Parents of Camarillo Hospital Patients Face Uncertainty

Many are deaf, unable to speak and cannot even balance themselves.

When visitors arrive, one patient at Camarillo State Hospital makes bird noises, jumping up and down excitedly. Another has to wear a helmet in the shower to keep from cracking his head.

Some patients have lived inside the sun-bleached masonry walls for decades. They do not worry about Gov. Pete Wilson’s call to dismantle the institution and send many of them to community-based group homes.

But their parents are frantic.

“I pray every night that he’ll be OK,” said Marcia Flannery, whose 56-year-old son has lived at Camarillo State Hospital since the early 1960s. “This is all he knows.”

Flannery was among four dozen parents who met Saturday at the hospital, vowing to fight Wilson’s recommendation and trading information on placement services and referrals.

Packed inside an employee kitchen, the relatives of mentally ill and developmentally disabled patients plotted a letter-writing campaign to stop politicians from closing Camarillo State Hospital.

“The bottom line here is just political,” said Lita Biejo, a mental health advocate who is leading the battle to keep the hospital operating. “I’ll be the first one in the streets if it comes to [demonstrating.]”

Robert Liberman, a UCLA professor who for more than 20 years has run a research center at the Camarillo facility, urged the roomful of mothers and fathers to target specific legislators.

“Our best chance is to reach people who are on key Senate committees,” said Liberman, who told the family members that hand-written letters are the most effective.

“The Senate is still controlled by the Democrats, and the Democrats seem to feel that Gov. Wilson spends a disproportionate amount on prisons rather than mental health,” he said.

State officials say even if the hospital is closed, no patients who require 24-hour care will be forced into group homes. Nonetheless, many parents say their adult children are being subtly steered toward community-based living situations.

A few of the parents already have found residential care for their developmentally disabled sons and daughters. But most have not even begun looking, and they worry about what they will find when they do.

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For the first time in more than 30 years, counselors suggested to Flannery during an annual progress report last week that her son is now well enough to live in a group home. She disagrees.

“There seems to be a rush, a push to place him in the community,” she said. “That’s the feeling I got.”

Flannery tried group homes before, but it never worked out.

“I’ve had some horrible experiences with my son in community homes,” she said. “That’s why when he had the chance to go to the state institution, he was very happy.”

The anxiety level is at its highest now among the parents of the approximately 500 developmentally disabled patients at Camarillo State Hospital.

The fate of the hospital’s mentally ill patients, numbering about 400, is also unclear, but there is talk of keeping them there by bringing in more mentally ill patients to justify the continued operation as a psychiatric facility.

In that group, there is a small number of children who are wards of the state, most suffering severe behavioral disorders as a result of abuse inflicted by their parents.

Dee Press is one of the teachers whose concerns are typical of those who work with the children.

“The relationships these kids have made here and the trust that they’ve built are difficult to replace,” said Press, who worries about where the children will go if the hospital is closed.

“I can only hope that they are able to be placed with people who are as skilled and committed as we are,” she said. “A lot of inappropriate and negative behavior would escalate before the new relationships get built.”

Still, the immediate crisis is felt most strongly by those involved with the developmentally disabled--those who suffer from severe brain defects and are unable to care for themselves.

Some of the developmentally disabled now at Camarillo State Hospital would be sent to other institutions, where 24-hour care would continue, according to closure plans mapped by the state Department of Developmental Services.

But most will end up at community-based facilities--smaller homes where the programs and quality of care are not as closely regulated as at state hospitals and developmental centers.

The community homes, however, cost as little as $40,000 per patient a year, nearly one-third what it costs to treat a patient at the Camarillo institution.

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“They’ve already made overtures with us to try and find a community placement,” said Gene West, an Oxnard retiree who has watched his 33-year-old developmentally disabled son lapse into violent seizures.

“Patrick has some medical problems that have to be closely monitored by physicians and psychiatrists,” West said. “The staff at those homes are less trained and lower paid. Some of them are just like mom-and-pop operations.”

One social worker said mental health administrators should not be so eager to refer patients to group homes, even though that has always been the ultimate goal of state hospitals.

