Care war

At first glance, Rick Cline appears powerless. The high-level quadriplegic spends much of his time in a wheelchair in his home in Sparks. He’s dependent on others for just about everything—from eating and drinking to shaving, dressing, going to the bathroom and paying bills.

But first appearances can be deceiving. Cline’s wheelchair is parked in front of a computer that responds to voice commands. Using this, he can write, send e-mail and work on www.nevadadisabilities.org, his Web site. By blowing into a tube not far from his mouth, he can dial an operator to help him make a phone call. He can call friends and family. He can call Medicaid, the agency responsible for his care. He can call the offices of the Nevada Department of Health and the governor’s office. When he feels in danger, he can dial 911.

When he feels like a pawn in the clutches of a cold, insensitive state policy that’s making his life a living hell, he can pray—because he believes in a God who cares and hears—and he can call a reporter.

Rick Cline does all of the above.

I agree to visit Cline after one of several phone calls in which he attempts to tell me something about Medicaid and self-directed care and nursing visits that he doesn’t seem to like. I understand little of this.

“The story is that they’re punishing me for my refusal to sign a form that includes some stipulations that will make the home care program that I’m on almost unworkable,” he tells me. “What they’ve done is arranged for a home agency care. … It poses a danger on me. It isolates me, and the whole thing is a humiliation. And this is the kicker: It’s costing three times as much.”

Danger, humiliation and cost-ineffectiveness? I ask for directions to Cline’s home.

A nurse is washing up when I arrive. Cline is in front of his computer, and he sends the nurse off with the assurance that I can help him with a variety of things before I leave. I quietly hope he hasn’t misplaced his confidence.

It’s been seven years or so since the accident in Mexico that left Cline mostly unable to move his arms and legs. It was the last day of a trip that had involved doing volunteer work.

“I went to the beach with friends and broke my darn neck,” Cline says. “It was just a simple swimming accident. I bumped my head on the ocean floor.”

He tells stories about getting a needed surgery at a hospital in Mexico where friends had to pitch in money to buy a mattress for his cot. Back in the United States, Cline was hospitalized for a couple of years. It took a while, he tells me, to get his feet back on the ground. I can’t tell if he’s joking.

Regaining some control over his life included taking advantage of a Medicaid waiver program that lets Cline live at home and choose his own care providers. The program’s been available in Nevada for the past 18 months or so. Only about 10 or 15 people in the state take advantage of it.

But recently, these individuals were asked to sign a new form indicating that, if a disabled individual wanted to find his or her own care providers, that person was responsible for his or her own backup-care plan in the event of a scheduled caregiver’s absence.

Cline and others had to choose. They could leave everything in the hands of the state, which would arrange for their daily care. Or they could direct their own care with little assistance from Medicaid. There seemed no room in between for the individual who wanted self-directed care but needed a bit of help with recruitment of caregivers and an emergency backup plan. Cline decided to protest by not signing the agreement that he felt made the program unworkable.

“The waiver option is outstanding; it’s the only existing self-directed care program,” Cline says. “They’re undermining it. … I’m protesting the only way I can.”

In late January, Cline dismissed the caregivers he’d hired, and a new life of agency-directed care began. Strangers floated in and out of his house to help with some tasks, and nurses visited four times a day to do catheterizations. By Cline’s estimate, the cost of his care went from $144 a day to $400 a day. And because of this inflexible care, Cline wasn’t getting out much. Using self-directed care, he’d been able to pursue job opportunities, maintain a social life and go to church. Not anymore.

“I’m being institutionalized in my own home,” Cline says during my first visit. Before I leave, he asks me to move a hospital table up under his shoulder and position a mug of coffee near his chin. I replace the mug’s bent straw, and Cline takes a sip to make sure he can reach the drink. He also has me use electrical tape to attach the thin tube that works his telephone to a microphone device around his neck. He has to be able to reach the tube with his mouth.

“Tape it like crazy,” Cline says. “That’s my lifeline.”

The point of the self-directed care option is to keep disabled individuals out of long-term-care facilities, says Tina Gerber-Winn, chief of continuum of care services for Medicaid. She couldn’t address the specific case of Rick Cline, but she did explain why so few people take advantage of the chance to direct their own care.

“Typically, people don’t want to be in charge of making sure there’s someone to fill in,” she tells me. The revised forms that Cline was asked to sign were devised to help Medicaid clarify its obligations in devising care plans that are approved by disabled individuals’ physicians.

“We have to write policies for the majority,” she says. “Generally people are agreeable to the program.”

