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.”