Backers Hope Death Rate Study Keeps Hospital Alive

Armed with a new report citing a high death rate among retarded patients who live in community group homes, mental health advocates are launching a last-ditch effort to stop the pending closure of Camarillo State Hospital.

Published in the American Journal on Mental Retardation, the findings have alarmed officials at the California Department of Developmental Services and stirred fears among parents of longtime hospital patients.

Some parents hope the report will persuade state administrators to rethink plans to shutter the 60-year-old hospital.

“They should immediately declare a moratorium on this closure,” said John Chase, a past president of Green Line Parents Group, a nonprofit patient advocacy organization at Camarillo State.

“We ought to go back to the drawing board and see if we can come up with something that better satisfies all of the stakeholders,” said Chase, whose daughter lives at the hospital.

Researchers tracking deaths among developmentally disabled patients said they uncovered this disturbing trend: The mortality rate among retarded people in community group homes is 72% higher than in state institutions.

The findings are critical because the Department of Developmental Services is slowly moving thousands of retarded patients from state-run institutions to private care homes that cost much less to operate.

“Where mortality is high, you find that all kinds of health problems are common as well,” said David Strauss, the UC Riverside professor who wrote most of the analysis. “So it’s a very good indicator.”

More than 800 patients at Camarillo State are scheduled to be relocated to community homes or other state institutions by next spring.

Strauss said the analysis sought to find out whether retarded patients living in community homes are more likely to die than patients under care at state facilities.

What was found surprised even Strauss, who has studied death rates among various populations for 15 years.

“None of us expected this,” he said. “We just looked at the differences in placements because that was the next step in our research plans. This is part of a long [research] tradition.”

Strauss said that the level of care in group homes is not always the same as that at 24-hour state facilities.

“Physicians in the community sometimes are less experienced in dealing with patients with mental retardation,” he said. “Another probable factor is the access to emergency medical care and the rapid staff turnover.

“These are all plausible things,” said Strauss, whose study was funded by grants from the National Institute of Child Health and Human Development.

The study has sparked debate in Sacramento as well as throughout the living rooms of parents with retarded children living at Camarillo State.

But state officials are not convinced that the Strauss study is valid. They contend that the professor made inaccurate comparisons between retarded patients in and outside community homes.

“It wasn’t addressing the general population of people with developmental disabilities,” said Dennis G. Amundson, director of the state Department of Developmental Services.

In fact, Amundson has ordered a study of his own to figure out whether Strauss’ data and subsequent conclusions are accurate. But even he admits that the new study will take up to a year to complete.

“We’re going to look at all of the Strauss deaths in the past two years,” he said. “We’re going to try to determine whether the deaths were expected or whether they were potentially preventable.

“If they were preventable, we’ll try to determine what went wrong so we can make changes,” said Amundson, who oversees a $1.5-billion annual budget.

The issue is critical because Amundson’s agency has been referring thousands of patients from developmental centers like Camarillo State to community group homes.

Many parents of patients scheduled to be moved from Camarillo State say they worry about being forced to choose between a suspect group home or a far-off state institution.

Some mothers and fathers would rather drive hours from their homes for visits than risk less than the best possible treatment for their children.

“They thought my son would fit into a community home. So I decided to go visit some,” said Rose Zachowski, whose developmentally disabled son has lived at Camarillo State for 21 years.

“They’re nice, but there’s only one person on staff at night,” Zachowski said. “What happens if you’ve got an emergency that has to be dealt with immediately? I would [turn] gray worrying about him.”

Leo O’Hearn, a retired Oxnard attorney who served on a gubernatorial task force that studied future uses for the hospital property, said state mental health administrators downplayed the Strauss report and its implications.

“They’ve convinced themselves that the community is the appropriate place for these people and they’re not about to let reality change their position,” said O’Hearn, whose mentally ill son lives at Camarillo State.

“My son has been in the community many times, but he’s never done very well.”

Chase said state officials are ignoring the long-term impact of placing more and more patients in less expensive group homes. The department should rethink its policy of moving patients to group homes, he said.

“The rational response to something like this is to immediately take it seriously and react as though it were accurate,” he said. “But their first reaction was apparently an attempt to discredit a respected and esteemed researcher.

“That’s a shame.”

But Amundson said he could not so easily reverse plans to shutter Camarillo State, which was recommended for closure because of spiraling treatment costs and a diminishing number of patients.

“I don’t have all the information either to praise or condemn the Strauss report,” he said. “We have the overall findings, but we don’t have the why and we don’t know the methodology.

“So we’re going to reconstruct it ourselves.”

In the meantime, the department will continue to refer patients and their families to regional centers, government-backed resource agencies that help place retarded patients into community group homes.

Jim Shorter is director of the Tri-Counties Regional Center, a Carpinteria facility that finds homes for patients living in Ventura, Santa Barbara and San Luis Obispo counties.

He said the Strauss conclusions are troubling, but that he sees no evidence to support them. Shorter said he supports a new study being commissioned by the Department of Developmental Services, even if it does take a year.

“We really need to get to the bottom of this to find what the truth is,” said Shorter, another member of the task force that recommended last month that Camarillo State be converted to a state university by 1998.

“It’s contrary to my experience and observations,” he said of the Strauss findings.

One person not so skeptical about the report is state Sen. Cathie Wright (R-Simi Valley), who opposed abandoning Camarillo State from the moment Gov. Pete Wilson pitched the closure plan.

Wright said she has no trouble believing that the death rate among retarded patients is 72% higher in group homes. She criticized Wilson and Amundson for proceeding with the hospital closure.

“My recommendation is: ‘Don’t run too fast to close Camarillo State,’ ” she said. “We might find that we’re going to need it.”

Every day, Jim Kester says, he counts his blessings.

After 25 years in state hospitals, his 43-year-old developmentally disabled son moved into a group home just this year. So far, so good, Kester said.

“It’s a very good group home,” he said. “David’s been out there since May and he seems to be adjusting real well. I’d have to say he’s getting just as good care.”

But Kester knows he is among the lucky parents.

“We’re in a hell of a position,” said Kester, who after a six-month trial opted to leave his son in the community home. “If you’d asked me three years ago, I would have said I don’t want him out there. But now he’s doing so well.

“A lot of the homes are there for the business, rather than for taking care of the kids.”