Hospital Life Inside and Out

Leaves ripple green and bright on trees that stretch for a mile, flanking the entrance to Camarillo State Hospital, an aging sanctuary threatened by change.

This hospital for mentally ill and disabled patients sprawls across 750 acres at the edge of a vast agricultural plain, hard against the green hills of spring.

It is four miles from anywhere that people gather in large numbers--cloistered, comforting and slow of pace.

It is also strikingly beautiful, as if a university campus--constructed 60 years ago in a Spanish style of red tile and stucco and centered around a broad walking mall lined by huge shade trees.

The jacaranda are blooming lavender just now.

“It’s very calming for me whenever I drive in,” said Deby Tisdale, the mother of a 16-year-old autistic daughter who was first committed to Camarillo at age 9.

“Before, she’d literally throw herself through windows. She’d run into traffic. She’d set a trash can on fire in the living room. . . . I never had it in my mind that she was safe until she went to Camarillo.”

Camarillo State Hospital is beloved by many of the 840 patients who still live there and the 1,500 workers who have earned good wages by turning the bucolic grounds into a community of sorts: A grassy park-like neighborhood complete with its own fire station, power plant, courtroom, laundry, restaurant, clothing store, barber shop, swimming pools and bowling alley--and the chapels of three religions.

That is why the sense of loss was so profound on Friday when Gov. Pete Wilson reaffirmed his January decision to close the hospital by July 1997 to save money.

There are no longer enough patients to keep the place open, officials explained, since so many of the mentally retarded have been moved into the broader community and the number of mentally ill patients qualifying for institutionalization has dropped precipitously as well.

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The governor is expected to officially revise his closure plan Tuesday, when he submits his final 1996-97 budget to the Legislature. But he said Friday that he wants the Camarillo site put to other uses. Now, only the Legislature can change that.

Shuttering the stately old hospital would displace hundreds of patients who have lived at Camarillo for years or even decades, making friends in tiny steps, wandering the expansive grounds and finding comfort in the sameness of their acquaintances and surroundings.

There is nothing good about the coming change, said some parents of longtime Camarillo patients. How would any of us feel if we were ripped away from those with whom we had shared our lives for so long?

The quality of care is also different from one institution to another, they insist.

“Camarillo is definitely an A institution,” said Leo O’Hearn, a retired lawyer who moved from Northridge to Hollywood Beach in Oxnard to be close to his schizophrenic son, who is now set to move to a state hospital in Norwalk 80 miles away if a better arrangement cannot be found.

O’Hearn watched 22 years ago as his handsome, outgoing 17-year-old son, Steven, fell into a world of his own, delusional and confused.

“When an airplane would go over, he’d talk to the pilot. He was convinced he was talking to somebody, but of course he was really talking to himself.”

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Now, after years of voices and hallucination, Steven O’Hearn is usually much better, responding to a new drug administered by doctors at the Camarillo hospital’s renowned UCLA research center.

“The treatment here is as good as he can get,” O’Hearn said. “Steven has the opportunity to get out on the grounds and walk, which you don’t have hardly anywhere else. And this research unit is unique. There are few places in the world where you can get that kind of special treatment.”

There are other Camarillo parents, however, who were just as sure as O’Hearn that change would harm their children, but who now say they were wrong.

“I fought it. It was against my will,” said Jim Kester of Camarillo, whose son David, 43, was placed in December in a so-called community home along a tree-lined north Oxnard street with five other mentally retarded patients.

“But after I got into it, I did find a beautiful place, and my son is doing great,” Kester said. “I think all the parents feel that if they can find something equal to or better than what they have at Camarillo, they will accept community placement. But these kids do not like change. They have a hard time adjusting to change.”

Just how close a state institution can come to being a home is tested on a ward for the mentally retarded at Camarillo State Hospital--the 33-patient Unit 88.

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About a dozen of those patients have been together for 15 or 20 years. Some have been at the hospital more than three decades.

