Nurses care for Mark Doering around the clock, bathing him, feeding him, taking him to the bathroom and making sure his ventilator allows him to breathe.
Doering, 48, has muscular dystrophy and lives by himself in an apartment in Watertown. He fears state pay cuts to his nurses could drive the nurses away and strip him of his independence.
"The only option would be to get stuck in a facility, probably a nursing home," he said. "Being on a ventilator, that's a pretty scary situation."
As part of $625 million in Medicaid cuts over the next two years, state officials plan to trim $4.9 million in pay to nurses who provide in-home care to severely disabled people, including most of the state's patients who regularly use ventilators.
About 2,200 of the nurses take care of about 400 patients, officials say. Almost all of the patients are on Medicaid, the state-federal health plan for the poor.
The state must make the Medicaid cuts to balance a recession-strained budget, said Jim Johnston, director of the bureau of fiscal management for the state Department of Health Services. Officials are spreading the reductions among providers and avoiding benefit cuts to patients, Johnston said.
The cuts won't eliminate nursing jobs or force patients into nursing homes but will reduce pay to nurses, except when they take on the most serious cases, state officials say. Patients "aren't going to see an impact to their care," health department spokeswoman Stephanie Marquis said.
But nurses and patients say the pay cuts will make it more difficult to find nurses to care for patients, some of whom require 24-hour-a-day rotations of 10 to 12 nurses a week.
"It's going to come down to life or death for a lot of people," said Brenda Klabacka, one of Doering's nurses.
The cuts affect independent private duty nurses, a little-known group of nurses who run their own businesses.
In Wisconsin, they care for about two-thirds of ventilator-dependent patients on Medicaid, according to the health department. A quarter of the patients are in nursing homes, and the remainder are served by home health agencies.
Many states don't have independent nurses and rely on nursing homes and home health agencies to provide the care, Johnston said.
Six nursing homes in Wisconsin have dedicated units for ventilator-dependent patients. Five are in the Milwaukee area, and one is in Chippewa Falls.
Madison-based Home Health United, the main home health agency in south-central Wisconsin, doesn't provide long-term nursing care for patients on ventilators, said spokeswoman Susan Pohorski.
The role of independent nurses started in Wisconsin in the early 1980s after some patients complained they couldn't get adequate care through home health agencies, said Fran Meyer, president of Professional Homecare Providers, an association of independent nurses.
About two-thirds of independent nurses are registered nurses and a third are licensed practical nurses, who receive less training.
The state pays the registered nurses $32.69 an hour and the licensed practical nurses $21.79 an hour. The nurses must pay Social Security taxes and cover health insurance and time off, which reduces their paychecks by more than a third, Meyer said. They also pay for travel and supplies such as medical gloves, she said.
The Medicaid cuts involve one definite change and two proposals:
• A select group of nurses who make an additional $160 a month for scheduling nurse teams, ordering medications and otherwise coordinating a patient's care will lose the payment starting Dec. 1. The state doesn't give the payment to nurses at home health agencies, Johnston said.
• Under one proposal, nurses would be paid 4 percent an hour more for up to eight hours a shift and 11 percent an hour less for additional hours. This is to discourage shifts of more than eight hours, which can increase the risk of medical errors, said Fredi-Ellen Bove, the health department's deputy administrator of long-term care.
• Under the other proposal, nurses would be paid 5 percent less for basic cases, a new designation for patients needing less care. State officials wouldn't say what types of patients or how many would be considered basic, but the reduction would account for $3.5 million of the $4.9 million in total savings.
Care at home
Meyer said 12-hour shifts are better for nurses and patients because fewer nurses are needed for each case. She questions how the state will decide which patients are basic cases, as patient needs can change.
"You can't just tell a client, 'Don't have a crisis now because I'm on a lower scale of pay,'" she said.
Six nurses care for John Selke at his parents' home in Lake Mills. Selke, 31, is developmentally disabled and has limited use of his arms and legs. The nurses are at the home 18 to 20 hours a day, and Selke's parents watch John the rest of the time.
John uses a ventilator at night and when he is ill. He can eat by himself but needs help cutting his food, bathing, getting dressed and going to the bathroom.
"If the pay cuts mean that we can't get somebody to cover him, we'll have to stay up all night and take care of him," said Gene Selke, John's father.
Katie Poole's 2-year-old daughter, Aubrey, was born with spinal muscular atrophy, a progressive condition that takes away muscle control.
Nurses care for Aubrey about 48 hours a week at the family's home in Cottage Grove. Aubrey uses a feeding tube, a cough-assist machine and a bypass machine somewhat like a ventilator.
She is gradually requiring more assistance, said Poole, who works part-time out of her home and has a 5-year-old daughter, Avery, with no disabilities.
"With the pay cuts, it will be harder to find nurses," Poole said.
Doering, the Watertown man, has Duchenne muscular dystrophy, a severe form of the progressive muscle disease. He said his months-long stay in a nursing home 10 years ago was a "very scary experience" because the facility didn't have enough trained staff.
He found good care in a Milwaukee-area hospital unit for people on ventilators, but it shut down three years ago, he said. That's when he started using independent nurses at home.
Doering's nurses dress him each morning and move him from his bed to his wheelchair. They put him in bed at night. They help him use his computer.
Several times a day, the nurses suction saliva from his tracheostomy, or hole in his neck, so he doesn't choke.
Though Doering said he is glad to be living in his own apartment, he can't risk being alone for even a minute.
"I'm basically helpless without someone to assist me," he said.