Teri Sernett stood frozen in fear in the living room of the east St. Paul home.
Her patient, an elderly quadriplegic man she had just met, gasped for air, his throat blocked and his eyes rolled back. Nothing in Sernett’s one hour of training as a personal care attendant had prepared her for this.
Fearing the man was about to die, Sernett fumbled with a nearby suctioning machine. She had never used one, but she turned it on and inserted a long plastic tube deep into his throat.
“I was absolutely petrified,” she said. “I had a man’s life in my hands and had no idea of what to do.”
Each day, thousands of home-based caregivers such as Sernett are thrust into similar life-and-death situations with little training and virtually no direct supervision. They perform a dizzying array of complex medical tasks — from inserting feeding tubes and cleaning infections to monitoring intravenous fluids — that once were provided only in hospitals or nursing homes by medical professionals.
Many say they feel overwhelmed and unqualified as they struggle to help patients with serious illnesses and disabilities.
In Minnesota, where more than 100,000 care assistants serve some 36,000 vulnerable patients, all it takes to be certified as a home caregiver is a brief online quiz with questions such as, “When talking to a 911 operator, do not hang up. True or false?”
Of more than two dozen personal care attendants interviewed by the Star Tribune in the past two months, only one had received more than an hour’s training from their agencies. Many said they appealed to their agencies for more training and oversight but were told that state payments were too low to cover the expense.
Isolated and left to fend for themselves, many home caregivers say they have no choice but to violate rules designed to protect vulnerable adults. In interviews, unlicensed personal care attendants said they routinely sterilize wounds, administer powerful prescription drugs and even inject medications into patients’ veins — even though such tasks are prohibited under the state-funded personal care assistant program.
Often, their employers don’t know the risks they undertake because the caregivers are largely unsupervised.
The same pattern plays out across the country. Despite a decade of explosive growth in the $95 billion home-health industry, which is swelling to meet the demands of an aging population, there are no federal standards for the training, credentials and supervision of personal care attendants.
In Minnesota, state law requires personal care agencies to check directly on patients and their caregivers every four months. But some agencies neglect that law, letting years go by before visiting patients, according to some caregivers and county officials.
Personal care agencies are also required by law to employ a “qualified professional,” such as a registered nurse or licensed social worker, who can train and oversee caregivers.
But at larger agencies, these professionals sometimes oversee hundreds of patients, and their house visits often amount to cursory scans of patient care plans, caregivers say.
The Minnesota Department of Human Services, which oversees care for vulnerable populations, has one full-time staff member on its home care team dedicated to service quality, including patient safety, to oversee hundreds of care agencies.
This person is supported by six other staff who do ongoing quality reviews.
When mistakes happen, complaints to state and county agencies sometimes go unreported or unheeded, enabling negligent caregivers to avoid sanctions while moving from one home-health agency to the next, say county officials and caregivers.
“It’s like we don’t exist,” said Jennie Pechia, a personal care assistant from Cambridge. “You can be in a patient’s home for a year, providing life-and-death medical care, before a nurse even pops in to check on you.”
Now, to the dismay of some patient care advocates, the state is proposing changes that could loosen its already limited oversight of the state’s massive personal care assistant program, which last year cost Minnesota more than $600 million.
“We, as a society, have really dropped the ball,” said Lance Hegland, who has muscular dystrophy and is co-chairman of a state council for monitoring care for people with disabilities. “We have asked people to care for their loved ones in their own homes but haven’t given them the skills and the resources to accomplish that with dignity.”
‘Stuck in the middle’
For years, state lawmakers and local officials have voiced concerns about the lack of oversight. In one review of the system, the legislative auditor found that just 57 percent of patients received the visits from qualified professionals required by state law. Even when the required visits occur, the auditor found, the actual supervision was modest. One-third of those who qualified for professional supervision received less than half an hour per month, the auditor found.
The result is that many caregivers rely on ailing clients for instructions, even though the clients can have disabilities that make it difficult for them to speak.