“They have celebrated their birthdays, holidays, everything together for all these years,” unit supervisor Dana Vaughan said. “They’ve become friends.”

Longtime staff members and patients’ parents have entered that extended family.

The core parents, those with children at the hospital the longest, pool their money to sponsor four large parties a year and to buy gifts for the betterment of Unit 88.

One Christmas they filled the staff’s entire wish list--giving framed prints of pastoral scenes for the walls, large rugs for the floors, new water coolers, patio furniture and a commercial popcorn popper.

As the patients gathered for lunch in the ward’s dining room one day recently, they revealed hints of that human bond among them.

Although limited by the constraints of their disabilities--from mildly retarded to profoundly so--some spoke in short sentences or staccato phrases and even reached out to touch a favored friend.

Pam Chase, 48, a small, stooped woman who hustles from one task to another and pauses only for short bursts of conversation, chatted briefly with a former roommate over lunch.

“Hardly anybody can understand what they say. It reminds me of R2-D2 [in ‘Star Wars’],” said John Chase, whose daughter was first admitted to Camarillo in 1962. “But they seem to understand each other.”

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Joanie, a 63-year-old woman who has lived at the hospital for 29 years, stood quietly nearby, watching supervisor Vaughan as she talked with visitors. Then Joanie inched close, reached out with both hands to gently rub the lapels of Vaughan’s blue jumpsuit and to say in a whisper.

“You look pretty today.”

At the tables, most of the patients ate quietly, rarely looking at those sharing their bright blue-and-white booths except when asking for napkins or salt.

“Conversations and general social skills are something you really don’t see a lot with people who are [at least] moderately mentally retarded,” Vaughan said. “But we’ll also see a whole lot of spontaneous affection. All of the sudden you’ll see two of them holding hands or hugging each other.”

The connections between patients grow with the years, especially among longtime roommates.

“For example, Lisa looks out for Joanie,” Vaughan said. “Lisa makes Joanie’s bed every day and tells Joanie what she should wear, making sure she doesn’t wear something that’s too hot.”

The core parents have come to act as mothers and fathers for the whole group. They don’t come just to see their child alone.

Chase, a camera shop owner from West Hills, visits so regularly that he draws a crowd.

His recent pre-lunch arrival quickly brought into his arms a small woman in a red sweat suit diagnosed as both retarded and psychotic. Jennifer Campbell, 37, hugged the 72-year-old man then asked if his wife, Barbara, was with him: “Mother?” she said.

Then offering a handmade bracelet, she said, “Give this to Pam.”

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Jennifer Campbell’s arrival seemed suited to the mood of uncertainty and the fear of change that has come this year to the state hospital and Unit 88.

Her life story is a case study of why many parents fight to keep their children in state institutions and out of homes in the larger community.

It is state policy to find community homes for all mentally or physically handicapped patients--the so-called developmentally disabled--who can benefit from such arrangements.

Jennifer’s horror story, recounted in The Times in 1989, details how such placements took her from a fit 130-pound Special Olympian prospering at Camarillo to a skeletal 95-pounder who could only jabber and scribble incoherently when readmitted 3 1/2 years later.

“In that type of [community] facility you just have to pray that nothing happens that is beyond their ability, and a lot is beyond their ability,” Chase said. “But you should have seen how the Camarillo staff rose to that occasion, how they marshaled resources to get Jenny stable again.”

As Chase spoke, John, a tall man less retarded than most on Unit 88, came up behind him and repeated six times a phrase that showed he knew he might soon be moved to another facility.

“Mr. Chase, I don’t want to go to Porterville,” he said over and over in a monotone voice.

“You’ve got to eat something, John,” Chase said. Then in an aside: “They’re picking up on all this, some of them.”

Since the closure of Camarillo was first announced, Chase said he has visited about a dozen community homes from Santa Clarita to Ventura to try to find a good place for Pam.

