Better Than A Nursing Home?

By Andrew Goldstein/Eagan With Reporting by Marc Hequet/Portage

Here comes the latest horror story from the ragged frontier of care for the elderly. Like a lot of aging baby boomers struggling with ailing parents, Peter Levang fretted 2 1/2 years ago when his mother Dolores, already plagued with mild dementia, became incontinent. He considered a nursing home--the classic option for those too sick to live alone and too needy to live with family. It seemed a dreary choice. Then Peter heard about a center just 15 minutes from his house. It was an assisted-living facility, part of a new way to live--and die--with dignity and freedom. These facilities, designed to help residents with daily tasks but not to provide skilled medical care (you still need a nursing home for that), are free of many of the safety and sanitary regulations that make nursing homes seem so much like mortuaries. By providing warm, inviting decor and individually tailored care, these centers can take much of the pain out of the awful decision to move a loved one from her home.

So Peter brought his mother to Alterra Clare Bridge in Eagan, Minn. Designed for people with memory difficulties, the center promised to allow Dolores, then 78, to live independently while it provided the extra support she needed. Staff members trained in memory impairment would help her eat and bathe; a "life-enrichment coordinator" would keep her active. The facility was stunning: from the outside, it looked more like a resort than a hospital. Inside, residents could gather in the "town square," with its beauty salon and ice-cream parlor, or relax by the fire in the living room, or skim through stacks of old National Geographic magazines. "You walk in and say, 'This is a place I would love to have my parent,'" says Peter.

Now he wishes he had looked a little more closely. Shortly after Dolores moved into the Eagan center in March 1999, at a cost of $3,450 a month, Peter's wife Bonnie, who visited regularly, noticed that Dolores' only "life enrichment" was watching television in her rocking chair. Nor was Dolores receiving the help she needed in visiting the toilet. On several visits, Bonnie found her mother-in-law's feces smeared on the bedroom floor and walls, in Dolores' hair, on her face, on her toothbrush. Then Dolores began to fuss incessantly with her feet. The Levangs thought they had arranged, through the center, for an outside service called Happy Feet to provide pedicures. But Happy Feet never received the contract. (The center's operator, Alterra, based in Milwaukee, Wis., insists that its manager did fax it in.) For eight months no one cut Dolores' nails, which grew so long that they curled over the tops of her toes and began to dig into the skin underneath.

The Levangs then began to hear alarming stories from other residents' families. Tina Sowells' grandmother Freda Trimble, then 89, had to be hospitalized after an anxiety attack because for several days she hadn't been given her necessary dose of Xanax. Fran Firth complained that her mother, Grace, then 74, had been left lying in her feces for several hours until her skin peeled; the company says her diaper was changed regularly. "We could not have been more disappointed," says Bonnie Levang.

Fueled by Wall Street speculation and the rapidly aging U.S. population, assisted-living residences in the past few years have popped up in nearly every suburb and city. Today there are at least 10,000 facilities, 90% of which have been built in the past decade, according to the American Seniors Housing Association. They house nearly 800,000 elderly Americans. But the boom has been accompanied by widespread allegations of substandard care, neglect and even preventable death. Year after year, Washington politicians take aim at problems in nursing homes, often proposing scores of new guidelines for an industry that is already heavily regulated. Yet Congress has thus far largely ignored assisted living, which receives no federal oversight whatsoever.

Last week a special government investigation disclosed that the number of nursing homes cited for abuse violations has doubled in just the past five years, prompting Congressman Henry Waxman, a California Democrat, to propose tougher staffing and disclosure rules. These may indeed be necessary. But the soon-to-be-released findings of the first national study of assisted living suggest that staffing problems and neglect in these facilities may be just as acute as in nursing homes. The Department of Health and Human Services (HHS) report will show that 32% of assisted-living residents (who are typically much healthier than their nursing-home counterparts) had been hospitalized in the previous year, a rate higher than for residents of nursing homes. And according to the report, most assisted-living staff do not have a basic understanding of the aging process: the vast majority thought, for example, that incontinence, confusion and depression were normal signs of aging rather than potentially reversible conditions. "There's absolutely no doubt that these facilities are more dangerous than nursing homes," says Karen Love, executive director of the Consumer Consortium on Assisted Living.