Some caregivers around the state say they often feel pressured to perform complicated procedures, such as injecting drugs and cleaning surgical wounds, even though such tasks are considered skilled nursing care and are not allowed for a personal care assistant under the state program.
“If someone needs an injection of insulin or a painkiller, you can’t always say, ‘No,’ or , ‘Just wait for a professional,’ ” said Shawntel Harry, a home caregiver from St. Paul’s East Side. “You give it to them or they suffer or they die. That’s the situation we’re left in day after day.”
To technically comply with state Medicaid rules, some caregivers say they administer drugs to people with disabilities by placing the pills in a patient’s hand and then lifting the hand to the patient’s mouth.
Melva Munoz, a personal care assistant from Hopkins, said she was encouraged by her former employer to use this technique, known as “hand-over-hand” assistance, to give painkillers and other drugs to patients when a nurse was not available.
“The agencies don’t want to pay for the professionals, but they also want to cover their own tails,” Munoz said. “The caregiver is stuck in the middle.”
Home care agencies say state rules actually discourage more active supervision by medical professionals.
Patients are allotted up to 24 hours of worker supervision and training annually from a licensed professional under the state personal care assistance program. To qualify for more time, providers must show that the worker needs more supervision or training — a process that is time-consuming and often fruitless, providers say.
“Lack of supervision is the elephant in the living room,” said Shelly Elkington, owner of Avenues for Care, a personal care agency based in Montevideo. “There needs to be more eyes and ears in people’s homes … but no one wants to pay for it.”
State authorities have resisted periodic efforts to expand regulation by licensing personal care agencies and their workers. Reformers proposed licensing in 1991, and again in 1997, when the program was about a third its current size. But the high cost of implementing the reforms proved an insurmountable barrier; legislators never appropriated funds so no action took effect.
The result is that unlicensed personal care assistants are not subject to the same routine inspections as nursing homes, assisted-living centers and other state-licensed facilities. Patients and relatives who complain about negligent or abusive care find themselves referred to county governments, which say they lack the resources to investigate home-care agencies.
Jerry Kerber, inspector general for the Department of Human Services, said the state-funded personal care program was “always intended to be more of an informal kind of service.”
“You could put more heavy regulation over the top of it, but then you’d take away some of that consumer direction, some of that flexibility that comes with it,” Kerber said. “There is a balance there.”
Neglect and a death
With home caregivers asked to perform more complex and risky tasks, the absence of training and supervision has sometimes led to fatal results.
Lisa Lassen is still haunted by the pained cries of her father, as an infection from a foot wound spread through his body, consuming his organs. “I will never forget his moaning and yelling for as long as I live,” Lassen said.
The worst part, said Lassen, is living with the belief that his death two years ago was “completely avoidable.’’
Her father, Kenneth Ell, a retired railroad worker with diabetes and early dementia, developed a foot infection soon after entering St. John Home Care, a small group home that employed personal care attendants. The Ell family chose the home, in a neighborhood of Minnetonka, in part because it seemed more intimate than a nursing facility and advertised “specialized diabetic care” and “wound and foot care” on its website.
In sworn testimony, a former personal care attendant at the home described a chaotic atmosphere. The caregiver, Jessica Crawford, said she watched as a staff member reused hypodermic needles for injecting insulin into diabetic residents, and said her training consisted of being told to watch some videos. The group home’s owner, a nurse, visited “maybe once in a blue moon,” she said.
“Most of the employees didn’t know what they were doing or didn’t carry through with their jobs correctly,” Crawford, who no longer works at the home, said in sworn testimony.
Lassen said staff failed to detect obvious signs that her father had a serious infection. He had difficulty walking, complained of foot pain and became increasingly lethargic, Lassen said. When a laboratory report revealed that Ell had an elevated white blood cell count, indicating an infection, she said three-and-a-half days passed before the staff sent the lab report to a physician’s clinic.
By the time Ell was admitted to a hospital, it was too late. The infection had spread so rapidly that, after his lower right leg was amputated, he died of multi-system organ failure. His 89-year-old mother was so overcome with grief that she threw herself on his lifeless body as it lay sprawled on the hospital bed.
