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Charles Monson works the system to help fellow quadriplegics get the high-tech wheelchairs they need

"It feels like—you know that old movie Scanners, where they look at you and your head would explode?" Monson asks. "That's what it feels like is going to happen."

On his way to the hospital, a blood vessel burst in his brain, and it was lights-out.

"I was bleeding so much inside my brain, the concern was that the pressure would just squeeze my brain against my skull and kill me," he says. "So they went in and did whatever brain surgeons do to cut a channel into my brain.

Monson with Robert Casey:  CalOptima had denied Casey's requests for a replacement wheelchair. Photo by John Gilhooley.
Monson with Robert Casey: CalOptima had denied Casey's requests for a replacement wheelchair. Photo by John Gilhooley.

"When my family came to see me, the very first words out of the attending physician's mouth were, 'You're going to want to make preparations for his body.' Well, I didn't die. Three days later, they changed their prognosis for me. They said 'it's possible' I would survive, but if I do, the only predictable outcome was that I would be vegetative for the rest of my life.

"I awoke from my coma 11 days later."

After months of rehabilitation, Monson's contract with CalOptima was canceled. But the calls kept coming in. Physical therapists, doctors and wheelchair vendors asked for his help to get patients through CalOptima's road blocks. Even though Monson was no longer under contract, he was the only one they could turn to. He couldn't say no.

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A CalOptima-contracted wheelchair vendor—a man who asked that the Weekly not give his name because he was not granted permission from his boss to comment for this story—says power-wheelchair denials are commonplace.

Since the agency was created to handle Orange County's Medi-Cal patients in 1995, he says, it has cycled between being receptive when granting power-wheelchair requests and reflexively denying applications.

He says that every few years, CalOptima seems to rediscover it can save money, then complaints from advocacy groups, doctors and patients increase, and the agency relaxes its restrictions again.

"When they find themselves in crunches when it comes to budgets, this seems to be one of the places where they go," he says. "But if this is an issue of them feeling they're spending too much money, in that case, you have to sit down and look at what you're spending, but you also have to make sure you're meeting your members' medical needs."

Power wheelchairs are not cheap, he says. A specialized model with the features Casey and Takacs need can be $15,000 to $20,000. The high price tags seem to encourage interpretations of the law that mandates who gets the wheelchairs. One line in the law that defines what CalOptima should provide recurs in both Casey's and Takacs' paperwork: "Durable medical equipment shall be limited to the lowest-cost item that meets the patient's medical needs."

CalOptima cites the law in both denials, documents show, putting the onus on caregivers.

The CalOptima-contracted wheelchair vendor says using the "lowest-cost" argument doesn't work because the law also specifies the equipment must meet the patients' needs. Expecting understaffed nursing homes to push around patients wherever they want to go and to constantly reposition them so they don't get pressure sores is ludicrous, he says.

"They have a right to look at these things and ask questions. That's doing their due diligence. But in the end, they need to meet the needs of their clients. Reasonable people can sit down and have discussions and come up with decisions that are not Draconian."

CalOptima spokesman Ben Singer agrees.

Singer says that denials for patients who are genuinely in need are an unfortunate byproduct of a system that attempts to provide medical services to more than 80,000 seniors and persons with disabilities in Orange County. "It's a tremendous responsibility," he says.

In these cases, someone sitting behind a desk looked at the paperwork, believed they made the correct conclusion under the law, and denied the power wheelchairs. After that, the responsibility shifts back to the patients.

The scope of the problem is unclear. On Aug. 7, CalOptima lawyers responded to a California Public Records Act request submitted by Monson, asking for the number of requests and denials for wheelchairs over the past nine years. They wrote back, "CalOptima does not have disclosable public records in its possession that are responsive to this request."

Singer—who says he has worked for CalOptima for only a few months and had not heard of this problem before—is acutely aware of the hardships caused by having a disability. His daughter has cerebral palsy and could someday find herself in the same situation as Casey and Takacs, he says. He offered to look into Casey's and Takacs' cases immediately to see if there was something he could do to expedite their requests. However, he admits that patients who don't have anyone to advocate for them are at an extreme disadvantage.

"(Advocating for yourself) becomes really challenging for people who are disabled," he says. "That's where you would hope a physical therapist or physician would intervene."

Singer says the unfortunate reality is, for some patients, they themselves are their only advocate.

"Every patient needs to understand: It's how you advocate and to whom. A lot of people don't like to deal with their health plan because it's one big bureaucracy. But sometimes you have to work that system."

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