Underlying the problems is the very freedom from regulation that makes assisted living so attractive. This has allowed operators to cater to the aesthetic desires of their customers--to sport plush carpeting where nursing homes have only linoleum--and still keep costs down. The average nursing home, funded largely by Medicaid, costs nearly $4,000 a month. The average assisted-living facility, where residents typically pay out of their own pocket, costs about $1,800 a month. Disparities in regulation, though, leave seniors vulnerable to huge variations in everything from the quality of food to the number of registered nurses available. Most assisted-living centers do not even have a full-time nurse on staff; nursing homes of comparable size have four or five, which is the major reason they cost so much. Yet studies show that nationwide, on average, people in assisted living actually receive more medication than do patients in nursing homes. They may not be sicker, but they still need plenty of attention.

It has taken a series of tragedies for public officials to begin to notice. In California regulators moved to revoke the licenses of nine facilities run by Regent Assisted Living Inc. after Lucille Giroux, 79, bled to death in her rocking chair at Sunnyside Court in Fremont. According to the state's investigation, she twice pressed her call button and no one came; Regent says no call for help was made. In Falls Church, Va., a 93-year-old woman was killed in May when, after she fell down outside, her facility's van ran over her. Lawmakers in Virginia are re-evaluating the state's regulations.

The industry's problems are partly a case of growing too big too fast. Assisted living first became popular in the late 1980s, but it wasn't until the mid-'90s--when assisted-living companies went public--that the industry exploded. Wall Street investors, eyeing the impending retirement of millions of baby boomers (the number of elderly needing long-term care is expected to double over the next 20 years, to 14 million), fell all over themselves trying to catch a piece of the boom.

By the summer of 1998, Alterra was opening a facility every three days, quickly becoming the largest U.S. assisted-living provider. The memory-care center in Eagan, a fast-growing suburb of St. Paul, Minn., opened that August; in 10 months it filled its 52 beds. Glossy brochures promised "peace of mind, for you and your loved one." Families said they were told there would be a 1-to-7 ratio of staff to residents. But the primary caregivers, who were often paid less than $9 an hour, didn't just have their seven or so residents to care for; they also had to clean the hallways and bathrooms, set and clear the tables at mealtime and do laundry. The company says it takes pride in having its staff provide such "holistic" care. Nonetheless, turnover was high, and since training was spread out over six months, some caregivers never received key lessons in patient transfer and behavioral control. "I had so little time for my residents," says Laura Schad, 50, who quit her job as a resident assistant at the Eagan center after a year. "I was passing out 25 medications a day. I had very little training. It was dangerous."

Early in the evening of Jan. 1, 2000, a nearby hospital telephoned the Eagan center to inquire about a resident brought in earlier that day; no one answered the phone. The hospital called the police, who had become accustomed to dealing with the Eagan center. (According to police records, aides there had called for emergency assistance 58 times in the previous year, sometimes for simple patient-care issues.) An officer was sent to the facility, where an aide who spoke almost no English answered the door. She said she was a cook and had not been taught how to use the phone. The officer found just two other staff members, neither of whom spoke English well. Alterra maintains that eight resident assistants were on duty that evening.

That incident, along with complaints by Levang and other residents' families, prompted Minnesota attorney general Mike Hatch to sue Alterra for consumer fraud. The suit was settled, with Alterra agreeing to pay for an outside monitor. The center hired more staff, including a housekeeper, and modified its brochure, replacing the phrase "professionally trained" staff with "trained" staff. But for many of its other Minnesota facilities, Alterra insists having staff provide "holistic" care is effective.

"We could have done a better job," says Alterra president Steven Vick about what happened at the Eagan center. He says such problems are rare. "These events are disappointing, but we work every single day to correct them." Karen Wayne, president of the Assisted Living Federation of America, one of the industry's main trade groups, says problems such as those at the Eagan center have been exaggerated. "When you look at the number of people we serve," she says, "these are isolated accidents and tragic events."

The "tragic but isolated" rebuttal has been the industry's mantra as it has tried to stave off government regulators. The argument has worked in the past, in part because there are few national statistics on the frequency of problems at assisted-living facilities. The most comprehensive study, a 1999 survey of assisted living in four states by Congress' General Accounting Office, found that 27% of surveyed facilities had been cited for five or more quality-of-care violations in a two-year period and that 11% had been cited for 10 or more violations. HHS's new national study will point to more evidence of widespread neglect: 26% of residents surveyed who needed help with toilet use sometimes didn't receive it.

To the health inspectors called in when problems arise, the incidents are anything but isolated. "These facilities are chronically understaffed, and the staff is chronically undertrained," says Kary Hyre, long-term-care ombudsman for the State of Washington, whose office gets about 1,250 complaints a year. The HHS study found that 25% of the facilities that purport to offer the highest level of services had only 1 caregiver for every 20 residents on the 3 p.m.-to-11 p.m. shift and just 1 for every 34 residents overnight. "Once the facilities are built, their main expenses are staff and food," says Catherine Hawes, the national study's lead researcher. "So when the companies squeeze, that's what gets shortchanged." Hawes also points out that most states require more training for manicurists and dog groomers than they do for assisted-living caregivers.

