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A System Ignored and Frayed
Quality of life - and sometimes the safety - of those most vulnerable is put at risk
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Published: February 6, 2005
The warning sound was so loud that Stephanie Phillipi could hear it as she pulled into the driveway.
It was her husband Doug's ventilator alarm, screeching to let someone know that the tube he needed to breathe had fallen from his throat. Doug Phillipi, robbed by Lou Gehrig's disease of the use of most of his body, was slowly smothering and could not move a finger to save himself.
A few feet away, the home-health worker trusted to take care of him sat with headphones on his ears - fast asleep.
Stephanie Phillipi didn't report the worker's actions to the state - she didn't know that there was a way she could. Instead, she fired the man and hired another nursing aide. Other aides would follow over the years. Sometimes, a bad caregiver would be dismissed; at other times, a good caregiver would leave for a better job.
It's an all-too-familiar situation for families across the state who want to care for their elderly or disabled loved ones at home. For many patients and families, home-health care is a revolving-door system of uneven care with little support from the state in ensuring quality.
A Winston-Salem Journal investigation of home-health care in North Carolina has found that:
Fewer than 200 of the 1,200 agencies licensed to provide home-health care in North Carolina are inspected on a regular basis.
There were almost 400 cases of health-care workers abusing, neglecting, stealing from or otherwise misusing the trust of patients between January 2000 and July 2004.
Home-health agencies - unlike nursing homes, adult-care homes and mental-health group homes - are free to hire people listed on a state registry of workers who have committed such offenses against patients.
Home-health agencies must do a criminal-background check on their nurse aides, but are not barred from hiring someone with a criminal conviction.
Decisions about the care of the elderly and disabled are among the most important that a family -or society - ever faces. They can also be among the most expensive. In North Carolina alone, Medicare spent $365 million on nursing-home care and $260 million on home health care in 2001.
Carmen Hooker Odom is the secretary of the state Department of Health and Human Services, the agency responsible for oversight of home health care. She acknowledged in a recent interview that the quality of home health care is "spotty" and that it's difficult for patients and their families to tell the difference between good and bad providers.
"We all have to face that the delivery of care in people's homes is, first of all, what most people desire and, secondly, what's going to end up being the standard of care," she said. "And we've got to get those standards of quality ... equal or better than in any other kind of setting."
Hooker Odom said that her department is taking steps to help correct some of the problems - including asking the General Assembly for five more inspectors.
But families such as the Phillipis, and other advocates for the disabled and aging, say that much more needs to be done.
Doug Phillipi, a chef by trade, was also a talented musician and painter in his spare time. His diagnosis was devastating to the family, Stephanie Phillipi said, but they were determined to keep him out of a nursing home. They wanted him to stay in their home, where he could share in the lives of his three sons.
The search for quality caregivers has been time-consuming and sometimes far-reaching, Stephanie Phillipi said. The family lives in Carrboro, and has gone as far away as Fayetteville to find a trustworthy nurse aide who was also willing to accept a relatively low wage and sometimes difficult working conditions.
"You have to ask, who would be willing to go into this?" Phillipi said. "And the answer is, someone who's remarkable or someone who can't get work anywhere else."
Kimberly Sheehan, whose family was involved in three years of legal wrangling after her step-grandfather married the nurse aide who had cared for him, put it another way.
"Home health care is frightening," she said. "It's absolutely frightening what can come into your home."
20,000 patients in N.C.
On any given day, there are about 20,000 patients in North Carolina under some form of home health care, according to estimates from the Association for Home and Hospice Care of North Carolina, which is based in Raleigh. That number is expected to increase as the baby-boom generation ages and people live longer.
At its best, home health care gives patients a chance to live with dignity in their own homes, close to friends, family, and the larger community they have come to know.
The term "home health care" describes a variety of services to the elderly and disabled. At its most basic level, home care provides companionship and such simple tasks as housecleaning. More specialized agencies provide such advanced care as physical therapy or speech therapy.
