FONTANELLE (AP) — Jana Criswell was standing by Jamie Campbell’s wheelchair, feeding him a barbecue-chicken sandwich when the phone rang in Campbell’s kitchen earlier this month. The caller was a state official, responding to a complaint Campbell had made about a private Medicaid company that was trying to reduce the amount of time Criswell and others are paid to help him.
Criswell held the phone up to Campbell’s ear and mouth as he explained that he needs extensive assistance because he is paralyzed from the neck down. Medicaid pays about $10.50 per hour for aides to help him live in his house instead of in a nursing home, The Des Moines Register reported. Their duties include cooking for him, dressing him, cleaning his house, running errands, giving him his medicine and emptying his urine bag. A national Medicaid management company, UnitedHealthcare, is trying to trim those services, Campbell told the official from the state’s Long-Term Care Ombudsman’s office.
“What I was getting equaled out to like five hours a day, every day,” he told the woman. “And they want to cut it back to a little over two hours a day. That’s the decision they’ve made, and I’m appealing it.”
Campbell, 44, knows others are also facing such cuts from the three private companies Iowa hired last year to manage the state’s $4 billion Medicaid system. He’s one of nearly 7,400 Iowans with disabilities who use Medicaid’s Consumer Directed Attendant Care program, or CDAC, which pays members of the community to provide everyday assistance that lets recipients continue living in their homes instead of nursing homes. The Long-Term Care Ombudsman’s Office recently reported that reduced hours in the CDAC program are one of the top complaints the agency is hearing about the privatized Medicaid system.
Criswell stood silently next to the wheelchair, holding the phone up, as Campbell spent several minutes explaining his plight to the ombudsman’s staff member. The official told him she would look into it. Campbell thanked her. Criswell put down the phone and resumed feeding her client.
Campbell kidded her about UnitedHealthcare’s attempt to cut her hours. “Are we on schedule for how long you’re supposed to take to feed me lunch?” he asked.
“No,” she replied with a smile. “You need to eat faster.”
Campbell was paralyzed in a high school wrestling accident that broke his neck in 1988. In earlier decades, such an injury likely would have forced him to spend the rest of his life in a nursing home or state institution. Instead, he lives alone in a small, neat ranch-style house in western Iowa’s Adair County. “I’m the perfect example of how this program is supposed to work,” he said.
He gets around his house or down the streets of Fontanelle by maneuvering his motorized wheelchair with sips or puffs into a tube. He types on a computer or dials his phone with a pointer he holds in his mouth. He almost never goes to the hospital, and he’s strong and independent enough to serve on the Nodaway Valley School Board.
Nurses come to his house in the morning and evening. Their duties include hooking him up to a mechanical ventilator that helps him breathe at night.
Less-expensive aides hired under the CDAC program attend to him during the day.
Campbell is a political conservative who thinks people should use government services only when necessary. He said when the state was in a budget crunch several years ago, he volunteered to use fewer hours of assistance under the special Medicaid program. But he said he worried right away when Gov. Terry Branstad decided in 2015 to hire private companies to run Medicaid. Branstad contended the change would bring more effective, efficient care. Campbell didn’t believe it.
“They had said nothing would change — that my benefits would stay the same,” he said. “But I’m smarter than that.”
UnitedHealthcare officials declined to comment on Campbell’s case, even though he offered to sign a waiver giving them permission to do so. Company spokesman Garrett Kasper released a statement in response to The Des Moines Register’s questions about the situation. “UnitedHealthcare ensures our members receive the appropriate level of care from quality physicians and other providers,” Kasper wrote. “For individuals with complex health care conditions, our care managers work directly with members and their care providers to provide the type of care that meets the individual’s needs.” He declined further comment.
Campbell worries that if UnitedHealthcare succeeds in cutting his CDAC aide hours, the Medicaid management company next will try to trim how often his nurses come.
“These companies are for-profit. They’re going to make a profit,” he said.
Campbell’s physical therapist, Jennifer Woodruff, wrote a sharp letter opposing a reduction in the in-home help Campbell can receive. Woodruff noted how much her patient has achieved despite his disability.
“It would be with great defeat that he would be required to no longer be able to participate in society or live in his own home, and enter a long-term care facility simply because of funding cuts,” she wrote. She suggested that whoever made the decision to cut his services should “change places with James and not be allowed to use their own body in any way, not blowing their nose after a sneeze or scratching their head, except for two hours and 15 minutes daily when you can ask someone to do this for you.”
