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Home: Honoring elders means allowing them to age in place, in the communities they helped build.
By Lise Funderburg

Metropolis
November 1996

Every morning, Victor Rohde descends five flights of stairs to the vestibule of his Greenwich Village apartment house to retrieve the New York Times. He takes the paper back upstairs, reads through it, and, weather permitting, heads out to Abingdon Square Park for the rest of the morning.

For 103-year-old Rohde, these modest treks represent his sole contact with the outside world. They serve as a walking diary of his life in the community where he's always lived. He remembers the corner saloon, now a hair salon, where beers cost a nickel and lunch was free. He remembers where the horse-drawn trolleys stopped and when they were first replaced by electric cars and later by buses. He was married a few blocks away at St. John's Lutheran Church; he and his wife, who passed away last winter, lived in this one-bedroom apartment for 70 years. They raised their daughter in this apartment, on this street, in this neighborhood. Even the simple furniture in Rohde's narrow, tidy flat holds decades of memories, evidence of a life fully lived, sharply contrasted by the circumscribed world he now inhabits. But as isolated as this life might seem, Rohde doesn't want to trade it for anything else -- not to move in with his daughter in Staten Island (though they talk three times a day), and certainly not for a nursing home.

The desire to stay independent, at home, and in a familiar neighborhood is one that Rohde shares with 84 percent of U.S. residents over 55, according to the American Association of Retired Persons (AARP). This is no small number; the percentage of citizens older than 65 has tripled since the turn of the century to nearly 13 percent today, and that group -- now some 33 million -- will double by 2030. Social service providers, government officials, and developers are scrambling to respond to the housing needs of America's elderly. And the 1990 Americans with Disabilities Act (ADA) has helped, too, by raising awareness about accessibility issues, which are central to the frail elderly as well as the disabled.

But the unaccommodating nature of the young-and-abled world leads many older people to self-segregate for safety and comfort. Marriott International has built or purchased more than 80 assisted-living complexes, which are typically atrium apartment buildings with gathering spaces inside and a semblance of hotel hospitality at the door. Housekeeping and assistance with bathing are available in the package, starting around $30,000 per year. Other elder-care companies offer several options -- from basic apartments to round-the-clock nursing -- on one site. A tenant might start with her own apartment, then move two or more times as her frailty increases.

The Del Webb Corporation has built Sun City developments, for the "active adult community... aged 55 and better," since 1960. There are now 10 Sun Cities, with golf courses, shopping centers, churches, and recreation complexes, near resort-climate hubs such as Phoenix, Las Vegas, and Hilton Head, South Carolina. Sun City homes run from $100,000 to $300,000. The average age of residents is 65, and only one of these 10 developments offers assisted care; in the others, the residents typically move out when they lose their ability to live independently.

But a "retirement community," be it a suburban development or a nursing home, doesn't appeal to everyone. The concept of "aging in place," a term coined by social service providers, refers to older people of varying abilities living independently, with convenient medical care, in safe environments that adapt to their changing needs.

As the baby boom generation gets older and life spans increase (79 years is now the average), it's harder to view aging Americans as a monolithic group, says David C. Schiess, executive director of the American Seniors Housing Association, a Washington, D.C.-based trade group for developers. For example, Sunbelt retirement communities tend to serve a segment that is younger, healthier, and wealthier than those who are living in the urban centers of the Northeast, Schiess notes. He describes the trend defined by the financially solid "young old": A couple moves to Florida after retirement. They stay about 10 years, until one person dies (usually the man). Then, Schiess says, "the widows move back to their home states, where they have a support network of friends and family, or to where their adult children live."

Housing developers have started to respond to this reverse migration, according to AARP senior housing specialist Leon Harper. One approach is to select sites that encourage family and community ties, he says. For instance, along Route 95, a major artery in the Northeast, senior housing is springing up all over. "Within 25 miles or so of cities such as New York and Philadelphia, housing is being built so residents will still have access to their children, their institutions, and their old communities," Harper points out.

Maintaining these ties has fiscal advantages for care providers, because families step in where the staff would need to otherwise. When older tenants are close to their families, friends, or helpful neighbors, Harper explains, these caregivers provide as much as 80 percent of needed resources and services. Another benefit, something that is well known in multigenerational communities everywhere, is that in these strategically placed developments the elderly have a sense of belonging, not a feeling of isolation often associated with so-called "adult communities."

As we age we require specific services in order to thrive in any community. Elders need food and drug stores nearby, good transportation, and access to medical care. And while many older people seek the stimulation of the younger generation, such interactions require free-flowing access to the community.

Two decades ago, one New York doctor recognized these needs, and crafted a multidisciplinary approach to serve the needs of a lower Manhattan neighborhood. Since then, Philip Brickner has been piecing together Medicaid and Medicare funds, hospital and private contributions, and volunteer time to coordinate three overlapping programs from St. Vincent's Hospital. Nursing Home Without Walls, Chelsea Village, and Living at Home work with the frail elderly in their homes. Some 340 limited-income patients are enrolled in Dr. Brickner's programs at any given time, usually for about two years. All the patients are housebound, with the exception of Victor Rohde.

