Until her stroke in the fall of 2001, Shirley Zaiman had lived in the same apartment for 40 years. Neighbors, friends, and even the local congressman knew her as a "dynamo", but suddenly she was unable to communicate or even eat on her own. So when Zaiman was discharged from the hospital, she didn't return to 303 West 66th Street. She moved into the Jewish Home and Hospital, a nursing home.
Doctors cautioned that Zaiman might never be able to leave, even as they started physical and speech therapy. But the idea of spending the rest of her life at the facility was unacceptable to Zaiman, her friends, or her family. She insisted on moving back to the moderate-income co-op on 66th Street.
Luckily for Zaiman, her building has an extensive social service program whose explicit goal is to allow elderly residents to get the help they need to continue to live at home. The program, which had started a decade earlier as little more than a cat-sitting service, had been her own idea.
Lincoln House Outreach, as the program is known, allowed Zaiman to live out her life at her home. She passed away January 1.
The elderly have more options about how to spend the later years of their lives than ever before. In the past, many people with significant needs would have had to rely on hospital-like nursing homes; now many have the option of moving into more residential assisted living facilities. In other cases, seniors are staying at home with the help of programs like Lincoln House Outreach.
Pressure from advocates has combined with the high costs of paying for expensive nursing home care to force governments to consider changing how they provide services to the elderly. As the number of seniors grows, the number of nursing home residents is actually dropping.
Governor George Pataki has appointed a commission to "right size" the industry in New York State, which has the largest nursing home population in the country. This means two things: shutting down nursing homes, and expanding support for alternative forms of supportive services for the elderly. Some advocates worry that the interest in saving money will mean closures, but insufficient support for alternatives.
Addressing the needs of New York City's aging population will be a major challenge for policymakers. At 1.3 million, the senior population of New York City is already larger than the total population of all but a handful of American cities, the city's fastest growing age group is those over 85 years old, and the first of the baby boomers are turning 60 this year.
OPTIONS FOR CARING FOR THE ELDERLY
When they need health care or social services, elderly people have various options, depending on how much attention they need.
Nursing Homes: Nursing homes offer a level of medical attention that is just below that of a hospital. While they do not, for instance, provide surgery, nursing homes are arranged to give intensive, around the clock medical care. Residents generally stay in single rooms that resemble hospital rooms arranged along hallways similar to hospital wards.
Because they are so much like hospitals, nursing homes are generally not seen as attractive places to spend long periods of time. Healthier people are avoiding them as developing alternatives allow, and those who stay in nursing homes are sicker than those in the past. In 1977, 30 percent of nursing homes residents could dress themselves; by 1999 only 13 percent could.
Increasingly, people are relying on nursing homes for short-term acute care after hospitalizations, as opposed to living in them for years. The average length of stay is about half what it was in 1996. Even nursing homes themselves agree that they shouldn't treat people who could live more independent lives.
"Nursing homes are much more centered on rehabilitating people and getting them back into the community," said Scott Amrhein of the Continuing Care Leadership Coalition, a trade group whose members include nursing homes.
Assisted Living Facilities: A step below nursing homes in terms of intensity of care are assisted living facilities, residential developments where some services such as meals and medical care are offered, but 24-hour care is unavailable. These are designed to seem more like apartment complexes than hospitals. New York recently began regulating assisted living facilities in an attempt to give them the quality control and legitimacy they need to serve as alternatives to nursing homes.
A big problem with assisted living facilities, say advocates, is that they are out of the reach of many seniors. Medicaid dollars generally cannot be used to pay for assisted living care, and many people of low and moderate income cannot afford them otherwise. Affordable assisted living, said Amrhein, is a "big gaping hole in the market."
Aging in Place: Most care for the elderly, though, continues to be provided informally by friends or family members. According to the state, 70 percent of American seniors rely completely on such "informal" help. Since there will be only six potential caregivers for every senior by 2030, it adds, there is a serious need for alternatives.
New York City has the largest local department of aging in the country and "there really has been a huge investment" from the government to fund community centers and other services allowing seniors to maintain a level of independence, said Bobbie Sackman of the Council on Senior Center and Services of NYC.
New York City is an ideal laboratory for plans that allow seniors to "age in place", experts say, because the high population density makes it easier to provide services.
Evelyn Rich and Mavis Otway, two of the volunteers who help run Lincoln
New York City was home to the first so-called Naturally Occurring Retirement Community. These are communities â€“ sometimes apartment complexes or neighborhoods, sometimes public housing, sometimes single buildings â€“ with a certain density of elderly people, where social services are created to serve people where they already live.