Self-directed care is gaining popularity with consumers and politicians, says Brian Lahren, director of Washoe Association for Retarded Citizens and former director of the Nevada Division of Health and Development Services. But Nevada’s definition of federal guidelines for self-directed care is a bit narrow, he says.

“They’re saying, ‘If you control your care, you control it entirely. If there’s a problem, we won’t back you up. If we control it, we’ll take responsibility and you won’t have to worry about it. But you won’t have control over who performs the most intimate and personal tasks of health care.”

Lahren says he understands the point Cline was trying to make by not signing the papers.

“Rick got assurances, but he said, ‘I want you to change state policy,’ “ Lahren explains. “Rick is a very strong-headed, independent person. There’s a strong sense of what’s morally right.”

But changing state policy takes time, and Cline obviously didn’t enjoy his new agency-managed care. Lahren tells me of a recent episode in which a nurse called to say she’d be 20 to 40 minutes late for Cline’s afternoon catheterization. Cline dialed 911 and was taken to the hospital for an emergency catheterization. Hospital workers recorded normal vital signs. Cline hadn’t been in danger, exactly.

“Could he have waited? Absolutely,” Lahren tells me. “But if it happened repeatedly, it could be harmful.”

Cline was more likely trying to make a point. “He’s pretty unforgiving when the state screws up,” Lahren says.

Cline calls again, about a week later. He wants me to meet him at the governor’s office. He doesn’t have an appointment, but public officials are usually pretty responsive, even when he shows up unannounced.

When I arrive at the Capitol, Cline is already waiting nervously outside Gov. Guinn’s office. He’s arranged a brief meeting with the governor’s director of constituent services, Brian Catlett, and Cline is afraid I won’t show up in time.

He’s accompanied by one of his former personal-care aides, Stacey Perlichek. The trip itself is sort of an act of rebellion against the agency caregivers.

“They wouldn’t permit this trip,” Cline says. “They’ve threatened surveillance when I go to meetings. … That’s because I ask hard-to-answer questions.”

When Catlett arrives for a brief meeting in the hallway, Cline explains that he wants the governor’s support in asking Medicaid to build supports in the self-directed-care system, not take supports away.

“That’s where I’m at, trying to get something done,” Cline tells Catlett. Catlett doesn’t say much.

“This is the first time he’s been out of the house [in weeks],” Perlichek adds. “He might as well be put in a home.”

Cline tells Catlett about the increased expense of agency-directed care. “It’s costing an extra $90,000 a year for crappier care,” he says. Catlett nods and writes the number down on a notepad.

“I appreciate you being my voice,” Cline says. “Other folks have been not as helpful.”

Then Catlett’s gone, and Cline’s left wondering if he said everything he meant to say.

“It felt productive, but I can’t tell,” he says. “When I get my hopes up, I set myself up for disappointment.”

I don’t hear from Cline for another week. Then one day last week he calls me to say that he’s getting his life back. After his visit to the governor’s office and another meeting with health officials, Cline says, he decided to go ahead and sign the form.

He feels somewhat assured that state health officials will follow up on verbal agreements to move forward on the issues—like recruitment of care providers and backup plan assistance—that would make the self-directed care option workable.

“What a relief,” he says. “I got a haircut, went shopping, took a nice dinner. I’m going wild.”

He’s not sure that the larger problem is resolved, though.

“On the surface, it’s taken care of, but the real problem is there’s a blindness to the human element. … Sometimes folks can just go about doing their business with complete ignorance of what their actions are doing.”

Change is likely, but it won’t be immediate, Cline predicts. Building awareness is a step in the right direction, but it can come with a cost.

“Boy, did I have to pay,” he says. “Then the pressure started to turn. … What’s cool is that there is progress, not just with me but with the whole program.”

Gerber-Winn at Medicaid tells me that the agency has agreed to set up work groups to talk about making current wording in the agreement “more palatable” and to discuss the arrangement of such things as backup care.

“I’m excited to get some feedback on this,” she says. “Sometimes we think we understand what people want, but if we don’t have it correct, we want to make sure that we do.”

Lahren at the WARC says that his view has always been that disabled individuals should have as much choice as possible without having to give up the safety net of the state agency.

Lahren reminds me that Nevada, using objective measures, is rated as one of the worst places to be for disabled individuals.

“We don’t have money to provide the services available in other states,” he says. “At the very least, we can have the compassion to bend rules and make life as comfortable as possible.

“People who are quadriplegic have very little control over their lives. The precedent we set about control of one’s own life is important."