A team -- doctor, nurse, and social worker -- makes quarterly visits to patients who live in Chelsea, Greenwich Village, Little Italy, and Chinatown. The doctor and nurse administer medications, monitor chronic health problems, and arrange for specialists to come by as needed. The social worker helps sort out paperwork, from medical entitlements to eviction notices, and is available for counsel throughout the year. During visits, the team identifies hazards that can quickly end independence: a loose electrical wire or rug that can be tripped over; a stair or bathtub that needs railings or handles. In this way, they are designers, too, checking for potential threats but also thinking in terms of ergonomics to make the environments comfortable for their frail occupants.

Laura Sheppard, 94, who lives in an apartment complex in Chelsea, stays at home thanks to the care of her 76-year-old only child, Viola, and the Chelsea Village program. Laura Sheppard's longest walk each day is to the kitchen, for breakfast. The Sheppards have occupied their apartment for the last 45 years. Today, with her social worker's assistance, Viola Sheppard is trying to arrange for a health- care attendant to come in two days a week, so she can have a break.

Family members visit, but most of the women's time is spent on their own. Even Viola Sheppard doesn't go out much, except to shop for food and to attend church on Sundays. As with Rohde, most of the Sheppards' closest acquaintances and friends have died or moved on. But this is their home and both would rather live -- and die -- here than anywhere else. As long as they're able enough to get out of bed (the fragile boundary line, Brickner says, between part-time and round-the-clock care) and as long as the Chelsea Village team comes by, that's what they'll do.

While Brickner's program isn't new, society's growing response to this group is, and it's due in large part to the expanding political power of older Americans. For example, 70 percent of registered voters over 50 voted in the 1992 presidential election, whereas only 43 percent of those aged 18 to 24 did. And there's economic clout as well; some communities offer tax breaks to developers of senior housing, encouraging the arrival of active retirees with savings and pensions to spend locally.

But for the frail elderly, especially those with limited incomes, the Sun City solution is out of the question. These people are not planning what to wear on the golf course; they're wondering if they can get out of bed and if the Social Security check will arrive in time to pay the rent. They often have to negotiate within the limits of what Medicare and Medicaid will provide. Medicaid now takes the full brunt of the $30,000 average annual cost of a nursing home; such expenses have prompted federal and state governments to recognize that people who may need assistance don't have to be institutionalized. Just because a man can't cook doesn't mean he's ready for a nursing home. If he lives in Oregon, Texas, California, or Maryland, states that have taken the lead on this issue, he can choose from several exemplary programs that provide home-based care.

Until recently, assisted living was a luxury restricted to those who could afford it. "We're struggling to expand the concept into the general population," Harper says, "so that no matter what your level of income or what community you're in, that assistance is available to you." The Philadelphia Corporation for Aging (PCA) is an example. Funded largely by federal monies apportioned by the Older Americans Act of 1973 and by the state lottery, PCA provides free home repair to low-income seniors. Such programs benefit the neighborhood as well: consistent upkeep protects everybody's property values.

On a broader scale, naturally occurring retirement communities (known as NaRCs) are a new target for aging-in-place support. James Callahan, professor of social policy at Brandeis University, has identified 22,000 such communities across the country, where at least 45 percent of the heads of households are 65 or older. The communities may evolve in a Manhattan high rise or in a suburban enclave. Callahan is researching the feasibility of making age-related adaptations, such as building ramps and lengthier walk signals, on a community-wide basis. In the six years since the ADA was passed, some attention has been paid to universal design and accessibility, but many places remain hostile to those with impaired movement, sight, and hearing.

More than goodwill, economics are bound to be the primary motivation for such modifications as well as for programs like Dr. Brickner's: typically, caring for people in their own homes costs some 40 percent less than nursing facilities.

That Dr. Brickner's typical patient runs up smaller bills than a local nursing home would raises a morbid question: Year for year, his program might be less expensive, but doesn't its success mean that people will live longer, and thus cost society more? "If the intention is strictly to save money," Brickner says sarcastically, "you might just as well take people out and shoot them, and at a much earlier age. I mean, why wait until they're 80? Take them out at age 50."

Of course, this is absurd. But Brickner believes our national obsession with productivity prematurely discards older people. Some ethicists, he notes, argue that money going into elder care would be better spent on curing childhood diseases and birth defects. As America ages, the question of what sort of life is worth living will be increasingly debated.

For Victor Rohde, a life worth living is one lived at home. Although he walks to the square every day he can, gone are the warm nights when he would get a beer from the corner and sit on the stoop with his neighbors. Now, the other tenants are nice enough, he says, "but they go about their business. It's a younger crowd." And though they helped him sort out furniture after his wife died and invite him to brunches and parties, Rohde would rather read mystery novels or the paper. "He's very private," says nurse Theresa Maja, who heads the Chelsea Village program. But he is neither isolated nor depressed; he's friendly, funny, quick, and seems quite happy in his busy neighborhood. He wishes he could walk faster -- his pace is a slow, short shuffle -- but he gets where he wants to go.

Leon Harper suggests that many of the younger and able-bodied have difficulty grasping the profound significance staying at home has for the elderly. Brickner, however, sees up close how much it matters: "People are desperate to avoid going into an institution. I've had patients say they'd rather die at home than live in a nursing home." Aging in place allows them some control over their lives, Harper says, "Even if it's just 'when I want to eat' or 'when I go to the bathroom' as opposed to highly scheduled institutional living. That takes away their whole sense of dignity." At home they can keep their sanity just by looking around them, remembering who they are and what they have accomplished.