CHELSEA, Mass. — The Leonard Florence Center for Living in this working-class neighborhood on the outskirts of Boston is technically a nursing facility — a place most people hope they can avoid. But for Rhoda Klein, age 79, this five-story urban complex feels like home.
There's a calm and comfortable atmosphere in Klein's apartment, which she's decorated with her own dresser, chair and other furnishings she brought from her house in Florida. Outside Klein's door is a common area with an open kitchen, a fireplace and a long dining room table where other residents in her suite often hang out to talk or eat. The residents interact with their caregivers, assigned four at a time to the suite, with the ease of old friends. There aren't many rules or schedules to follow. "I decide every morning what I want to do that day," Klein says. "I can share group meals if I want to. Or play bingo and just have a snack. If I get hungry later, someone will make me a meal."
Klein's nursing home lifestyle is also notable for what it isn't. There's no long gray linoleum corridors with doors that open onto shared rooms with nothing but a curtain between the beds. No beeping monitors or carts full of soiled linens and no patients in wheelchairs parked in the hallways. Few rules govern when, what and where residents can eat.
The brand new facility is one of a new breed of small, homey nursing facilities cropping up around the country, thanks to state collaborations with the nursing home industry, federal regulators and advocates for the elderly and disabled. It looks like a place only wealthy families could afford, but about half of its residents get their bills paid by Medicaid, the federal-state health care program for the poor.
Massachusetts played a big role in making the $37 million center in Chelsea possible. And it's encouraging other nursing homes across the state to provide similar settings and more personalized services, whether in new buildings or traditional ones. In fact, nearly every state now is promoting what policymakers and advocates simply call "culture change" — creating environments for the aged and disabled that feel more home-like than institutional.
At its heart, the movement is about giving elders a say in how they're cared for, says Sarah Wells, director of The National Consumer Voice for Quality Long-Term Care. But it isn't easy to reverse habits and procedures or undo the architecture of institutions that have been around since the 1960s, when the enactment of Medicare and Medicaid spawned a major expansion of the nursing home industry.
"We've seen huge improvements over the years," says Wells. "But we still have a lot of work to do."
For millions of Americans — and state governments, too — the question of what kind of care nursing homes should provide will be impossible to avoid in the coming years. By 2020, the number of people aged 85 years and older — those most likely to need long-term care — will reach 15.4 million, up from 4.3 million in 2000, according to the U.S. Census Bureau. For states, nursing homes and other long-term care services represent more than 30 percent of a more than $320 billion annual Medicaid bill.
The reason nursing homes have traditionally had an institutional feel to them is that most were designed in the mode of hospitals. That mentality extended to the physical space, leading to a standard two-wing design with a nurse's station in the middle — a floor plan known in the industry as the "double-loaded corridor." It also extended to the state regulations and rules governing everyday life in nursing homes. These tended to favor considerations for safety and medical care over concern for residents' quality of life. Little or no attention was paid to making residents comfortable or fostering relationships between the staff and residents.
As a result, frail elders in nursing homes have suffered from the "three plagues of boredom, helplessness and loneliness," says Dr. Bill Thomas, a geriatric physician and a leader in the culture change movement. A self-described nursing home "abolitionist," Thomas would like to see old-style nursing homes eliminated altogether.
That won't happen anytime soon. The nursing home industry is not growing; it's shrinking. Despite an increase in the number of frail elders who need care, more are opting to remain at home or enter an assisted living facility where they can live more independently.
According to the Centers for Disease Control and Prevention, there are some 16,000 nursing homes in the United States, averaging about 30 years old with an occupancy rate of 86 percent. Most of them were designed the old way, and many will need renovation or replacement in the next decade.
At a minimum, Thomas says state policymakers should put a moratorium on any new construction of institutional-style nursing homes. "Every single time a state green-lights an old-fashioned nursing home, they're condemning its residents to inferior care for the next 30 or 40 years until that building wears out," he says. "That's not a good investment."
