Home health care overwhelmed
By Marsha Austin
Denver Post Business Writer
Monday, September 10, 2001 - A severe shortage of qualified caregivers and burdensome government regulations at Colorado home health agencies are leaving many disabled and seriously ill people without the life-sustaining care they need, say consumer advocates, patients and their families.
Disabled Coloradans and their relatives from all corners of the state have overwhelmed the Colorado Cross-Disability Coalition in recent months with complaints about agencies dropping patients with complex medical conditions and those who complain about poor-quality care and scheduling problems.
Many homebound patients can't find replacement nursing care, said Julie Reifkin, executive director of the coalition.
Home health agency executives say they're doing the best they can, but that in the midst of a national nursing shortage that's gutted the staffs of hospitals, nursing homes and home nursing services, they're overwhelmed by a demand impossible to meet.
"There's an endless need for our services," said Kevin Vulner, chief executive of Act for Health, a Denver-based home health agency with about 200 clients and a waiting list that regularly hovers between 30 and 50 patients. "We are constantly looking for qualified caregivers."
Complaints and deficiency citations against home health-care providers also are on the rise at the Colorado Department of Health and Environment, which regulates home health agencies much like it does the nursing home industry.
From January to August, the state had 45 complaints and cited home health agencies 366 times for deficiencies in care. Last year, the state found only 354 deficiencies from 63 complaints.
The three most common reasons state investigators have cited home health agencies for deficient care this year:
Not sending nurse supervisors to evaluate caregivers every two weeks as required by the state.
Not following patients' written care plans
Not properly reviewing patients' drug regimens.
"We've gone through hell," said Debbie Miller, who was forced to leave her job as a casino dealer in Black Hawk when she couldn't find reliable nursing care for her 28-year-old son, Brian.
The Millers have gone through eight home health agencies since the summer of 1997, when Brian was in an auto accident that paralyzed his left side and left him unable to speak and with the mental capacity of a 2-year-old.
The first day Brian came home from the hospital, his nurse failed to show up and Debbie missed work. It got worse as caregivers consistently arrived at the Millers' home late or not at all, Miller said.
Turnover at the agency was so high that Miller said she never knew who was going to show up. During one particularly bad stint with an agency, Miller said, she had a nurse who would regularly be passed out drunk on her sofa when she returned home from work.
She never turned the nurse in because there was no one to replace her.
"I was in such a predicament. I needed to go to work," Miller said. "I didn't have a choice so I let it go. I felt like if I turned her in I was going to be cutting my own throat."
Two-and-a-half years ago Miller fired her agency. She feared for Brian's safety and had troubles keeping up with her work schedule because nurse aides were tardy or absent. "I pretty much fired them all because I wasn't going to take it," said Miller, who became a certified nurse aide so she could care for Brian herself. She is now employed by a home health agency and makes about $13 an hour caring for her son.
She knows firsthand why so many nurses and nurse aides are choosing jobs in hospitals and doctors' offices instead of nursing homes and home health programs or getting out of the profession altogether.
"If I didn't have to, there's no way I'd do it for the money I make," Miller said.
Severe cutbacks in government reimbursement to home health providers, part of a Medicare and Medicaid fraud crackdown in the Balanced Budget Act of 1997, have gutted the home health industry. These programs pay the home-care bills for the majority of disabled adults and children in Colorado.
Home health agencies typically get a daily or monthly fee from the benefits plan, take a cut for overhead and then pay nurses with what's left over. Typically this runs from $8 to $15 an hour for nurse aides. Travel time and expense are often not part of caregivers' pay.
Scores of agencies in Colorado, many in rural areas, were financially wiped out by the government's belt-tightening. Those that remain have less money to pay and recruit staff.
The Home Care Association of Colorado, a trade association for home health agencies, counts 130 agencies as members, down from 210 agencies before the federal government changed payment rules.
When the money got scarce, so did access to quality care for people in Colorado with disabilities, say nurses, family members and consumer advocates.
Many of the industry's casualties were in rural areas, leaving pockets of the state without any home-nursing services and forcing some residents to relocate, said Susan Birch, director of the Northwest Colorado Visiting Nurse Association.
And the troubles aren't exclusive to those Coloradans on Medicaid or Medicare. Those with higher-paying private insurance face similar difficulties, as agencies hungry for more lucrative business take on clients they can't staff appropriately, according to patients and advocates.
"In rural areas it's truly impossible to live up to the onerous regulations," Birch said. "We're encouraged not to take patients if we can't safely take care of them. But it becomes a public health crisis to leave them alone. It's neglect."
