An assisted-living residence is a whole lot better than a nursing home. But it's hardly a panacea. Here's what you need to know before choosing one.
Betty Ann Dresser wanted badly to trust the marketing director at Village Retirement Communities, an assisted-living company in Greenville, R.I. Her father, Howard Wyllie, suffered from both diabetes and Alzheimer's disease and had recently been discharged from another assisted-living facility that no longer had the resources to care for him. Dresser needed a new solution and she needed it fast. So when the first facility suggested she give Village a try, she called right away.
Dresser knew that her father needed lots of attention. He required a strict diet, as well as assistance with taking his medications. And because his Alzheimer's was well advanced, he needed what the industry indelicately calls a "lock-down" facility — a building where residents can be locked in to prevent wandering. Dresser says the marketing director foresaw no problems with Wyllie's special needs and she recommended he move into the Village at East Farms, a lock-down facility in Waterbury, Conn. She wrote down some figures on the back of an envelope explaining the fee structure, Dresser says, and the two sealed the deal with a handshake.
Or so she thought.
Problems arose just a few days later as Dresser was moving her father into his new residence. Not only did the marketing director present her with a contract that raised the fee by a couple of hundred dollars a month, but it became clear she had never told the head nurse or the kitchen at East Farms of Wyllie's medical condition. The facility wouldn't, in fact, cater to his dietetic needs and officials insisted that his prescriptions be reissued in a form that was easier to administer. Six days later, the facility called Dresser and said her father was running a fever. He would have to go see his personal physician.
When Dresser's sister arrived at East Farms to collect her father, she found him sitting naked in his own feces on the edge of his bed. No one helped her clean him up or dress him. And when she got to the doctor's office, Wyllie's physician said he wasn't running a temperature and that his sugar levels were fine. When the doctor called the officials at East Farms to tell them that Wyllie was in good health, he was informed that his patient wouldn't be allowed back into the facility. "When my brother-in-law called the head nurse," Dresser recalls, "she said, 'He's your problem now.'"
Dresser and her father's experience is an extreme one, there's no doubt about it. But their story raises a number of issues that, unfortunately, have become all-too-common in the sprawling, multibillion-dollar assisted-living industry. Lack of adequate care, broken marketing promises and a dearth of federal regulation are just a few.
Not all assisted-living residences, of course, suffer these problems. If you keep your eyes open, read the fine print and adjust your expectations, it's certainly possible to place your loved one in a facility that lives up to the industry's promise — providing a more comfortable, independent living experience than a standard nursing home. But as the financial pressures build on this fast-growing industry, problems are likely to proliferate. And in order to make an informed decision, you need to know what to look for. Here are 10 things that your average assisted-living director may not tell you.
1. We promise more than we can deliver
The biggest misconception consumers have about assisted living is that once their loved one is accepted into one of these facilities, he or she will live there for a very long time — perhaps avoiding a nursing home altogether. But nothing could be further from the truth. In fact, the average resident stays only two years. Why? The assisted-living business model was never intended to provide care for frail and sickly seniors. When they get that way — as they inevitably do — many facilities will insist that they leave. In fact, state law often requires it.
To the extent that the industry acknowledges there's a misconception, it tends to blame consumers. "You can tell people (the rules) over and over again," says Whitney Redding, a spokesperson for the Assisted Living Federation of America. But when faced with family crisis, she insists, they often don't listen.
Our reporting suggests a more common reason for the confusion: marketing. As in Dresser's case, assisted-living companies — struggling to fill their beds — often suggest that their goal is to adjust to your loved one's needs, even if they become substantial. It used to be called "aging in place," but after pressure from consumer groups, the industry now discourages that phrase. Buzzwords aside, the message remains the same.
That is, until you read the disclaimer. Scan Altera Healthcare's (ALI) Consumer Information Page and the message is quite different. It says: "At times, medical condition, state regulation or failure to meet your obligations under the Resident Agreement dictates a move from our residence." In other words, if you require skilled nursing or need too much personal assistance, management can kick you out. So much for "postponing or eliminating" that move to a nursing home.
Even if a facility wants to keep your loved one on, the state may require he or she be moved to a nursing home. Consider the case of Marcia Gutterman, whose mother barely got settled into her Florida assisted-living residence before she had to move out. After less than two months Theresa Chasan fell and broke her hip, and according to Florida state law she had to move to a nursing facility. In Florida, an assisted-living facility with a basic license isn't allowed to tend to a resident who is bedridden for more than seven consecutive days.