In their place, Thomas wants to see more small cottages or apartments like the one Klein lives in at the Leonard Florence Center — designed for 10 to 12 residents with skilled health care workers who give individual attention to each person. Thomas' design has been replicated in 50 such facilities in 13 states, built with the support of the Robert Wood Johnson Foundation and NCB Capital Impact, a nonprofit community development organization. Dozens of other small nursing facilities have been built across the country with the same goals in mind, gaining support from private donations, and in some cases, direct state and federal grants.
But the culture change movement isn't just about new architecture. It's about states adopting a new attitude toward regulation so that facilities can create more home-like settings and give elders more privacy and control over their environment.
Arkansas, for example, recently changed a rule that prevented residents from using air fresheners in their rooms. The state also got rid of a regulation that prevented nursing facilities from serving hot coffee from a cart early in the morning instead of making residents wait for a cold cup on their breakfast trays.
It's a lot of little things, says Carol Shockley, Arkansas director of long-term care. But they make a big difference in people's daily lives. Residents especially appreciate having more control over what they eat. "If a resident just hates broccoli," Shockely says, "a nursing home ought to be able to take it off his plate."
Another big issue affecting quality-of-life in nursing homes is staffing. Professional licensing rules typically require that one person performs housekeeping chores, another delivers meals and yet another administers medication and performs other medical tasks. Most residents don't have a single person who knows and cares about them, and turnover among low-wage health care workers is high.
That was the case in Arkansas, where trained nurses were not allowed to perform household chores. That meant residents could not have just one person looking after them. After a public rulemaking proceeding, the state modified that rule.
The Leonard Florence Center takes this a step further. Two to four health care workers assigned to individual apartments take care of nearly all of the residents' daily needs, including cooking, housecleaning, bathing and dressing. Trained nurses are also available around the clock.
Workforce training is another important piece, because few health care workers have had experience with what is known in the culture change movement as "person-centered" care. Instead, they've typically performed just one of the services needed to support a frail elder or disabled adult.
Massachusetts spent more than $200 million over an eight-year period to train and mentor health care workers in this new method of care, although that program has been cut back since the recession. Georgia, Kansas, Michigan, North Carolina, Oregon and Vermont made similar investments.
States have found other ways to push culture change in nursing homes. Rhode Island has developed a survey that grades facilities based on whether they look more like an institution or a home, whether they allow residents flexibility in their sleeping and eating schedules and how well they've reduced annoying noises. Colorado pioneered a point system that bumps up Medicaid reimbursement rates for facilities that provide more home-like settings. Oklahoma has taken similar measures. Arkansas offers a higher Medicaid reimbursement rate for so-called "home-style" nursing homes.
Advocates for the elderly and disabled admit that the new model for nursing home care can cost states more on their Medicaid bills, particularly if new construction or architectural changes are involved. With all the budget cutting states have had to do in recent years, and will continue to have to do, it may be difficult for states to make a lot of progress in this area.
Still, some are trying. Policymakers are mainly motivated by the human side of the issue. More than one politician has publicly vowed to improve long-term care for the elderly because of a promise to his own parents. "It's very hard to find anyone who hasn't had some connection to the issue," Wells says.
But states also have a fiscal interest at stake. While they are increasingly trying to find ways to allow elders to age in place and avoid expensive nursing home stays, there will always be a need for quality residential care for those who can no longer physically care for themselves. About 1.5 million Americans are receiving care in nursing facilities today and experts say just as many with equally serious medical problems try to live on their own because they so desperately want to avoid the institutions. As a result, many of them end up making repeated visits to local emergency rooms, which drives up medical costs.
That rings true to Rhoda Klein. She and her husband Ed both had serious medical problems resulting in multiple ER visits before moving into their apartment at the Leonard Florence Center last July. They knew at the time that Ed did not have much time left; he passed away two months later. Klein now counts the center's 24-hour staffers as friends and says they're helping her get through this tough time. "Ed wanted me to be taken care of," she says. "So we thought this would be a good place. And it is. It is my home."