Every Day Tells Tragic Story at Fairview Center

Thirty patients with brains gone awry lie in metal-railed beds at Fairview Developmental Center in a room filled with lullabies, plants and heartbreak.

“This is our latest admit,” said Anna Taylor, a nurse in charge of the patients, “a 3-year-old post-drowning” victim. He’s “a beautiful little boy. The trauma to the family is just unreal. He’s been here two months. . . . “The baby over here is 8 1/2 years old; she’s a microcephalic. . . . That’s a congenital defect. . . .” Taylor describes another patient: “a sudden infant death syndrome that had occurred in the hospital when she was in the nursery shortly after birth and they caught it . . . a beautiful little girl who smiles, loves to be touched, loves to be talked to.”

One patient can be fed by hand; the other 29 are nourished through stomach tubes. Twenty-four have tubes through the throat to help them breathe. Beside each bed are extra feeding machines, breathing machines, machines to remove bodily fluids. Arms and legs are bent awkwardly, like broken sticks, another result of brain damage.

This ward, No. 209, is for the worst cases at Fairview, the state hospital for the mentally retarded--now known as “developmentally disabled”--that opened on Jan. 5, 1959.

On Tuesday, Fairview was in the headlines when a staff painter was arrested after the shooting death of one of his supervisors and the wounding of two other staffers, including the executive director, Hugh Kohler. The shootings also brought attention to the ongoing everyday tragedies of men and women from 1 to 81 who are not normal, who cannot exist in society because of genetic disorders, brain damage and illnesses with strange names like Prader-Willi syndrome.

Four out of five patients here need at least some help dressing, washing and eating. The average age is 29, the average length of stay 13 years. Most of the 1,100 patients will die here.

At Fairview, society’s changing attitudes toward the mentally retarded have been played out as well. Patients have more rights today; they are evaluated by a team of doctors annually; they wear individual clothes rather than uniforms; there are no more “show and tell” days, when the public was urged to sit in an auditorium and see the retarded paraded before them. For more than a decade there has been no use of electric “zappers” that staffers used to mildly shock unruly patients.

Patients spend mornings and afternoons listening to music, watching television or movies, making trips to the county fair. Those who are able attend classes or work at simple jobs like pasting business cards on paper for private firms. There are church services on Sundays, visits from barbers and beauticians.

Kohler, recovering at home from his gunshot wound, said he wants Fairview patients to be able to “attain their fullest freedoms” and have as much access as possible “to the wonderful, exciting things that exist in this world.”

“We have caring, compassionate employees who try their best,” said Kohler, who has run the hospital since 1985. He said the facility also benefits from “strong, devoted parents who care deeply about their relatives and support us.”

During the day, the grounds are calm. Paid senior citizens, known as “foster grandparents,” wheel gurneys with patients along concrete paths set amid grassy fields at the complex. Residents wander through the petting zoo. Those under 21 who are physically well-off enough wait to board buses that will carry them to classes off the hospital grounds.

Last Tuesday’s violence was unknown to most residents and uncharacteristic for Fairview, which after being rocked by staff turmoil in the 1970s had settled in to an operation where the state tried to do the best it could for society’s least fortunate.

There are still occasional problems. The state auditor general reported last May that Fairview staffers sometimes failed to get consents from patients, their parents or their guardians before administering medication. The report also said that some patients were kept separate from their peers as punishment longer than the one hour allowed. Also, there were fewer than the required minimum of staff members on the night shift on seven of the 28 days Fairview was studied.

But Matt Guglielmo, president of a Fairview support group for the past 14 years and father of a 30-year-old daughter who is a patient here, said the problems are minor. “I consider this a country club atmosphere here.”

Marian Snow, who has two daughters at Fairview, said the “situation here has been very good and it’s getting better.”

Guglielmo drives 50 miles each way from his San Marino home to visit his daughter. Snow and her husband come up from their home in San Diego. Some parents arrive by bus to visit. One couple arrive in a limousine for the annual evaluation of their child.

Over the years, Guglielmo and Snow have seen dramatic changes at Fairview, one of seven developmental centers in California.

The facility that opened with 10 patients in 1959 had about 2,600 by 1968, many of them teen-agers. In the early 1970s, the average age was 14. But then hundreds of patients were transferred to nursing homes, board and care homes or their own family homes. The population dropped to today’s 1,100 level, and at one point the state planned to do away with Fairview and the other state hospitals--as they were then called--altogether.

But those plans were scrapped and Fairview is still home to society’s least fortunate. In a year, 20 or so patients will die of natural causes. Two dozen will be transferred to community facilities. Another two dozen who cannot be cared for at home any longer will be admitted to the hospital.

Frank Crinella, who was executive director of Fairview from 1977 until 1985 and still runs a research unit on the hospital grounds, said civil rights and money led to the push to get patients into the community wherever possible.

