March 1, 2007

Dr. Diane E. Meier, a geriatrician at Mount Sinai Medical Center in New York, is an expert on end-of-life care. So when her elderly parents needed long-term help at home with bathing, dressing and cooking after her father's stroke, she knew where to find assistance.

It was not through agencies in Manhattan that provide home health aides who are bonded, insured and certified. A year of custodial care from such an agency would cost her family $150,000, and in short order exhaust its savings because aides are not covered by government assistance unless patients are poor or fresh from a hospital stay.

Instead Dr. Meier turned to "a little list" of aides from the so-called gray market, an over-the-back-fence network of women. They are usually untrained, unscreened and unsupervised, but more affordable without an agency's fee, less constrained by regulations and hired through personal recommendation.

With 4.2 million Americans currently over 85 — a number expected to grow to 5.9 million by 2014 and then accelerate with the baby boom generation — the exploding need for long-term care is remaking the home-care industry, driving more of it underground. Gray-market hiring, fraught with risks, is a solution that middle-class families are turning to as they face the crushing burden of indefinite home-care expenses. But it is hardly the only one, as businesses rush to meet the needs of these families, the fastest-growing segment of the marketplace, who are intent on keeping their loved ones out of nursing homes.

Traditional agencies like the Visiting Nurse Service, founded to serve the poor with all manner of home health care, are opening divisions geared toward clients who must pay their own way. At VNS, 15 percent of clients now pay out of pocket, an 11 percent increase over last year, and aides trained in wound care and vital signs are also learning to interact with doormen, use espresso machines or escort a client to the opera.

At the same time, upscale agencies providing trained aides are proliferating solely for the private-pay market, as are national chains with more modest services — and more reasonable prices. These franchises are intended for today's consumer of home health care who need simple companionship, reminders to take medication, an escort to doctors' appointments and help preparing meals.

The largest of these chains, Home Instead, opened in 1994 with six franchises and now has 722. Their 37,000 part-time workers tend to the needs of 43,000 elderly clients. The advantage is a lower hourly fee — say, $15 an hour for nonmedical needs vs. $20 an hour for a trained agency aide — and the disadvantage a scramble to find more skilled help as a patient's health declines.
Policy experts worry that the new home health care businesses could put profit above quality.

"Consumers are always in jeopardy when there's an opportunity to make a lot of money," said Val J. Halamandaris, president of the National Association of Home Care, who 40 years ago was chief counsel to the Senate Committee on Aging. "Sometimes it works out beautifully, and sometimes it doesn't. But nobody's policing it; that's for sure."

Gray-market hiring, which Dr. Meier says most of her patients choose, is largely a financial decision to avoid the fees of home-care agencies, where perhaps $9 of the $20 hourly fee goes to the aide. In a gray-market arrangement, the aide might get $12, a 33 percent increase — although sometimes without benefits, worker's compensation or Social Security — leaving a family able to afford additional hours.

Many who have hired by word-of-mouth, without criminal background checks, and paid directly cite the loyalty of employees and their ability to work unfettered by regulations. Some agencies, for example, prohibit their aides from lifting a patient who has fallen without calling 911 or getting approval from a supervisor. That rule protects a client from being moved improperly, the aide from injury and an agency from liability. But some families shudder at the prospect of a loved one lying on the floor.
 
Many families worry more about temperament than tasks. Dr. Meier, and most of her patients say that entrusting someone with intimate care is less a reasoned decision than an intuition about character.

"You can teach someone how to turn a bed-bound person," Dr. Meier said, "but you can't teach the milk of human kindness."

Others say they chose gray-market employees if family members insisted upon someone of the same race. That is why Michael Elsas, president of Cooperative Home Care Associates in the Bronx, a worker-owned agency, turned to what he called "the German au pair network," rather than his own better-trained aides, for his mother. But as her Parkinson's disease progressed, Mr. Elsas said, the au pairs were not up to the task. He hired two aides from his agency, keeping one of the German women to placate his mother.

"The cost quadrupled," Mr. Elsas said, to $1,400 a week, from $350.

Referrals from corporate employee-assistance plans and also coverage under long-term care insurance are fueling the growth of the full-service agencies. Senior Bridge, for example, has expanded from New York City to 18 suburban and Sun Belt locations. And House Works in Boston, a boutique agency with fewer than 700 clients, has seen its gross revenue grow in six years to $9 million, from $590,000.