Exceptions are made in terminal cases when hospice care is brought in. But the fact remains, if your dad's health deteriorates sharply, you run the risk he will be asked to leave just when you can least cope with it. How can you protect yourself? Read the resident contract very carefully and have a lawyer look it over before you sign. That way you can be prepared for an emergency situation.
2. We can raise our prices at any time
Get ready for sticker shock. The average assisted-living complex charges $2,000 a month for basic services and some of the pricier residences can run as high as $6,000. Moreover, while Medicare and Medicaid cover nursing-home care, they don't pay for assisted living. (There are four states where a Medicaid waiver can be granted, but funding is limited and hard to come by.) Seniors who are trying to work out a budget also need to realize that a complex can raise its prices at any time — and with little notice — warns Meredith Coty, the state ombudsman in Oregon.
The problem is often exacerbated by the industry's headlong growth. When a new facility opens it will often offer consumers a teaser rate to help fill the beds. Then, once the rooms are filled, it will hike its prices. Another tactic is to charge residents a basic monthly rate to cover a flat set of services and then tack on additional charges for care not included in the basic list.
When Lisa Lewis moved her father into Alterra's Sterling House in Ponca City, Okla., she was promised the fee would only increase incrementally as her salary rose over time. But less than two years later, her father was forced out of his residence after a new assessment program was instituted adding an additional $800 to his monthly bill — a burden the family couldn't afford. Alterra charged him every time he forgot to flush the toilet or when he needed help changing his clothes. He was even assessed because the staff had difficulty understanding him since his dentures didn't fit properly. The move back to Lewis's home proved traumatic for her father and he died less than two months later. When we called Alterra for comment, we were told the company doesn't discuss individual residents.
The key in a case like this is to ask beforehand what's covered by your contract and what's not. If your parent has special needs, count on paying an additional fee to have them taken care of. If the facility charges for something as silly as flushing the toilet, you might consider moving to the competition.
3. Our staff has very little training
According to Jeff Goldman, a former Manor Care (HCR) executive in charge of development and marketing, most assisted-living facilities were never designed to accommodate frail seniors or people with major health problems. The financial models, he says, were set up with "old ladies in fuzzy slippers" in mind.
Chains like Sunrise Assisted Living (SNRZ) and Alterra have tried to adjust by offering services to residents with higher degrees of "acuity." But even the best and most expensive assisted-living complexes man their facilities with mostly unskilled workers. The majority of the staff are personal aides working for close to the minimum wage. The folks who distribute medication need as little as 16 hours of classroom instruction in some states to qualify for the job. Even in Virginia, which is known for its strict rules, the training requirement jumps to just 48 hours.
Karen Love, a consumer advocate who works with the Consumer Consortium on Assisted Living, can personally attest to what a problem this can cause. During the mid 1990s she worked as an administrator for Sunrise Assisted Living's Arlington, Va., facility. She resigned after she realized she couldn't run a safe residence under the corporation's strict rules and staffing constraints. Her No. 1 complaint was that the caregivers had such little training. "You can't just throw (staff members) into a room and show them a tape," she says. "That's not meaningful training."
The incident that pushed her into consumer advocacy happened back in January 1995. One evening, a resident was found unresponsive in her wheelchair and the staff members were flummoxed. Rather than call 911 immediately, they first tried to perform a barbaric version of CPR. Then, thinking she was dead, they left the resident alone in her room for nearly an hour before help was called. "They freaked out," Love says, and "acted the way untrained people would." The resident died later that evening in the hospital.
Love blames an industry that expanded too quickly, growing at a compounded annual rate of 10% through out the 1990s. The pressure to make each new building profitable has been tremendous. A number of companies, such as Balanced Care and Alterra, admitted publicly that they struggled to meet debt obligations. It's clear looking back that in a rush to meet expected demand, many assisted-living operators pursued ill-conceived business models and failed to create the management infrastructure needed to operate a service-intensive business successfully. This includes keeping up with necessary infrastructure and support.
Asked to comment, a Sunrise spokesperson said, "We provide a safe and secure environment for residents and staff residences adequately to meet requirements enforced by each state and to meet our own guidelines."
4. Medication errors are common and our pharmacy charges too much
Trusting an assisted-living facility to properly dispense your medication is a bit like playing Russian roulette. Errors are common. While Lisa Lewis's father lived at Alterra's Sterling House, the health department found the facility failed to administer his ordered medications on 20 different occasions during the last four months of his stay. And during 15 of the 17 months he lived there, records indicate that the company lapsed in ordering or obtaining his medications.