Birch's agency of 30 full-time nurses covers a geographic area the size of Connecticut, traveling sometimes up to two hours each way to care for about 150 home-bound patients.
"We absolutely are having to look at: does this mean our elderly and disabled persons are going to have to go elsewhere?" Birch said.
Low reimbursement from government health programs Medicare and Medicaid has left Birch and her nonprofit agency in a bind when it comes to recruiting caregivers. Hourly pay for nurse aides averages $11 an hour in an area where the cost of living - particularly in the resort town of Steamboat Springs - is high, she said.
A livable wage in Steamboat is considered $12.50 per hour for a parent with one child, Birch said.
Her agency no longer provides care on the weekends or after 5 p.m. because of low staff levels.
"It's a recipe for disaster," she said.
Family members often are forced to step in as primary caregivers, or those without an alternative have to give up independent living, said Reifkin, of the coalition.
"There are people in nursing homes because their home health agency dumped them," Reifkin said. "It happens all the time."
Karen Kropp, a United Airlines flight attendant, was forced to take time off work last month when her home health agency suddenly said it could no longer provide nursing care for her 14-month-old daughter, Hannah.
Hannah was recently diagnosed with a rare breathing disorder that leaves her unable to breathe on her own when she falls asleep. Hannah is fine while she's awake - so she only needs a nurse at night to monitor the ventilator that keeps her alive.
Because of her job, Kropp can't stay up with her daughter all night. So when she started having scheduling problems with her agency, Denver-based Act for Health, Kropp said, she took matters into her own hands.
"We had problems from the first day they sent a nurse," Kropp said.
So she and several nurses from the agency who cared for Hannah created work schedules so Kropp could be sure someone would show up every night. The agency even agreed to provide Kropp with a fax machine so she could send the schedules to the nurse supervisors.
Then, a letter arrived notifying Kropp that Act for Health could no longer provide services for her daughter.
"They all want our business because we have private insurance but they don't have the nurses," Kropp said.
Vulner agreed that the agency simply didn't have enough staff to guarantee Hannah would have a nurse every night and had to drop the contract.
To make matters worse, when Kropp tried to separately hire some of the nurses who had become attached to Hannah - Hannah's care is covered by private insurance that is more flexible than Medicaid - the agency told her the nurses were held to a one-year noncompete clause that prohibited them from taking jobs with former patients.
"These agencies, how could they drop us and then not let any of those nurses work for us when I'm dealing with just trying to keep Hannah alive?"
Many homebound patients and their families are finding that when they complain, they get dropped, and in some cases, locked out by other agencies when they try to hire replacement staff, Reifkin said.
Because demand for home nursing is far outpacing agencies' staff supply, some agencies stop providing services to clients with severe disabilities or multiple health problems in favor of healthier and less labor-intensive patients such as quadriplegics who can't speak or move, said a registered nurse who has worked for several Denver agencies.
The agencies make roughly the same amount of money regardless of the patient's condition and find it much easier to recruit nurses for easy cases.
When a patient is dropped by an agency, their new nursing provider may call the old agency to find out what went wrong. If the former agency raises red flags, that's when agencies will say "it's not really worth the risk," said the nurse, who asked for anonymity because he feared losing work or being retaliated against by his employers.
But home-health providers say there's nothing malicious about carefully choosing clients. If there simply aren't enough qualified nurses on staff, it's fruitless for an agency to take a client, said home health agency directors.
"We've said, "There's no way we can take that kind of patient,' " said Birch, who, for example has no one qualified to care for ventilator-dependent patients.
"If I put six nurses on one case and pull them off 13 other cases to do it that's not good for my community," she said.
Facts and figures
Some information about the home-health care industry:
Number of Colorado home-health agencies in 2001: 130.
Number of Colorado home-health agencies before government's payment changes in 1997: 366.
Average hourly wage of a home-health nurse aide: $8 to $15 per hour.
Number of nurse aides disciplined by the Colorado Board of Nursing in 2001: 93.
Number of active nurse aide licenses in Colorado: 19,595.
This is the same story in PA and most likely the rest of the country from my experience as an Intake RN...We are obligated to accept those clients that we have adequate staffing for; insurance co.'s & patients get very upset when we tell them we cannot accept someone as we don't have the qualified staff or adequate # of personal to staff a case. Its getting more acute in SE PA as I have insurance co's calling us weekly stating another agency accepted a client on Thurs/Friday and they yet to see them by following Tuesday for daily care! Karen