The Minnesota Department of Health investigated Ell’s death last year and found that the group home had failed to appropriately treat the client’s diabetes and follow up on the lab report. The facility was cited for neglect.
“It makes me so incredibly mad,” said Lassen, who lives in Grand Rapids, Minn., and coordinates a day program for children with developmental disabilities. “I believe 100 percent that my father would still be alive today had he been treated by licensed and trained professionals.”
Mopelola Akinloye, owner of St. John Home, did not return repeated calls from the Star Tribune seeking comment on the case and the state’s findings about it. However, in court documents, Akinloye and the group home referred to the allegation that Ell received care from incompetent staff as “baseless.”
It argued that, during Ell’s stay, St. John Home employed two nurses and several nurses’ aides, and that all of the staff were trained. Akinloye, a registered nurse, said in sworn testimony that she looked at Ell’s foot every day and notified his physician when he complained of foot pain. A nurse at the facility also denied in sworn testimony that she reused needles to administer insulin to Ell or any other patient at the home. In court documents, Akinloye and the home also argue that Ell’s death may have been caused by conditions predating his foot infection. At the time of Ell’s admission to the home, he was diagnosed with chronic heart failure and kidney disease, among other ailments. A day before Ell’s death, a doctor who cared for Ell wrote on medical notes that he could not determine the cause of his infection.
Workload more demanding
The type of work demanded of home caregivers has changed dramatically in the past two decades.
Hospitals, under pressure from insurance companies to reduce costs, are releasing more patients while they are still sick or recovering, effectively shifting the burden of medical care to the home. Caregivers have had to master the operation of respiratory ventilators, intravenous feeding tubes and home dialysis, while responding to medical complications such as wound infections and low oxygen levels.
More than 80 percent of home caregivers provide nursing care, while more than 50 percent provide help with highly complex medical tasks, according to a survey of 1,926 home care workers who cared for adult Medicaid recipients in three states.
“The burdens placed on [home caregivers] have never been greater,” said Dr. Kevin Mahoney, director of the National Resource Center for Participant-Directed Services at Boston College.
Between medical tasks, caregivers are often expected to do laundry, cook meals and perform other household chores for their clients. In Minnesota, attendants providing overnight care describe sleeping on living-room floors with air mattresses because no spare bed is available, and getting phone calls at all hours of the day from clients who need advice or just someone to talk to.
Job takes physical toll
On a hot July afternoon, sweat poured down Debra Howze’s face as the personal care attendant rushed from one errand to the next. Between house visits, Howze picked up prescription drugs for a client at a pharmacy and did two loads of wash at a laundromat, carting a client’s dirty clothing in the back seat of her car. “I could make the same money waitressing and not have to put up with all this,” Howze, of north Minneapolis, said as she stopped at a CVS Pharmacy drive-through window. “Everything is hurry, hurry, hurry.”
The work is also physically demanding, as many caregivers must push, pull and lift disabled patients on a daily basis. In 2012, the average home health aide missed 14 days of work from injuries and illnesses, 55 percent more than all occupations nationally, according to the Bureau of Labor Statistics. Their median wage: $10 an hour.
For some personal care attendants, the strain can be too much.
Mona Ali of Burnsville, a personal care attendant, said she was asked to care for an elderly woman who depended on a ventilator machine and an intravenous feeding tube. Ali said she received no training on the equipment before being sent to the woman’s home. Instead, a nurse with her personal care agency left a handwritten note at the foot of the patient’s bed, instructing Ali to change the IV bag every two hours.
And if the red light on the ventilator stopped blinking? Call 911.
“I kept thinking, ‘What if I end up killing this person?’ ” Ali said. “I could not understand why this woman was not receiving care from a skilled nurse.”
Sernett said she has not seen a licensed supervisor in more than four years working as a personal care attendant for a severely disabled client. Yet Sernett, 50, performs a wide range of complicated medical tasks that, if not done correctly, could prove fatal.
