people can apply for an apartment. The funding for specific buildings may set further requirements—that a person have been homeless, for example. SelfHelp admits people with a range of needs, from those who are almost completely independent to those who require all-day care.

Once again, the problem is supply. The waiting lists are long and only three of the organization’s projects are currently accepting applications.

Programs, policies and proposals

The city and state provide a variety of services that help older New Yorkers stay in their homes. New York City Department for the Aging funds some 250 senior centers across the city, which reopened last month after a long COVID closure. The sites serve lunch—and sometimes breakfast—and offer some health services, workshops and recreational activities. The agency also provides money for services at selected housing developments, or in neighborhoods that weren’t built for seniors but include a high percentage of older people—what it calls a Naturally Occurring Retirement Community or NORC.

Another city program, popularly known as SCRIE, freezes the rent for low-to-moderate income older New Yorkers living in certain types of housing. Mayoral candidate Eric Adams, who recently won the Democratic primary, has pledged to automatically sign eligible residents up for SCRIE if he’s elected in November.

In light of the growing need, governments at various levels are pledging to do more. The city has announced plans to increase the number of senior centers and provide more transportation options.. “New Yorkers need to age in their homes and avoid institutionalization,” Alice Du, deputy director of the city Department for the Aging, wrote in an email.

President Joe Biden’s infrastructure plan includes $400 billion over eight years to provide more care for seniors in their homes. The proposal does not go into details, and as far as can be determined does not address the many seniors who do not qualify for Medicaid but also cannot afford long-term care, whether at home or in a facility.

Instead it focuses on improving conditions for home health workers, who are widely seen as vital to any effort to keep older and disabled Americans in their homes. These caregivers—most of them women of color—make an average of $12 an hour in the U.S. and many do not have employer-provided health insurance. Not surprisingly, experts foresee a looming shortage of people willing and able to do this work.

A CUNY report issued in March found a similar situation in New York State, with home health care workers in the city getting an average hourly wage of $15.93. The writers recommend raising the pay to $22 an hour. While this would require additional government spending, they argue that  paying the workers—who are mostly women, immigrants and people of color—would pump money into the economy and save money on public assistance, which many aides now receive to supplement their wages.

The plan would also address the shortage of home health workers, who currently perform taxing work for low wages. “People can do jobs that are much easier, such as work in fast food restaurants, and make as much or more money,” says Parker.

Advocates tried to change this equation in New York this year by promoting the Fair Pay for Homecare Workers bill that would have raised the pay for these caregivers to 150 percent of the minimum wage. The bill did not get included in this year’s budget, but Parker says the effort will continue next year.

Aside from this, advocates have a list of things that might ease the care crunch in New York. Much of it is centered around housing, such as more money for the federal Section 202 program that creates homesfor very low-income older people, rental assistance and making it easier for people to learn about and receive help from the city’s existing rental freeze program.

Advocates would also like to see the system tweaked so that a few people who need part-time care could share an aide. “Now things are so siloed and so individual. Everyone is on their own,” says Nickerson.

In general, says Parker, there is a lot the state could do to help older New Yorkers and others with disabilities live independently, but she says, “We haven’t seen that in the last few budgets.”

Many experts see a larger need to rethink the care system for older Americans and others who need long-term care—for low-income people and also middle-class residents who don’t qualify for Medicaid but still may not be able to get the help they need wherever they prefer to live.

“There needs to be a fundamental rethinking of what care looks like,” says Nickerson. “We have to think of things very, very differently because the model we have now doesn’t work.”

City Limits’ Age Justice series explores the issues facing a graying New York. It is supported by the New York Foundation.