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Terminally Ill Teen-ager's Care Touches Off Dispute

November 22, 1987|DAVID FERRELL | Times Staff Writer

At 19, Andrew Wineman has difficulty expressing where he would like to live. Violent bouts of self-mutilation, caused by a rare neurological disorder, have caused him to bite off portions of his tongue and his lips, and most of his teeth have been extracted to prevent further damage.

He is also mildly retarded and unable to sit upright, all the result of the deadly Lesch-Nyhan syndrome.

But his mother, Shelly Shaffer, said Andrew is being kept against his will--and against the advice of many health-care experts--at Fairview Developmental Center, a state-run hospital in Costa Mesa.

For nearly three years, she has battled to have Andrew placed in a community-care facility near her home in Encino--the kind of place he lived in for 11 years. But so far her efforts have been thwarted by new state policies and spending technicalities. Shaffer's attorneys filed suit Friday in Orange County Superior Court in Santa Ana against the state Department of Developmental Services.

The case, pitting the wisdom of local health-care officials against that of state administrators, illustrates the difficulty of trying to deal with individual needs within the vast state hospital system. On one side, state administrators have declared that patients such as Andrew, who must be restrained, are no longer acceptable at community-care facilities where they might be a danger to themselves and others.

On the other side are officials who have tried to make allowances for Andrew because of his extremely rare disorder. After the need for restraints caused him to be moved from the United Cerebral Palsy/Spastic Children's Foundation facility in Chatsworth--where he had lived since childhood--officials began patching together a special plan to permit him to attend a different United Cerebral Palsy community facility in Sylmar.

That plan, pressed for by Shaffer, won support from Andrew's doctors and officials at the North Los Angeles County Regional Center, the agency that normally matches disabled people with appropriate care centers. The plan would have been $9,000 to $16,000 cheaper than the average cost of housing patients at a state hospital, Shaffer said.

But, two weeks ago, state officials nixed the proposal.

"The whole bureaucracy is saying, 'We've got to get people out of state hospitals,' " a frustrated Shaffer said last week, referring to the state's efforts during the last two decades to move more patients out of the state hospital system and into community-based facilities closer to their homes. "Meanwhile, here's . . . a great example of someone who should be out. It would save them (money). And they're keeping him there.

"The whole thing is ludicrous."

Shaffer, 41, who runs a home-care nursing agency in Encino, said she brought her suit because Andrew is extremely unhappy living at Fairview. Despite the ravaging illness, she said, Andrew is intellectually well beyond many of the profoundly mentally retarded patients at the state hospital. Victims of Lesch-Nyhan syndrome are almost completely debilitated, suffering self-destructive behavior, loss of motor control and potentially lethal bodily accumulations of uric acid--but they are mentally very aware.

"Physically, he's totally a mess," Shaffer said of her teen-ager. "But cognitively, if you talked to him one day and came back six months later, he would remember you. He is alert."

Although Andrew has difficulty speaking because of his physical problems, she said, he is aware of his circumstances and can express his feelings about them. "If you ask him, 'Do you like living at Fairview?' he'll say, 'I hate it, I'm angry, I want to go home.' "

Gary Macomber, director of the state Developmental Services Department, which runs Fairview and six other California hospitals like it, said he cannot discuss details of an individual case. But he defended state policies, saying officials have caused a large drop in the population of state hospitals by sending disabled youngsters into less-restrictive, community-care facilities.

"In the last four or five years, we've placed about 2,500 clients . . . into community facilities, and about half of those went into intermediate-care facilities," such as the Sylmar center that Andrew wants to attend, Macomber said. The transfers--designed to provide more appropriate care--have reduced the population of state hospitals to about 6,700 residents, he said.

Draw the Line

But state officials draw the line when a patient requires more nursing care than a facility is designed to offer, Macomber said.

"If you have a facility . . . with one staff member to every three residents . . . and some well-meaning person starts requesting three attendants working around the clock, then this is not an appropriate place for that patient," Macomber said.

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