On a recent weekday morning her client, Gary Jarvis, a 67-year-old former truck driver and stroke victim, had just awakened and was gagging on the mucus that had collected in his throat overnight. His face had turned red and the veins on his neck bulged as he gasped for air.
Calmly, Sernett inserted a clear plastic tube into his tracheostomy, a permanent opening in his neck connected to a respirator, and drained the excess phlegm. Moments later, she rolled his 190-pound body over so she could wipe his bottom with sterile gloves and clean a reddened sore on his lower back. Then she injected a syringe full of pink Milk of Magnesia into the feeding tube attached to his intestines.
For these and countless other tasks, Sernett said she received “absolutely no training” from the home care agency that employs her. Sernett said she learned how to suction a tracheostomy and administer a feeding tube from the patient’s wife, Linda Jarvis, 66, who has no formal medical training and learned how to perform the tasks only by watching the hospital nurses who treated her husband after his stroke 14 years ago.
“This ought to be illegal,” Sernett said, as she cleaned the skin around the man’s feeding tube with a cotton swab and a washcloth. “I find it completely outrageous that a man’s life rests in the hands of people who are completely unsupervised and untrained.”
The living room of the couple’s East St. Paul home resembles an emergency room, with piles of sterile bandages and more than $50,000 in medical equipment surrounding a hospital-style bed. There are only a few signs of the comforts of home: a wooden crucifix above his bed, a collection of model trucks, and the faint sound of country music from a nearby stereo.
Six months from now, Sernett will no longer be able to care for Jarvis after five years. She will graduate from nursing school and Medical Assistance will no longer pay for her services. “I really love Gary, so it makes me so sad that I can’t stay with him as a nurse,” said Sernett, her eyes tearing up. “He should be getting skilled nursing care every day because his needs are so technical.”
Soon, families across Minnesota who depend on personal care assistance could have more control over their own home care and how state funds are spent. Like other states, Minnesota is shifting to a new, “consumer-directed” model of care that would give patients the authority to hire and fire their own personal care assistants and to pay them directly. Instead of relying on the state to pay caregivers, participants could receive monthly cash grants to spend as they see fit on home care.
Families who highly value a caregiver could encourage the person to stay by paying more than the $9 to $10 an hour now offered by many home health companies. Others could use the cash grants to pay for equipment, such as grab bars in bathrooms, which would enable them to live more comfortably at home.
The proposed changes, which must still be approved by federal authorities, could also greatly reduce financial waste. Currently, hundreds of individual home care agencies handle their own payroll and taxes, even though many of the agencies employ just a few caregivers. In the future, people could bypass the agencies and these administrative tasks would be handled by several large state contractors. The resulting savings from consolidating overhead costs likely would free more money for patient care, some disability advocates say.
“This is about consumer empowerment,” said Steve Larson, senior policy director for Arc of Minnesota, which serves people with developmental disabilities. “We really feel that quality will improve and people’s lives will be better if they have more control over their own care.”
Still, some county officials and providers worry that the new program will end the requirement that patients receive home visits by a nurse or other qualified professional. In many cases, these visits are the only professional help that a caregiver receives — and one of the few ways for a provider to know if an elderly or disabled client is receiving adequate care, say county officials.
To Lassen, the balance already has shifted too far away from clear government oversight. During a recent trip to her father’s grave in Aberdeen, S.D., with her 4-year-old son, Joel, Lassen said she is still tortured by guilt over his death.
She regrets not asking more questions when she discovered her father alone and disheveled in the dark basement of the group home. She regrets not asking staff why no one had shaved or showered him for what seemed like days; and why he grimaced in pain as he walked to the dinner table to eat the banana cream pie she brought for him.
As family surrounded the open casket at his funeral, Lassen slipped a small, handwritten note into the breast pocket of her father’s suit. “I wanted him to know how sorry I was that he had to go through so much pain,” said Lassen, as she wiped away tears. “My fear is that, if nothing changes, it will happen again to someone else.”
Staff writer Glenn Howatt contributed to this report.