Community homes--typically single-family residences in housing tracts--are much better than they were years ago, he said. Many are clean, nice and well managed. But they are staffed with low-paid, marginally trained workers, he said.

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And people like his daughter, who functions at the level of a 4-year-old, would lose something important if they were moved to a locked community home from where they must be escorted every time they explore the wider world.

“There’s a campus-like setting at Camarillo,” Chase said. “And Pam is able to walk to work and to the chapel and she can go to all kinds of activities. That’s the freedom she would lose, and that’s a lot. That’s her life.”

Staff members also fear for their patients if they are moved to community homes, partly because the patients’ conditions are so medically complicated and also because it takes years to get to know them well.

“You’d have to be crazy not to be concerned,” Vaughan said. “So many of these people get along so well because they have a set routine and we know their signals [of distress].” To illustrate, she said when Pam Chase chooses not to talk she tucks her head a certain way, and if pressed “she’ll reach out and smack you.”

The patients of Unit 88 also take great comfort in knowing simple things about those around them, secrets accumulated over years of contact, Vaughan said. Pam knows the birthdays of all staff members, their work schedules and how long they’ll be gone for vacation.

“27th,” Pam says of Vaughan’s April 27 birthday.

“Why not here?” Pam asks the unit supervisor.

“Went to Vegas,” Pam says, answering her own question.

John Chase says state policymakers should experience such scenes of intimacy.

“They’re making decisions that vitally affect people’s lives,” he said, “but they never come in here.”

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The reasons for moving patients from places such as Unit 88 are humane and financial, legal and philosophical, state officials say.

They reflect the nationwide humanitarian trend of the past 40 years toward keeping patients out of institutions if they can live in the broader community instead: A movement backed by law that recognizes individual rights and hopes to offer greater freedom.

They reflect the high costs of caring for patients in a state hospital, about $109,000 a year per patient at the Camarillo facility, nearly double the state’s estimated expense of a community placement. And those costs keep rising as the number of institutionalized patients steadily drops.

They reflect a 1994 change in California policy--resulting from a class-action lawsuit--that forced the spending of hundreds of millions of dollars more for services to developmentally disabled patients who live outside hospitals. That same lawsuit settlement required a sharp reduction of 2,000 patients in the state’s six so-called developmental centers.

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And they reflect a 1991 change in state law that provides financial inducements for counties to arrange for the care of mentally ill children and adults outside of hospitals. County placements in the state’s five mental hospitals have dropped more than half in four years.

“It’s a philosophical decision of where is the best place to care for and treat someone,” said Stephen Mayberg, director of the state Department of Mental Health. “Oftentimes, the state hospital is the last resort. We’ve done a good job in California of moving people into the community.”

And in keeping them out of the hospitals in the first place. For instance, admissions to state developmental centers dropped from 459 four years ago to 118 last fiscal year.

Camarillo State Hospital is touched by trends affecting mentally ill and developmentally disabled patients because the facility has 474 physically and mentally disabled patients and 366 who are mentally ill.

In turn, Camarillo State Hospital’s drop in patients from a peak of nearly 7,300 in 1954 to 840 today reflects statewide statistics.

The number of mentally ill patients in state hospitals has plunged from 37,000 to about 3,500 since 1959. Likewise, the number of developmentally disabled patients in state institutions--most of them mentally retarded--dropped from 13,355 to about 4,700 over the past two decades, the lowest level since 1943. The only increase has been in mentally ill criminals.

That means the state needs fewer hospitals. It has already boarded up several. It closed a developmental center in Stockton just last year.

And now it plans to close Camarillo, because it is the state’s smallest in number of patients with developmental disabilities, among its most expensive to operate and is situated outside the metropolitan areas where most of its patients’ families live.

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Despite perceptions otherwise, only about 6% of the Camarillo patients come from Ventura County, while about 12% come from the tri-county region where parents will be most inconvenienced by the closure--Ventura, Santa Barbara and San Luis Obispo counties.

