Health Officials, State Split Over Care of Afflicted Teen

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 funding technicalities. Shaffer’s attorneys filed suit Friday, in Orange County Superior Court in Santa Ana, against the state Department of Development 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.”

While 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 total 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 explained.

“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.

Under the plan formulated by local officials, Andrew would have received his own nurse at the Sylmar facility, where normally one nurse is assigned for every four or eight patients. According to Shaffer, the cost of that arrangement, about $50,000 to $55,000 a year, would have been a huge savings over the $65,000 average cost for patient care in state hospitals.

However, Macomber said the numbers can be misleading: The state average includes overhead such as building maintenance and yardwork. A truer cost for a single patient in a state hospital is about $35,000--lower than the subsidy Andrew would require outside of Fairview, he said.

Widespread Disagreement

“But that’s not the determining factor” in these cases, Macomber said. “We look at what’s best for the patient.”

On that point, disagreement has been widespread.

In letters written to the state and to Fairview, a number of social workers and doctors--including one of the discoverers of Lesch-Nyhan syndrome--have urged that Andrew be returned to a community facility.

“My son . . . cannot even hold his head up--he is like a wet noodle,” Shaffer said. “But he needs socialization. That’s the thing he lives for.”

Returning Andrew to a community center would improve his social environment and solve many other small problems, according to Shaffer.

Suffering from chronic back trouble, Shaffer is unable to drive from Encino to Costa Mesa to visit her son, she said. Fortunately, she said, a former employee of the United Cerebral Palsy center, Laura Reynolds, grew attached to the youngster and now visits Andrew every other weekend, taking him on outings and occasionally driving him to his mother’s home.

“She takes him to the beach, the movies, McDonald’s--everywhere,” Shaffer said. “I thank God for her. She’s unbelievable.”

But those trips are a hardship for Reynolds, who lives in the San Fernando Valley, Shaffer added.

If Andrew lived nearer to home, “I would see him a minimum of once a week at home and once a week at school,” his mother said. “He would live five minutes from Laura’s house. She’d pick him up for supper probably every other night.

“His life would be enhanced probably 100%.”

Dr. William L. Nyhan, who helped discover Lesch-Nyhan syndrome and who continues his studies of the disorder at the University of California, San Diego, sided with Shaffer as she began trying to transfer Andrew out of Fairview. In a letter to Los Angeles health officials in early 1985, Nyhan called it “entirely unnecessary” to keep him there.

“Special consideration should be given to individuals with the . . . syndrome,” Nyhan told health officials. Despite the self-destructive behavior--which is a part of the syndrome that will never change--Andrew is mentally astute and does not require restraint to keep him from harming others, Nyhan wrote.

“Andrew’s ‘restraints’ could well be defined as a body support system that will protect him from injuring himself,” Nyhan wrote. “These children require socialization and emotional stimulation as does a normal child. Andrew would profit by living in a community setting.”

Efforts Supported

A psychiatric social worker at Fairview also supported efforts to transfer Andrew out of the facility. In a letter on Fairview stationary--which Shaffer provided to The Times--the social worker favored returning Andrew to a community facility “as soon as possible,” citing his relatively high intelligence.

“Andrew is a very sociable person who thrives on much human interaction,” the social worker wrote. “He especially looks forward to going to community school each week. He has often asked to go home.”

Working with North Los Angeles County Regional Center officials, the United Cerebral Palsy/Spastic Children’s Foundation studied what it would take to provide for Andrew and agreed to place him in the foundation’s 59-bed Sylmar facility if the state would pay for additional nursing costs, said Dr. Ronald Cohen, executive director of the nonprofit foundation.

“We reviewed his case and . . . we are saying, ‘Yes, we will accept Andrew, once we have an opening,’ ” Cohen said.

In recent months, however, the home has been filled.

Macomber, the state director who made the decision in the case, insisted that patients who need additional nursing care are better off in a facility that can provide it. He denied charges by Shaffer that the bureaucracy overlooks individual needs, saying: “That kind of charge is groundless. Our whole system is based on individual needs. I made decisions about those patients like they’re my own children.”

Even so, Macomber said, technical funding restrictions would have made it impossible to pay for Andrew’s specialized nursing care even if state officials had agreed to allow his transfer.

Normally, federal money--channeled through the state to help care for the disabled--pays only for standard expenses, Macomber said. In some unusual cases, so-called “patch funding” is available to meet emergencies--but that money is intended to be temporary, he said.

“We can’t violate the law and pay where we can’t pay,” Macomber said.

Shaffer, who saw “patch funding” money as the solution to the problem, conceded that her son might require the additional nursing care for the rest of his life.

But because so little is known about Lesch-Nyhan syndrome, there is no telling how long that might be, she added.

“His life expectancy?” Shaffer asked rhetorically. Until recent improvements in drug treatment, it was thought he might die by age 15.

“He’s already exceeded that,” she said.