Trade-group chief Wayne admits that during the industry's boom, "many companies did not have time to focus on the infrastructure," including training of staff. But the growth, especially in big cities, happened so quickly that many facilities could not fill their beds. So companies have put on the brakes: construction is at its lowest level in five years. This has allowed facilities, says Wayne, "to focus on what's important." But the slowdown has left many assisted-living companies short of cash. And allegations of neglect have sparked a surge of liability lawsuits, driving up liability-insurance costs as much as 800%. Wall Street, in response, has fled. Alterra's stock, as high as $33 a share in January 1999, now sells at 23[cents] a share. Two other assisted-living companies filed for bankruptcy earlier this year.

To survive, some facilities are taking in or holding on to sicker residents and increasing the fees they charge to serve them. Sunrise Assisted Living, one of the few companies whose stock price has remained steady, told its investors it is now marketing to "the frailest of the frail." This is welcome news for many residents and their families who believe that the ability to "age in place" is a blessing, even if their care needs are changing. Carrie Cyphert, 89, who suffers from advanced Alzheimer's disease, has been in an Alterra memory-care facility in Portage, Mich., since September 1999 at a cost of $42,300 a year. In July 2000 state health inspectors cited the Portage facility for several violations, including medication errors and insufficient staff. The state tried to force Cyphert and nine other residents to move to higher-care facilities, contending that if they didn't move, Alterra would in essence be operating a nursing home without a license. Several of the families sued. Says Cyphert's daughter Judy Petrick, who was pleased with the care her mother was getting, regardless of the regulatory violations: "I didn't think the state had the right to tell me or anybody else where my mother could live if I'm paying for it."

Therein lies the dilemma for those who wish to regulate assisted living. The vast majority of residents pay for their own care, and according to industry surveys, most are satisfied. Even at the height of turmoil at the Eagan center, several families wrote thank-you letters for the "wonderful" and "tender" care and for providing a place "just like home." So how to justify government intrusion? Michigan decided it couldn't, and the state swiftly passed a law that allowed Cyphert and all other assisted-living residents to stay as long as they wish if the family, the doctor and the provider all agree to it. "Isn't that wonderful?" beams Alterra president Vick. "Free choice has risks, but as long as the operators and residents agree, I think it's a win-win for America."

As states across the U.S. rewrite their rules governing assisted living, most, like Michigan, have deferred to the wishes of the industry. Many of Kentucky's new regulations apply only to facilities that have yet to be built. Alabama has just six inspectors to oversee more than 300 assisted-living centers. In Minnesota attorney general Hatch proposed a consumer-rights bill that would require facilities to disclose fully such key information as staff training and treatment protocol. But even that bill was watered down so much--it includes no required training or inspection--that Hatch now admits that "it won't do much."

Consumer advocates say their best hope for enhanced regulation may be Medicaid, the government assistance for poor elderly that is widely used to pay for nursing homes. Forty states now allow Medicaid to be used for assisted living, but providers have been reluctant so far to accept the money. Their need to fill beds, however, has made them more receptive--and the change has caught the eye of federal lawmakers. Last week the Senate Special Committee on Aging brought together representatives from both the industry and consumer groups and asked them to agree on ways to improve care.

Providers tend to respond to incidents like the one in Eagan by arguing that residents are always free to choose someplace else and move. But that isn't so easy for someone with Alzheimer's or dementia. The disorientation of moving can often be more harmful than simply staying put, even in a heavily understaffed facility. The Levangs kept Dolores at Alterra for as long as they could stand it. In February 2000, after 11 months, they gave up and moved Dolores into her own apartment with a full-time aide. Now 80, Dolores spends most of her time reading romance novels and doing crossword puzzles. She goes for lengthy strolls daily--without using her walker.

Alterra isn't doing nearly so well: the company, seeking to improve its cash flow, is selling more than 60 of its 481 facilities. But the care at the Eagan center appears to have improved significantly. A recent visit found 12 smiling women singing songs with a local preacher, two men sitting by the fireplace playing cards and the line to the beauty shop out the door. Families were raving about all the personal attention. There are now 32 residents--and, during the day, six full-time caregivers (an impressive 5-to-1 ratio). Good care, it seems, can't be done on the cheap.

--With reporting by Marc Hequet/Portage

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