The parents of dozens more patients, however, live in the San Fernando Valley and are closer to Camarillo than to other hospitals where their children will be moved if they are not placed in community homes or private nursing facilities.

According to state closure plans, most Camarillo patients would stay in one institution or another, with fewer than 100 expected to be moved into the community.

Of the mentally ill patients, such as O’Hearn’s son, Steven, nearly all are expected to go to Metropolitan State Hospital in Norwalk. That includes 126 troubled children and adolescents.

Of the developmentally disabled patients--such as Chase’s daughter, Pam--officials say about 80 would be placed in community homes. Many would go to Fairview Development Center in Costa Mesa and Lanterman Developmental Center in Pomona. But more than half, about 250, are so-called forensic patients civilly committed by the courts because of scrapes with the law. They would be moved in mass to the Porterville Developmental Center.

“I don’t see many alternatives right now” except to send his son to Metropolitan, said O’Hearn on Friday, dejected that efforts to save Camarillo’s mental-health program apparently had failed.

Steven has been placed in locked nursing homes before, only to escape and wander the streets. “They’re terrible,” the father said.

Moving his son to south Los Angeles County would take a personal toll on O’Hearn, 69, who with his wife, Margaret, moved from the San Fernando Valley to Oxnard in 1983 so they could be closer to their son.

As things are, the father visits the hospital two or three times a week when his son is stable. They walk the grounds, and when everything goes well, journey into Camarillo for a haircut and shopping. “He likes it,” O’Hearn said. “I suppose it makes him feel like he’s back to normal, sort of.” And there are quick trips to the O’Hearns’ beach home. “He likes to stand on the porch and look out at the ocean.”

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A move to Metropolitan State Hospital would probably cut O’Hearn’s visits to once or twice a month, the father said. And Steven “would probably never get home at all.”

As for the quality of care, “Metropolitan doesn’t hold a candle to Camarillo,” said O’Hearn, the founding president of an association of parents with children at Camarillo State Hospital. “It’s boxed in by a heavily trafficked industrial, commercial kind of setting.”

“We’ve known people who’ve come from Metropolitan to Camarillo, and there’s a difference. I suspect Steven would revert to where he was six months or a year ago, where he was disruptive and assaultive and highly confused,” O’Hearn said.

Of particular concern to volunteers and Camarillo staff members is the welfare of mentally ill children who now occupy their own campus and school at Camarillo, tucked into a canyon a quarter-mile from the main hospital.

“We have some who’ve been in 60 or 70 placements by the time they’re 15 years old, so we’re sort of their last resort,” said Bob Marriner, assistant program director.

“The kids here can take the walk up into the hills. It’s very good for children,” he said. The children also have their own indoor swimming pool and gymnasium, a petting zoo and farm.

Officials at Metropolitan--an 80-year-old hospital in downtown Norwalk that shows its age--said the quality of treatment will continue there for both children and adults if they are moved from Camarillo.

“It’s not as if we can’t provide all the services they have at Camarillo,” said Catherine Bernarding, assistant to the executive director.

The Norwalk hospital has no children patients now, but administrators said they are busily converting two wards for their use. The wards open onto courtyards with patio furniture and enough grass for volleyball.

The teenagers will be schooled there and younger children will troop across a sprawling campus with giant trees to an old school building being brought up to code.

“It will all be similar in many ways to what they have up there,” said Cynthia Woodruff, director of children’s admissions. “I see no significant difference in the living space.”

But Assemblywoman Grace Napolitano (D-Norwalk) said Metropolitan has nearly 100 criminal patients already and is set to receive more.

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“They’ve never had children there. The buildings are old and need to be retrofitted,” the lawmaker said. “It’s not a place I would want to put children.”

Bernarding, however, said visitors are always surprised by what they find at Metropolitan. “They always say they had no idea there were so much trees and grass, like an oasis in the middle of the city.”