The civil rights movement of the 1960s extended to the retarded, bringing “the idea that every human being is entitled to live in the least restrictive environment and to maximize his or her potential to the fullest,” Crinella said.

He said money worries by governments led to the conclusion that “it’s cheaper, or at least it gives the illusion of being cheaper, to place people in community care residences rather than these facilities.”

Fairview has an annual budget of $72 million, said Lou Sarrao, the hospital clinical director. That works out to an average cost per patient of $65,000 per year, with more than 80% of that going to pay the doctors, nurses, psychiatric technicians, gardeners, police, painters, wheelchair repair workers and a host of others, Crinella said.

Smaller facilities in the towns and cities of California cost far less to run; attendants are paid less and there are fewer of them.

Sending those who can survive outside Fairview off into the community has meant that the ones kept at the hospital are the most severely retarded.

About 3% of the patients have neurological diseases such as Huntington’s chorea, a hereditary illness that typically doesn’t show its symptoms until a sufferer becomes 30 or 40 years old and develops spasms, personality changes and dementia.

But 97% of the Fairview patients are mentally retarded, nearly all of them “severely or profoundly retarded.” About one-third of the patients need acute nursing care, meaning around-the-clock attention. Another 45% need skilled nursing care. Few are able to dress or feed themselves. The average mental age is 2 years or less.

John is 53 years old, with an IQ of 49. A chunky man with a mustache and blue eyes, he works outside Fairview, riding a hospital bus back and forth to his job five days a week. That makes him a success story here, one of a handful. Only 60 of the 1,100 patients are well enough to go to school or work.

What does he do? “I put things in bags.” How long has he been at Fairview? “A long time, I don’t know how long. I came from Pacific,” another state hospital.

Hospital officials say John lived at home until he was 14, attending school from age 7 to 12 but only getting to the third grade. Because of emotional problems and worries that he would hurt others, he was hospitalized at several state and private facilities before coming to Fairview in 1959 when it opened. Eleven years later, he started living in community homes in the San Diego area, where his family lived. But eventually he started having problems again and was readmitted to state hospitals, returning to Fairview about eight years ago.

There was one more attempt to let him live outside, but a one-month stay at a San Diego home in 1986 ended when he attacked a caretaker.

Alan Reed, who supervises John and 39 other residents on the top floor of a two-story building, a 15-minute walk from the administration building, calls John “very developmentally advanced in comparison to a lot of the other people who live at Fairview.”

For many younger patients, “he’s almost like a grandfather kind of figure, kind of slow and gentle,” Reed said. “He plays a mean game of checkers, and some of the other guys like to challenge him. But he’s very parental.”

John’s retardation is considered “moderate to mild,” the result of a high forceps delivery at birth. He shuffles as he walks, often halts in his speech and is showing early signs of senility.

John’s passion is baseball, especially the Dodgers. On the walls of his part of the room he shares with three other men hangs a photo collage of Dodger players from years gone by, made for him by a Fairview staffer. He watches or listens to baseball games faithfully.

Reed said that while he thinks John could live outside, the patient himself “wants to stay here” and sometimes worries that the staff is trying to push him out. There are times when emotional problems keep him from working; like the majority on the “behavior adjustment” ward, John receives anti-psychotic drugs.

Crinella said that when he went to work at Sonoma State Hospital in 1969, 100% of the patients in some units were on the anti-psychotic drug Thorazine. When he came to Fairview in 1977 to replace the executive director the state wanted removed, he found that only about 35% of the patients were on medication.

Crinella remembers one nurse saying the staff gave a patient Thorazine “every night whether he needs it or not.” As director, he kept reducing the percentage of patients on medication, getting it down to 9% by 1979, which he said was the lowest in the United States. Currently about 13% to 15% of the patients are medicated, he said.

Now he and eight other full-time staffers are studying the effects of withdrawal of medication, among other research projects.

Crinella said another tool to restrain patients that waned in use was electric shock.

The hospital never did use electro-convulsive shock, where electrodes are clamped on a patient’s head and they are shocked into unconsciousness, Crinella said. That sort of treatment was reserved for the mentally ill, not the retarded.

But until 1980, patients who officials feared would hurt themselves wore receivers on their ankles or wrists. Staffers would use a radio transmitter to shock patients when they believed it necessary.

Crinella said he felt there was no scientific evidence that such shocks were effective in eliminating bad behavior, though they might temporarily suppress it.

The radio transmitters “were called ‘zappers’ by the staff . . . and a client being given a treatment was said to be ‘zapped,’ ” Crinella said. “It promoted a mentality where in the hands of the wrong staff person the client would actually be stalked and they would try to catch him injuring himself or herself so they could deal a zap.”

Crinella said most staffers administered the shocks only reluctantly and were required to have undergone the shocks themselves during training. He called it a “mild, unpleasant shock,” not enough to stop a patient in his tracks. “But in any event, it doesn’t work.”