Both New York City and New York State offer grants for such programs, and the city is now the location of 28 of the 80 such publicly funded programs nationwide, including the nation's largest, located in Co-op City. There are 350,000 seniors in New York City who live in areas that qualify for either city or state grants for Naturally Occurring Retirement Communities. Of those, 49,000 live in places that actually receive such grants, according to the United Hospital Fund.
New York is considered a leader in the movement, with advocates hailing both the city and the state's commitment. Earlier this month, Senator Hilary Clinton urged the federal government to look to New York as a model for forming its own such program.
DOES NEW YORK RELY TOO MUCH ON NURSING HOMES?
Only a tiny fraction of seniors live in nursing homes. Still, New York State's rate of 4.6 percent is higher than the nationwide average of 4.0 percent, and more than double the rates in states that have aggressively reorganized the way they care for the elderly. Advocates for seniors regularly cite the reduced use of nursing homes as a goal. This desire has been reinforced by the Supreme Court, which ruled in 1999 that unnecessarily institutionalizing someone is discriminatory according to the Americans with Disabities Act.
Today, a good indicator of how well a state is serving its elderly population is to look at proportion of people in nursing homes, says Don Redfoot, a policy analyst for the American Association of Retired Persons. The lower the better, he says.
"The state itself suffers too, by virtue of putting all of its eggs in the most expensive basket," said Redfoot.
Because nursing homes provide such intensive care, they are an expensive way to provide services. New York's Medicaid system pays $11 billion annually for nursing home care, and the amount it spends continues to rise. If someone can be treated somewhere else, many argue, it makes financial sense to do so.
But if nursing homes are undesirable and expensive, why does New York rely on them?
One reason is that Medicaid and Medicare were established with nursing homes â€“ not home care or assisted living facilities â€“ in mind. Medicaid dollars can be easily used for nursing home care, but not assisted living facilities. Using the public insurance system for home care requires states to apply for special waivers from the federal government. While some states have made widespread use of such waivers to give Medicaid recipients access to a wider range of services, New York has lagged behind.
Because poorer people tend to be bound by the restrictions of Medicaid while richer people are not, who ends up in a nursing home is also a class issue. In New York City, 20 percent of seniors live in poverty â€“ twice the national average. A greater percentage of New York's nursing home residents are on Medicaid than in almost any other state.
The high cost of living in New York City puts additional pressure on those of modest means, making nursing homes a financial necessity for those without other options, argues Amy Paul of Friends of the Institutionalized Aged, a local advocacy group.
"It's really hard to pay for expensive medical care and maintain your apartment in this area," she said.
Among the enthusiasm to keep people out of nursing homes, Paul and others, including representatives of the nursing home industry, stress that while alternatives may be more attractive in the best of circumstances, nursing homes do serve an important role when serious problems do occur.
"If it's possible for someone to live in the home, I think everyone would embrace that concept," said Dan Curran of the New York Association of Homes and Services for the Aging, a trade group whose members include nursing homes. "But you have to have the systems in place to help people when all does not go according to plan."
RETHINKING THE SYSTEM
The financial pressure that nursing homes (and hospitals) are putting on the state are what led Governor Pataki to create the Commission on Health Care Facilities in the 21st Century, whose goal is to determine how best to reshape the state's nursing home and hospital industries.
Governor Pataki has given the commission a lot of power to close facilities. Gubernatorial candidate Eliot Spitzer, however, said last week that he didn't think he should be bound by its recommendations if elected governor. State Senator David Paterson, Spitzer's running mate for lieutenant governor, has introduced a bill to weaken the commission's influence.
Still, the commission believes that 14 percent of residents in nursing homes could be better served elsewhere, and that New York has 7,000 too many nursing home beds. Occupancy rates are falling off, it argues, and more than half of New York's nursing homes lose money. The commission will likely recommend closing some nursing homes.
In New York City the area most likely to face closures is the Bronx, which the commission believes has too many nursing home beds, said David Sandman, the commission's executive director.
Critics of the commission do not argue that reducing the focus on nursing homes is improper. Instead, they stress the need to combine such a shift in focus with the bolstering of alternatives. This could be particularly crucial in New York City, where the commission has identified Manhattan and Brooklyn as areas with "significant need" for alternatives to nursing home care, where fewer than half of those who could benefit from non-institutional care are able to find it.
There are alternatives to nursing homes in some cases, say advocates, but simply deciding to use nursing homes less doesn't necessarily mean that those in need will find their ways to alternatives more often.
"We haven't seen that dotting i's and crossing t's in terms of support services," said Paul. "We have to make sure that those services are in place before we starting closing the brick and mortar investment that we've put into protecting the elderly."