Providers range from such large organizations as Wake Forest University Baptist Medical Center to small, family-run agencies. Medicare pays for the bulk of the home health care - more than $12 billion nationwide in 2003 - followed by private insurance and out-of-pocket payments by families. According to statistics from the Legislative Commission on Aging, the typical home-health-care patient in North Carolina is 81 years old, female and economically needy. She struggles with at least two functions of daily living, such as bathing or housecleaning, and is at-risk of malnutrition.
Medicaid pays for home health care at a rate starting at $14.40 an hour. Medicare reimburses home-health aides at a rate that starts at $44.76 an hour per visit for patients who need only a few visits. That rate often includes include additional health services, according to the U.S. Centers for Medicare and Medicaid Services. That figure can also vary based on such factors as the wage index in the area where care is delivered. Nurse aides across the state are paid an average of $8.28 an hour, with the remaining money going to the agencies for other expenditures and profits.
Home health care grew dramatically nationwide from the mid-1980s to the mid-1990s, with more than 6 million patients receiving home health care in 1996.
But a series of Medicare-fraud scandals, primarily in the South and Southwest, led to financial reforms, starting with the Balanced Budget Act of 1997 that cut down Medicare spending on home health and drove hundreds of providers out of the business. That has been the only significant reform in the industry to date.
Unlike the nursing-home industry, which experienced a wave of reforms after some deplorable conditions were brought to light more than 30 years ago, there hasn't been a similar widespread effort to deal with potential shortcomings of care in the home-health industry.
Nor has there been much of an outcry to do so. Home health-care victims may be perceived to be less vulnerable than patients in institutions, said William E. Lamb, the director of public service for the UNC Institute on Aging.
"When you're in an institution such as a nursing home, you are completely dependent upon them for your care and support," he said. "When you're in your own home, you're there because you have a level of independence or a family member is there for you. So when bad things happen, there's an assumption that there is somebody there who can handle the situation."
In some cases, patients may not complain about a bad caregiver because they fear retaliation.
And there may be another reason, said Helen Savage, the advocacy director for the North Carolina chapter of AARP. Patients worry that complaining about home health could ultimately land them in the very place that they were trying to avoid - a nursing home.
Doing it right
Phil Driver's story - a success story for home health- demonstrates the difference that home care can make when it's done right.
Driver was paralyzed after a single-engine airplane crash in Alamance County in 1989. He bounced around in a couple of different nursing-home and rehabilitation facilities over the next 10 years. His last stay was in a Mooresville nursing home, where he said he watched 11 elderly roommates die.
Driver wanted a chance to live an independent life, but his doctors weren't sure that he was ready to move away from the round-the-clock care he got in the nursing home.
He considered it a defining moment in his life: The nursing home offered him security but little freedom; home health was a risk for someone in his condition, but it offered him a better chance to live life as he wished.
"I had a decision to make," he said. "Either I lose what little dignity I had, or die in someplace I could call my own."
Driver now rents a 1,200-square-foot house not far from his family in Burlington and receives eight hours of home care a day. The man who was ready to die is able to use a computer and operate a television and a telephone with a pencil strapped to a wrist cuff. He also paints, using his mouth.
"So far it's the best quality of life I've had since my accident," he said. "I don't think I would have survived in a facility.
"Having this freedom I have in this home-care situation," he said, searching for words, "I'm back in the mainstream of life."
Pete Clary has seen both sides of home health care. He's the father of a 12-year-old girl with a developmental disorder, and home health has given him the opportunity to take care of her needs in the comfort of the home she knows.
Clary is also Forsyth County's chief public defender, a job that involves making sure that the county's poorest people have legal representation when they come to court.
Because nurse aides are paid so poorly, they often come through his office when they get in trouble, he said. From their jail cells, he has heard them say that it won't be hard to get their nurse-aide jobs back once their court cases are resolved.
And that makes Clary frustrated.
"You've got the most vulnerable in many cases being taken care of by the least responsible," he said.
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