According to the American Association of Long-Term Care Insurance, a trade group for agents, more than one-third of the $63.3 billion in benefits paid in 2006 went toward home care. But policies differ in whether they cover only certified aides or a broader menu including gray-market employees or companions. And state insurance officials worry about the pressure to deny benefits as more policyholders, now in their 50s and 60s, begin to make claims.
The demand for home care aides throughout the industry is expected to outstrip supply. The Bureau of Labor Statistics counted 663,280 such aides in 2005, up from 577,530 in 1999, a tally that does not include gray-market workers. But the Census Bureau reports a stagnant number of women with little education, ages 25 to 54, the traditional labor pool for this occupation, just as the 85-and-over population is soaring.

Innovators in the field are looking for ways to reduce turnover, estimated at 40 percent to 100 percent a year by various agencies. This so-called churn results in an inexperienced and uncommitted work force.

The Service Employees International Union has been at the cutting edge of creating a more stable pool of workers. In New York, Local 1199 unionized 60,000 home-care employees. Unionized aides, many of them former welfare recipients, get a full array of benefits, rare in this industry, and opportunities to master English, study nursing or learn computer skills.

One of the union's newest offerings is a sort of consciousness-raising group, focusing on self-esteem and a sense of community among otherwise isolated workers. Last month, 13 aides from an agency in Queens shared their gripes with a facilitator. Many had been summoned from clients' homes just moments before the workshop. This sort of administrative confusion was typical, they said, and along with wages, which average $9.34 an hour nationwide, is their main complaint. But aides also said clients criticized their broken English, refused to eat their ethnic food, touched them inappropriately or assumed they would steal.

The Visiting Nurse Service is raising its pay scale to $10 an hour by 2008. Compensation will be tied to seniority, which VNS hopes will reduce turnover, and to the completion of specialty training in areas like Alzheimer's disease, which will provide career ladders for aides.

By all accounts, there is only one training program in the country for gray-market aides, at the Schmieding Center for Senior Health and Education at the University of Arkansas. There, Dr. Larry Wright, a geriatrician, designed a 119-hour curriculum for independent contractors, most enrolled by private employers. The course costs only $275, thanks to the subsidy of a benefactor.
Dr. Wright makes a case for buttressing the independent work force.

"If I saw agencies doing fantastic work, it would be one thing," said Dr. Wright, who says most agencies do little more than criminal background checks. "But there's not much value added and significant cost."

Even the best-trained agency aides wind up improvising in the privacy of a client's home. It may be against the rules to escort patients in a private vehicle or use their credit cards when shopping. But Mr. Elsas, of Cooperative Home Care Associates, has no doubt it happens.

"The system depends on the good judgment and integrity of workers who may be making $7 an hour," he said. "What's wrong with that picture?"

One effort to instill good judgment is a peer-mentoring program at Mr. Elsas's agency where senior aides make in-home visits to newcomers. But a home setting precludes the oversight found in nursing homes, tightened after the scandals of the 1970s. Setting national standards for agency employees, independent contractors and even family caretakers is one goal of a conference in March at the International Longevity Center in New York.

Sheila Baker, a geriatric social worker who has hired gray-market help for her mother, prefers informal oversight. At Mount Sinai's geriatric clinic, for example, aides escorting patients to medical appointments are always asked to leave the room long enough for the elderly person to speak freely about the arrangement. And at Ms. Baker's mother's apartment, even with a gray-market aide who was once a physician in the Philippines, Ms. Baker and her sister, a nurse, make unannounced visits.

Larry Minnix, head of the American Association of Homes and Services for the Aging, advocates national standards to prevent a repeat of the nursing home scandals in the home-care arena. And he speaks from personal experience.
 
Before they died, Mr. Minnix's in-laws were cared for at home by one beloved aide hired from the gray market. That aide, in turn, hired friends for additional help. One, who did yard work, had a criminal record. Another, with a family of nine, ran up exorbitant grocery bills because she was taking most of the food home. But his in-laws, Mr. Minnix said, were dependent on the original aide and fearful of changing the arrangement.

"This could happen to anyone," he said. "And it's something the country doesn't know what to do about yet."