Roll Player

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

In room 23 on the third floor at Rancho Los Amigos, Robert Casey is propped up at a 45-degree angle while watching TV. Monson rolls to his bedside and awkwardly shakes Casey's permanently fisted hand with his own gloved hand, which is unable to form a fist. Casey says he is feeling "wonderful."

Eight weeks after myocutaneous flap surgery—where the areas of skin, fat and muscle affected by pressure sores are removed and replaced with healthy tissue—Casey's doctors say he could be two weeks from sitting in a chair.

He lies in a special bed filled with silica-sand particles encased in ceramic, which are being moved by air currents underneath. The bed costs about $1,100 per day. He says it's "uncomfortable."

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.

On April 20, after a hearing at which Monson appeared as Casey's advocate, administrative-law judge Barbara Schlueter from the Department of Social Services ordered CalOptima to rescind its denial of Casey's request for a power wheelchair.

Casey says the new chair should be waiting for him as soon as he's able to sit in it. It will cost more than $17,000.

Casey's speech is somewhat slurred and subdued; it is unclear whether it's caused by his condition or the constant morphine drip being delivered to his veins. "My hair's even growing back, on the top," he smiles wryly as he motions his eyes toward the half-inch-long patch of what looks like baby hair emerging on his head.

A nurse comes in with a paper cup filled with multicolored pills. "Do you want to take these one at a time?" she asks.

"Oh, I'll just take them all," he says. She pours them into his mouth and lifts to his lips a paper cup filled with water, some of which spills onto his hospital gown.

Casey says that although he believes the care he's gotten at Rancho Los Amigos is far better than at his former nursing home, he's glad he's almost out. "My time here is coming to an end, to where I can see a light at the end of the tunnel," he says. "I'm looking forward to going places. I haven't been outside in five months. We're talking about my first outing here, getting out to go and eat. Have lunch somewhere. That would be nice."

He figures he will probably end up back in the nursing home until his name is called up on Section 8 housing-assistance waiting lists. He says he doesn't care where they put him as long as he's in Orange County, so he can be near his mother. "I would be glad to go back to the way I was," he says. "I used to go all over. I didn't have any hesitation about anywhere I went. You know, it was fun, compared to now."

Before leaving Rancho Los Amigos, Monson stops to weigh himself. The facility is one of the only places he knows of with a scale that can accommodate wheelchairs. It reads 200 pounds, 25 of which are his ultralight chair.

Reflecting on his victory on Casey's behalf, Monson says he's glad to help, even though it's only one person at a time.

"Whatever standard you and I, the representatives at CalOptima, the guy at the drive-through who gives you your food, the judge who presides over these cases—whatever standard we accept today, we are absolutely guaranteed to inherit," he says. "Because we're all headed that way. We're living longer, you know. People debilitate when they hit their 70s. Most of us are likely to end up in a nursing home at some time or other. You are one car wreck away on your way back to work from being on the Medi-Cal roll like I am," he says. "This wheelchair I'm sitting in, they denied."


Monson's participation in this story inspired him to start a message board dedicated to people in Orange County who feel they are wrongly denied a wheelchair by CalOptima. The message board can be found at www.ocadvocate.net. Monson's charity Wheels of Mercy can be found at www.wheelsofmercy.org.


dolson@ocweekly.com

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