Coty, Oregon's ombudsman, was hardly flabbergasted when we shared Lewis's story. "There is an epidemic (breakdown) in the medication administration system," Coty says. She also warns that pharmacies affiliated with assisted-living facilities will often charge residents more for prescriptions than an independent druggist would. When possible, residents should continue to use their own drugstore. But don't be surprised if your facility requires medications to come in a certain format, such as bubble dispensers, that may only be available through an affiliated pharmacy.
5. We face scant regulation
Al Schmidt's wife suffers from Alzheimer's disease and when he could no longer care for her on his own, he moved her into an assisted-living facility that appeared safe and loving. Only once it was too late did he realize that his spouse was better off at home.
While residing at Sunrise Assisted Living's Northville, Mich., facility, Ruth Schmidt was sexually abused by another resident who also suffered from dementia. This was discovered when an aide walked in on the man performing a sex act on Schmidt. The aide was instructed by the administrator of the facility not to report the incident to authorities, not document it in their files and not to tell Al Schmidt. The husband only discovered what had happened after a former employee felt a pang of guilt and called him at home to confess what she knew.
The facility initially denied the occurrence. But after the Northville police department investigated for criminal activity, Sunrise claimed that Ruth Schmidt — who can't think rationally — chose to participate in consensual sex. According to a state report, the administrator regrets trying to hide the incident, but chose not to tell Schmidt in an effort to spare his feelings. For his part, Schmidt isn't trying to conceal anything. "I want the world to know what goes on and I want it stopped," he says. A Sunrise spokesperson says the company doesn't comment on individual residents.
Unfortunately, Schmidt learned he had very little recourse against Sunrise. Since the facility didn't initially report the incident, there are no tangible records. And unlike nursing homes, which are federally regulated, assisted-living residences tend to face light state regulation. Marguerite Schervish, the long-term-care ombudsman for Michigan, says assisted-living facilities in her state, by law, have no requirement to protect vulnerable people other than what might be typically provided under a landlord/tenant relationship. Conversely, she says a nursing home would be liable and the state would take an accusation of sexual abuse in a licensed facility very seriously.
"It is up to a jury to prove without a reasonable doubt that she was abused, not the state prosecutor," Schervish says. Also, since assisted living isn't regulated by the federal government, rules and regulations differ by state. For information on your state's rules, check with your local department of aging or you can browse through the National Center for Assisted Living's state regulatory review.
6. You're practically on your own at night
A lot of seniors are like Elsie Lox. She moved into Atria Retirement & Assisted Living's Cranford, N.J., residence precisely because she wanted to have someone to watch over her in the evening. Only after settling in did she discover she was more alone than she had hoped. "At night, everyone went home and no one knew what was happening," says Lenore Lox, Elsie's daughter-in-law. The residence — which has more than 200 residents — employed just one aide to cover the night shift. Not exactly the security and care Elsie felt she was paying for.
Realizing she couldn't count on Atria, Elsie wore an emergency call button that contacted an outside service. The rest of her care eventually fell upon the shoulders of family. Lenore Lox and her husband spent countless evenings driving the 45 minutes back and forth from their home to the facility every time Elsie got a stomachache, felt dizzy or fell out of bed. The only help the night aide was trained to provide was placing a call to the ambulance.
Goldman, the former Manor Care executive, says the relatively healthy seniors that assisted-living centers were designed to treat don't really need 24-hour nursing care. But as the sector exploded from its infancy in 1981 to a $15.7 billion industry in 1999, beds needed to be filled and facilities started accepting people with more and more acute needs. The problem was, they couldn't increase staffing because that would inflate costs further, Goldman says. And they couldn't overtly raise rates because they were already sky high.
So how do you protect yourself or your loved one from moving into a poorly staffed facility? Insist on taking an extensive tour at different times of day to be sure there is adequate staff. It's rare that you would find a residence that's fully staffed in the evenings, but some are better than others. Observe whether the aides know the residents names and ask how many residents each staff person is responsible for. Don't be shy. Step right up and start talking to the people who already live in the residence. They'll tell you if they get enough service and attention.
7. You may have to hire a private-duty nurse, too
A few months ago, Heather Oppenheimer received a phone call. The administrator at Cincinnati's Evergreen Retirement Community wanted to meet and discuss her mother-in-law's care. Oppenheimer was told that her mother-in-law, who suffers from Alzheimer's disease, needed help with toileting and bathing. This was more care and personal attention than the assisted-living facility was willing or able to provide.
