FONTANELLE, Iowa — Jamie Campbell can’t believe his Medicaid management company is messing with his care again.

Campbell, who is paralyzed from the neck down, lives in his home with daily assistance from aides paid by Iowa’s Medicaid program. UnitedHealthcare, which the state hired to help manage Medicaid, tried last year to drastically reduce the amount of in-home help Campbell could receive.

He appealed, saying he needed all the assistance he was using. An administrative law judge agreed, writing in a decision last summer that the evidence was “overwhelmingly” in Campbell’s favor. The judge ordered the insurer to continue covering his care as before.

“I just figured I was done then,” Campbell said in a recent interview. “I didn’t dream they’d come after me again.”

But they did.

Campbell is among scores of disabled Iowans who have complained about Medicaid managed-care companies trying to save money by cutting the assistance they receive at home.

Some, like Campbell, have won on appeal — only to see those same Medicaid managers later try to cut their care again. They find themselves trapped in endless appeals, according to a quarterly report by Iowa's Long-term Care Ombudsman.

Level of care purportedly 'not medically needed'

In Campbell's case, UnitedHealthcare officials notified him in June that they intend once again to slash the hours of help the company will pay for from aides he hires.

"This is because the number of units requested is more than what you need,” the letter said. “These are not medically needed.”

The company said it would continue paying for Campbell’s nurse visits in the morning and evenings, which it said total six to eight hours per day.

But it intends to cut the daytime hours of his informal aides from about 158 to about 66 per month.

Those cuts could save UnitedHealthcare roughly $1,000 per month in wages for the aides, who make $10 to $11 per hour. But Campbell said the cuts could also jeopardize his hard-won independence.

Campbell, 45, has been paralyzed since breaking his neck in a high school wrestling accident 29 years ago. He recalls doctors telling him he might live 20 years after the injury.

He's outlived their expectations by staying relatively healthy at home, rarely needing hospital care.

Campbell was one of the first disabled Iowans the Des Moines Register featured last year in its reporting on how for-profit companies were running Iowa's $5 billion Medicaid program, which serves roughly 600,000 clients.

Since then, many other Iowans have come forward to recount similar struggles.

He suspects the managed-care companies hope Iowans like him will become discouraged and stop appealing such cuts.

“But they’re going to learn I don’t give up,” he said. “If I gave up, I wouldn’t be here today.”

Debate rages on Iowa's privatized Medicaid decision

Campbell lives in a modest ranch house in Fontanelle, a town of about 600 people near Greenfield in Adair County.

He receives daily assistance from aides and nurses, but he is alone most nights and several hours during each day.

Campbell receives many of his Medicaid benefits through a program called “Consumer Directed Attendant Care.” The program allows disabled Iowans to hire aides to help them with everyday tasks such as bathing, dressing, doing laundry, preparing meals and taking medication.

His helpers include his mother and his sister-in-law, which the program permits. The program's goal is to let people with disabilities live in their communities instead of in costlier nursing homes.

Iowa’s 2016 shift to privately run Medicaid has been intensely controversial. Critics point to people such as Campbell as examples of how the for-profit management firms are cutting essential services to turn a higher profit.

Supporters of the shift to private management say it is bringing more efficient, effective care that will make the Medicaid program more financially sustainable in the long run.

Campbell signed a privacy waiver, giving UnitedHealthcare permission to explain to the Register why it believes cuts to his care were justified.

The company wrote in an email to the Register that it plans to keep paying for Campbell’s twice-daily nurse visits, which handle most of his medical needs. However, it said, “recommended adjustments were made in meal preparation, housekeeping, laundry, finances and communication time.”

The management company’s statement said the changes were determined after a routine “level of care review,” done to ensure members are receiving appropriate benefits.

The company’s statement to the Register was attributed by a spokesman to KellyAnn Light-McGroary, a cardiologist who is UnitedHealthcare’s chief medical officer for Iowa.

Light-McGroary is a former University of Iowa physician who also serves on the Iowa Board of Medicine, which licenses doctors and helps regulate the state’s health care system.

“We encourage Mr. Campbell, and all members, to avail themselves of their appeal rights,” Light-McGroary’s statement said.

In first appeal, judge calls trimmed hours 'clearly insufficient'

Rest assured, he’s doing so.

Campbell has filed an appeal with the company. If that initial step fails, as he expects, he will appeal to a state administrative law judge.

That route worked out for him last summer, but it was not easy.

He had his mother drive him in a van the 65 miles to Des Moines so he could attend his appeal hearing before Administrative Law Judge Margaret LaMarche.

“I wanted them to see me," he said. "I thought that might have an impact."