Today, staffers are trained to try to keep patients busy so they don’t misbehave out of boredom. When restraint is required, as little as possible is used, Crinella said.

Being a state hospital staffer “is a tough job, but just because it’s a tough job you can’t go around shocking people or giving them medications” for the convenience of the worker, Crinella said. “That doesn’t make any sense.”

Another change Crinella made was the abolition of “show and tell” days at the hospital. A “wonderful, kindly physician, a very bright man,” held clinics for the public, explaining the various types of mental retardation by parading the sufferers before the onlookers, Crinella said.

A generation earlier, the same doctor was considered enlightened for educating the public about retardation. “He just was reflecting a philosophy that was very enlightened at a time when he was in his professional prime,” Crinella said.

Guglielmo, the 14-year head of Fairview Families and Friends, said that conditions at the hospital have improved steadily over the years. His main worries now are that officials will force patients to leave the hospital for other, less suitable facilities in the community, and that fewer parents will get involved in monitoring Fairview.

Guglielmo is 71 years old and still exudes the forceful confidence of the business executive he was before retiring as an executive vice president of the Broadway department store chain. He has two married daughters and Annie, “my baby,” who was in a private treatment center for three years before being transferred to Fairview. She suffers from Down’s syndrome, is blind in one eye and “has all kinds of problems,” Guglielmo said.

Guglielmo noted that community facilities are plagued by problems, which state officials confirm.

Every year, several are shut down for violating the conditions of their licenses. Last month, a board and care facility for the developmentally disabled in Santa Ana was closed and nearly 100 patients transferred to other facilities after investigators charged “extreme neglect” of patients.

Of the patients who can do well outside Fairview, Guglielmo said they should go. But he said his daughter isn’t part of that group.

“I’d like to go to the grave knowing my child is going to be here permanently,” he said.

Guglielmo’s view hasn’t been shaken by the problems that have sometimes plagued Fairview over the years:

* In mid-1976, state officials tried to force a longtime executive director to accept a transfer. He resigned instead, and the next administrator remained only six months.

* Later in 1976, a state investigation indicated that employee negligence might have been a factor in two patient deaths at Fairview; other state hospitals were also investigated for questionable deaths.

* In 1977, a psychiatric technician drank wine and took Valium for several hours in a party with two others at a residence at Fairview, though not in the presence of patients. The technician then fatally shot herself in the head off the hospital grounds.

* In May of 1986, an autistic boy being restrained at a Huntington Beach special school where Fairview students were taught died of asphyxiation. The boy’s teacher was later fired.

* In July of 1986, Fairview’s facility administrator was demoted after investigators charged that she used state employees to perform architectural and electrical work on her house.

Those problems haven’t shaken the faith of Marian Snow, a calm, articulate woman who has traveled often to Sacramento to buttonhole politicians and state officials on issues affecting the retarded. Snow said the older of her two daughters at Fairview was in a community facility for more than six years.

“It was a disaster,” Snow said, even though the residence was considered “a model facility.”

“We were so glad to get her back here,” Snow said of Fairview. Most Fairview residents are profoundly retarded, functioning like 2-year-olds. “These are the people that the community is not set up to care for,” Snow said.

The community obviously can’t handle patients like those in ward 209, the youngest of the worst cases.

Nurse Anna Taylor said the young ones, injured before they could gain strength, have bones “like little eggshells.” Nurses take special care to turn them without breaking their bones.

Ten of the 30 patients suffered brain damage when they nearly drowned. Two British researchers who studied California’s developmental centers noted in a report four years ago the “peculiarly California phenomenon (of) near drowning accidents in (home) swimming pools” that lands the victims in state hospitals.

Some patients have suffered such severe brain damage that they cannot even cough. One has an “exaggerated startle reflex,” so nurses approach the bed cautiously, speak slowly and touch the child firmly so she doesn’t jerk away and hurt herself.

Taylor knows each of the 30 patients well: their names, their medical histories, whether families visit them.

“Each one is such an individual,” Taylor said. “Handling nursing care for this type of client, you cannot just float a nurse in for an eight-hour shift and get the same quality of care that you’d get with a nurse that knew them.”

Eric, who nearly drowned on his 3rd birthday, blinks as Taylor and a visitor walk by.

“I really try to give the care that (I’d give) if it was a member of my family,” Taylor said. No one is exempt from possibly becoming a Fairview patient, she said. Car accidents or head traumas can strike anyone.

Especially anguishing is “the pain the parents go through. . . . For a lot of families, the pain is so great they deal with it by staying away.

“I had a parent yesterday on the phone, she called around 3:15 and I spent 45 minutes on the phone with her and she said to me, ‘I just can’t meet with him now.’

“I said to her, ‘You take care of your needs. We’ll take care of his.’ When she’s ready, we can support her.”