“And the families sound the same theme at all the hospitals,” she said. “They say they receive great treatment and they’re concerned they won’t receive that elsewhere. . . . They fear the unknown.”

Camarillo parents with children who would probably go to the Fairview and Lanterman developmental centers don’t argue about the quality of those programs. In fact, Chase said some from Unit 88 are considering a collective move to Fairview to keep their children’s lives as stable as possible.

Orange County’s 37-year-old Fairview is new by state standards, cooled by ocean breezes and surrounded on three sides by a golf course. It already has a program for the autistic and is expanding it in anticipation of the arrival of 70 such patients from Camarillo. And though hot and smoggy in the summer, Lanterman’s San Gabriel Valley campus has the same physical beauty and Spanish architecture as Camarillo’s and a renowned UCLA research program as well.

But the Camarillo parents don’t welcome the move to either site because of “that god-awful drive of 100 miles one way to see our children,” Chase said. “We’re getting older and that kind of drive is impossible for a lot of parents now.”

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Parent Deby Tisdale believes she has already seen the bad side of changes the closure of Camarillo could foretell.

Her 16-year-old autistic daughter, Melissa, left Camarillo State Hospital in February after years of stability only to end up out of control and hospitalized for two weeks last month.

Tisdale said her daughter’s harrowing experience demonstrates once again that Melissa--who functions at the level of an 18-month-old toddler--needs all of the care she gets in an institution.

“The community support system that was supposed to be her safety net failed her,” Tisdale said. “She fell through the cracks. It is purely divine intervention that she hasn’t been injured at this point.”

Camarillo hospital officials familiar with Melissa’s situation refused comment or did not return phone calls.

Although she has veto power, Deby Tisdale said she placed Melissa in a foster home in Orange County after Tisdale received “strong-armed” pressure. “I tried to resist but I was told I was setting Melissa up to fail,” she said.

Initially, Melissa seemed to prosper, attending a public school and getting along well with her handicapped roommate. But on April 13, she began to bully her roommate after she refused to have her hair brushed at 2 a.m.

After a flurry of phone calls, the foster mother took Melissa to a Mission Viejo hospital, where she stayed for 13 days, her mother said.

“She cannot survive out there,” said Tisdale, who wants her daughter readmitted to a state institution.

But there sometimes is another ending to the same story.

Although functioning at about the same level as Melissa, David Kester could not have had a more different experience. After five months in an Oxnard community home, David is happy, his father said.

A friendly man of limited awareness, David’s world consists of elemental needs. He loves music, television, talking with others and his daily six-hour junkets into the community.

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Five days a week, he rises early, eats breakfast, cleans his room and joins two other mentally retarded people from other homes for a day on the town.

One recent morning, David patrolled the fruit stands at the Oxnard farmer’s market. With help, he bought oranges and a Coke.

“I like the drum,” he said, motioning to a band at downtown’s Plaza Park. “Train. Car. I love a parade.”

At home, on a shady Oxnard street, in an upper middle-class neighborhood of large ranch-style houses, David watches TV and talks in repetitive phrases to whomever will listen.

That house and 23 others are operated by Gail Horrigan and her husband, Robert, who own Colton-based Horrigan Enterprises. They’ve set up six homes in Oxnard in four years as a flood of mentally retarded patients have been transferred into the community.

Each house is staffed 24 hours a day in eight-hour shifts by six people, most of whom earn about $7 an hour and who are receiving regular training, Horrigan said.

The Horrigans are paid the prevailing Medi-Cal rate of $44,000 a year to provide board and care and supervision for David Kester and the others, she said. That is the bulk of the $58,688 the state Department of Developmental Services estimates it spends for the average patient living in a board and care community home, and about 55% of the yearly cost in an institution.

Shannon King, who oversees Horrigan’s homes in Oxnard, said it’s money well spent.

“Most of us who’ve been in this business a while do have questions about why they’ve been in the institutions so long, when they could have been out in the community,” King said.