The administrator recommended that Oppenheimer hire additional help from 7 a.m. through 9 p.m. — in other words, for most of the day. If she refused, her mother-in-law would be forced to move into a nursing home — only the one on the same campus was already full. Oppenheimer decided finally to comply with the facility's costly request. Now her mother-in-law is being tended to by a home-care nurse who costs an additional $100,000 a year.
Oppenheimer's experience is far from unique. "Once we can't keep up with all of (a resident's) needs, we give them the option to get more help or move to a nursing unit," Janet Lence, an assistant administrator at Evergreen, says. Although a facility will often offer a long menu of services, that doesn't mean your loved one is entitled to all of them. Each resident is allotted a certain amount of personal time and once that time is up you either have to pay more or get outside help.
Connie Rosenberg, president of the National Association of Professional Geriatric Care Managers, says you need to factor those costs into your budget if you plan on keeping your loved one in an assisted-living facility for more than a couple of years. The last thing you want is to expend the family's resources on the basic service and then be left with few options for care, she says.
8. We stop spending once our beds are full
From our research, we found that the newer the facility the better the maintenance and care. Why? Companies need to fill their beds. When shopping for an assisted-living residence, consumers often pay close attention to the appearance of a facility. So it's in a company's best interest to maintain the grounds and make their current residents happy.
Lenore Lox found that her mother-in-law's assisted-living facility deteriorated significantly during the seven-plus years she lived there. First, a major corporation bought out the facility. Then, soon after the property changed hands, a new administrator came on board who didn't manage the operations with the same firm hand. Dr. Jon Pynoos, of the University of Southern California's Leonard Davis School of Gerontology, says consumers need to be very vigilant to avoid problems. "(It's) easy (for a facility) to slip into doing a very poor job," he says. "All it takes is an administrator to not know what she is doing."
To make sure your facility is keeping up to snuff, ask to see its most recent inspection report. Although each state varies, most conduct a full survey once every two years and document any problems, ranging from faulty paperwork to safety concerns and general cleanliness. This document should be available at the front desk. If it isn't, consider it a red flag.
9. Practically anyone can hang an assisted-living shingle
Steve Sheley, a registered nurse who owns Freedom Oaks, a small assisted-living residence near Orlando, Fla., says he was surprised by how easy it was for him to open his facility. After taking a one-week class, he was ready for business. You too can open a facility. It doesn't matter that you have no medical or industry experience. Getting a license, which you don't even need in certain states, is remarkably simple. In Florida, a state known for protecting the elderly, an administrator need only take a 26-hour course and pass an exam before setting up shop. The facility itself receives a license upon physical inspection, where state officials check for safety and cleanliness.
Consumers also need to realize that assisted living is just a marketing phrase, not a regulatory term, says Alison Hirschel, an elder-law specialist at the Michigan Poverty Law Program. Almost any building catering to the elderly can use this title, though their services may range from a room with a call button to a full-service facility. Hirschel also confirms that there have been nursing homes in Michigan that were shut down for various reasons, but were allowed to reopen under the assisted-living shingle.
10. Check your dignity at the door
The guiding philosophy behind assisted living is to treat seniors with respect and help them maintain their dignity. After all, that's the major reason people choose one of these facilities over a nursing home. But while some facilities excel at this, others fall short. And as the string of examples above shows, it's easy for a frail senior citizen to get into a situation where dignity and independence are compromised.
Sometimes the breach has more to do with civility than health issues. Virginia native Nancy Jean complains that staff at her mother's small residence nearby speaks to both the residents and visiting families rudely. The residents are relegated to the upstairs bedrooms and hallways except when eating in shifts in the small dining room. There are also restrictions placed on the amount of clothing they are allowed to keep at the facility. Jean says staff members will go through residents' closets and throw out items they feel are extraneous.
Most upsetting to Jean's mother is that she isn't trusted to hold on to her own over-the-counter remedies such as Tums and Gas-X. It embarrasses her to ask for them so oftentimes she simply goes without. "I say they have taken her dignity away," says Jean.
The best thing to do, obviously, is avoid such a facility altogether. And the only way to do that is to take several tours (preferably at different times of day) and talk to the residents themselves. "If a facility is unwilling to address the concerns, you need to start looking for another facility," says David Kyllo, a vice president at the National Center for Assisted Living. For a complete list of questions to ask during your informational tour click on the National Center for Assisted Living's Web site.