Campbell was represented at the hearing by a lawyer from the group Disability Rights Iowa. His physical therapist and family physician testified in person, and two other doctors and a nurse practitioner who had treated him submitted written statements on his behalf.

His pastor also came along for support.

UnitedHealthcare’s lawyer and a doctor and nurse from its staff also came to the hearing. Campbell had never met them before, and he remembers wondering how they could know what services he might need.

The hearing took several hours. A month later, the judge filed a ruling that sided with Campbell.

LaMarche noted that UnitedHealthcare’s doctor and nurse had never met the patient, and she labeled their views as “hearsay.”

The judge repeatedly used the phrase “clearly insufficient” to describe the amount of time the insurer claimed Campbell’s aides needed to feed and clothe Campbell and to help him with other tasks.

“The testimony and evidence in this record overwhelmingly supports the conclusion that James Campbell’s needs have not changed” since his hours of covered service were set when Medicaid was still under state management, the judge wrote.

State works with managed-care companies to improve service

A year after that ruling, UnitedHealthcare is trying again to cut those same benefits.

The Iowa Department of Human Services, which oversees Medicaid, declined to comment on Campbell’s case.

But spokesman Matt Highland said the department is working with UnitedHealthcare and a second national Medicaid management company, Amerigroup, to help Iowans with disabilities navigate the Consumer Directed Attendant Care program.

Changes in the program have included a switch to electronic payments instead of paper checks, which is helping members and their aides receive their pay faster, Highland wrote in an email to the Register.

“With these efforts through managed care we aim to better serve CDAC members and providers,” he wrote.

Campbell works hard to maintain independent lifestyle

Campbell is optimistic he’ll win again when he appeals before an administrative law judge later this summer. If not, he said, he’ll do whatever’s necessary to stay in his house.

“I will not go to a nursing home,” he said. "I do know that."

He said the steps to prevent such a move could include drinking and eating substantially less, so he wouldn’t have to sit in his own urine and feces for long while waiting for his attendants or nurses to come to his home and empty his urine bottle or clean him up.

If he did have to move to a nursing home, he would have few choices, and the care would be particularly expensive to Medicaid.

Only a handful of Iowa nursing homes still accept patients like Campbell, who use ventilator machines to breathe.

State officials said last fall that Iowa's Medicaid program pays nursing homes an average of $601 per day for residents on ventilators, compared with an average of $172 per day for other residents.

But many nursing home owners have decided the higher reimbursement still doesn't cover their costs for such patients, who need increased staff time and are susceptible to dangerous infections.

Campbell notes that he’s not a political liberal who's always pushing for more government spending.

During a recent interview, he wore a black T-shirt with an upside-down American flag and the slogan “Save America.” The shirt is from InfoWars, an arch-conservative TV show that is one of his favorites.

Campbell believes in limited government, but he thinks the government should help people who absolutely need it.

He serves on the Nodaway Valley School Board and on a committee that plans community celebrations.

One of his favorite features of his house is a wide back door, which an electronic device swings open so he can go outside by himself.

On nice days, he rolls his wheelchair through the little town, including to watch baseball and softball games at the nearby middle school.

His electronic door opener is supposed to respond to a series of sips and puffs he makes on a straw-like device attached to his wheelchair. But that system stopped working, so his father helped him jury-rig an alternative.

His father got a push-button controller, similar to a garage-door clicker, and zip-tied it to the freezer-door handle in Campbell’s kitchen.

Campbell rolls his wheelchair over to the refrigerator, then uses his mouth to maneuver a metal pointer capped with a pencil eraser. He presses the pointer against the remote-control button.

The back door swings open, and he rolls outside.

“Redneck engineering,” he joked.

Medicaid management leads to problems with medical equipment

Campbell's father also helps keep his complicated wheelchair running, but it regularly needs professional maintenance.

He is now seeking a new wheelchair company because his old one is pulling out of most of its Medicaid business.

His former wheelchair company, Wheelchair Dynamics, is among many such firms that have complained about low or late payments from Iowa's Medicaid management companies.

Tim Haupert, one of Wheelchair Dynamics' owners, said he hated to stop serving longtime customers such as Campbell.

But the Sheldon-based company couldn't afford to keep selling and servicing wheelchairs that can cost up to $30,000 without receiving timely and sufficient payment from the management companies, Haupert told the Register.

"In my opinion, it's downright deceitful what they do," he said of the management companies.

Campbell hopes he'll find another wheelchair company and maintain access to sufficient in-home care.

He dislikes the spotlight, he said, but he won't be silent about how the changes in Iowa's Medicaid system are affecting people with disabilities.

His arms and legs don't work, he joked, "but I know how to run my mouth."