Medicaid recipient Greg Fier of Clinton has experienced what the therapist described in her letter. He also has read the ombudsman’s report about complaints that managed care has been trying to reduce hours of in-home care. “I thought, ‘Hey, that’s me,’” he said.
Fier, 55, who has severe multiple sclerosis, can’t use his arms or legs. He receives in-home assistance through a Medicaid program related to the CDAC program. He said his Medicaid managed-care company, AmeriHealth Caritas, has decided to cut the hours he receives such help from 200 to 170 per month. The company has also decided to cut his aides’ pay from $13.60 to $9.42 per hour, he said.
Fier, who is appealing the decision, worries that he won’t be able to find and retain qualified assistants for the reduced wage. “What I need are people who are knowledgeable, experienced, caring, physically capable and dedicated — that’s the big one,” he said. Besides, he said, such low pay isn’t fair for people whose duties include feeding and bathing him and helping him use the toilet.
He feels fortunate to be able to complain publicly about the problem. Many other people have even more severe disabilities, he said. “The ones I really feel for are the ones who can’t speak for themselves,” he said. “There are so many who have no idea what’s happening to them.”
AmeriHealth spokesman Joshua Brett responded to a Des Moines Register inquiry about the situation by emailing a statement. “AmeriHealth Caritas is administering the CDAC program in accordance with guidelines and benefit levels set by the state. Each service request is reviewed to ensure effective, quality care,” the statement said. “We are committed to providing individualized care that helps our members live healthier lives.”
AmeriHealth also came under fire last month for notifying agencies serving Iowans with disabilities that it plans to cut their rates to the minimum allowed under the company’s contract with the Iowa Department of Human Services. The company, which has reported losing $293 million in Iowa last year, said it was taking the action to ensure the system is sustainable.
Charles Palmer, director of the human services department, said in an interview that he’s aware of complaints that Medicaid managed care companies have been limiting how many hours of in-home services they’ll cover for disabled Iowans. He said he doesn’t believe such cuts are affecting a huge number of beneficiaries, but his department is monitoring the situation.
Palmer, who was appointed by the governor, said all three Medicaid management companies have internal or external case managers who help determine how much service each client needs. “As case managers get to know their clients and providers, service levels are always being reassessed,” he said. “. Adjustments in services in both directions would be fully likely to happen.” For some clients, case managers might add hours, he said.
Clients who disagree with such changes can appeal them first through a formal process set up by the management companies. If unsatisfied with that outcome, the clients can appeal to the Department of Human Services. Eventually, the dispute could wind up in court. One possible legal question could be whether the state is violating federal law and legal precedents requiring that people with disabilities be allowed to live outside of institutions, if possible.
State Sen. Liz Mathis, who is a staunch critic of private Medicaid management, said she has received more than two-dozen calls and emails from Iowans who are upset about cuts to in-home care services for people with disabilities. The management companies appear to be clamping down on the CDAC program, she said. “It’s one area they’ve been focused on trimming.”
Mathis, who is a Democrat from Robins, said she’s been advising affected families of their appeal rights. She said many of the caretakers are friends or relatives of people with disabilities, who are mostly motivated by a desire to help, not by an intention to make much money at it. But if caretakers’ paid hours are cut, some will have to seek outside jobs to make ends meet, which could force the disabled people to move into nursing homes, she said. “I just hope the (managed-care companies) will keep an open mind to that,” she said.
Campbell is determined not to go to a nursing home, no matter what. “I rely on my faith. God will take care of me,” he said. He recalled that doctors expected him to live about 20 years after he was paralyzed at 16. “I’m on year 28,” he said.
The Department of Human Services says Iowa’s Medicaid program spends a monthly average of $4,856 per patient for people younger than 65 living in nursing homes. Campbell believes he’d cost a lot more than average, because of his paralysis. Also, he’s been told that no nursing homes in his area could accommodate his need for a ventilator at night. So if he couldn’t live at home, he’d need to move away.
Criswell, one of Campbell’s care providers, said that even before UnitedHealthcare threatened to cut her hours, she often struggled to get the company to pay the wages she was owed. “For the past six months, I’ve been up in the air every month about whether I’ll be able to pay my mortgage,” said Criswell, a single mother who patches together a living with part-time jobs.
Criswell said she would no longer recommend to her friends that they sign up to care for disabled Iowans under the program. “It’s a circus now,” she said. Campbell has told her he wouldn’t blame her if she quits as his aide. But she said she won’t abandon him, because she’s unsure he could find a replacement.
“How do you walk away from a position like this?” she asked.