“Readiness isn’t always an issue,” said the counselor, who did not want his name published. The administrators’ philosophy is “that they need to get the community ready, not so much the patients.”

Rumors of the closure began circulating among hospital workers last month, when a draft report was released by the state Department of Developmental Services.

Douglas Van Meter, the agency’s deputy director, gathered Friday with many of the 1,500 employees inside Haggerty Auditorium and told them to prepare for layoffs.

“What are we supposed to do now?” asked one case worker, who moved to Camarillo after the state hospital in Stockton was ordered closed. “We have families and mortgages.”

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The downsizing plan calls for relocating the developmentally disabled patients now under care at Camarillo State Hospital to other institutions and the smaller, less costly community homes.

If Wilson’s recommendation is approved by the Legislature, the mentally ill patients could stay or also be forced to relocate, leaving 650 acres of rolling hospital grounds vacant and wiping out an annual $80-million payroll, much of it spent locally.

Many of the mentally ill patients at Camarillo have been referred to the hospital by family members, who have watched the patients become dangerous to themselves or others.

But some patients are criminals who have been declared incompetent to stand trial, not guilty by reason of insanity or mentally disordered offenders who require round-the-clock observation and treatment.

“We don’t really categorize people by whether they were committed to us because they committed murder or rape,” said state Mental Health Director Stephen Mayberg, who oversees about 2,000 patients statewide.

“We categorize them more by their behavior while they’re with us,” he said. “Their crimes can range from defrauding an innkeeper or public nuisance to murder.”

There is plenty of room at other state institutions for court-ordered patients if Camarillo State Hospital is shut down. But for the families of patients outside the criminal justice system, there would be few options.

“I doubt he will fit into a community facility,” said Rose Zachowski, the Oxnard mother of a 41-year-old developmentally disabled man who has lived at Camarillo State Hospital for 20 years.

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“He lacks good judgment,” she said. “He likes to take things apart, but he can’t put them back together.”

Family members also worry that the level of care provided at group homes does not match the care and treatment patients receive at state hospitals.

The homes do not always offer the 24-hour supervision, daily checks by physicians and dentists, or the emergency medical response that is critical to Camarillo State Hospital patients.

Nor are the community centers inspected as regularly.

“When my son was in a home, I arrived one day unexpectedly and the children were all in a pen,” said Flannery, who sold her San Fernando Valley home and moved to Oxnard to be near her son.

“They actually put food in a trough like they were feeding animals.”

Nonetheless, later this month Flannery will begin scouting homes and touring other state hospitals for new living quarters for her son.

“I’m 74 years old,” she said. “I don’t need this.”

It took Jim Kester months to find a spot for his 42-year-old developmentally disabled son.

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“Unless you get lucky and find a home with experienced people, you’re going to have more problems outside than there are inside,” said Kester, whose son left Camarillo State Hospital and moved into a small home in Oxnard last month.

“I’m not against putting a child in the community if you can find something equal to or better than what they have right now,” Kester said. “But there’s a certain percentage that will never be able to go.”

West, the Oxnard retiree, traces the downsizing in services for developmentally disabled people such as his son to a 1994 agreement that settled a lawsuit charging that the state did not develop enough community-based group homes.

The Coffelt agreement called for the state to reduce its population of about 7,000 developmentally disabled hospital patients by 2,000 before 1998. But some critics say officials are prescribing group-home situations too often.

“The goal was 2,000 patients within five years, and they’ve already placed more than 1,500,” West said. “As parents, we’re really concerned that they’re pushing things too fast.”

With an increasing number of developmentally disabled patients being discharged from state institutions, health care administrators are scrambling to develop more group homes.

Case workers at the Tri-Counties Regional Center already are busy providing referrals to the relatives of many Camarillo State Hospital patients.

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“We have been developing alternatives in the community very actively,” said Bernie Schaeffer, director of training at a Carpinteria center that contracts with the state to provide mental health services.

“We’ve been accelerating our efforts over the last several years,” he said. “We’ve gone way beyond our quotas.”

Schaeffer and other health care administrators say the group-home providers know their responsibility.

“We’re very aware of the concerns that parents have--especially those who are getting older,” Schaeffer said. “They want to feel assured that their adult children are in a safe place.”