Parents of the Disabled Sue to Stop Transfers

By JANET WILSON and MARCIDA DODSON

Aug. 30, 1997 12 AM PT

TIMES STAFF WRITERS

COSTA MESA —

Melissa Tisdale, 18, is six feet tall and 135 pounds. She looks like any other young woman, her mother says, but she’s not.

Melissa is autistic, functions at the level of a 17-month-old and can’t talk. For eight years, she lived happily in Camarillo State Hospital, her mother said, with strong friendships and around-the-clock nursing and medical care and access to park-like grounds.

But a 1993 court settlement mandated the release of thousands of patients like Melissa Tisdale from the state’s seven developmental centers and state hospitals. Arguing that no one should have to spend an entire life in an institution if there are more home-like alternatives, the state began moving patients to smaller facilities in residential communities.

Melissa was released to a group home. In the next five months, she smashed her head against a plate glass window, ran into traffic and tried to stick the fingers of another child into a light socket, according to her mother.

In December she was placed in the locked Fairview Developmental Center here and again has done just fine. But her mother worries she could be released again.

Fed up and scared about the mass transfers, she and three other parents of severely disabled patients sued in federal court late Friday to prevent state courts, the Regional Center of Orange County and other government agencies from moving their children without their consent.

A federal judge already has banned transfers of severely disabled patients who are not represented by parents or legal guardians. The parents who sued Friday want all transfers of patients to be halted.

The suit covers two types of patients: “medically involved, fragile” patients who have lived at Fairview for decades, and 175 patients transferred from Camarillo, which has been closed, who have “significant behavioral or impulsive disorders [and] are a danger to themselves or others.”

The parents say community placements don’t offer constant medical monitoring by properly trained staff, and their children risk death or serious injury in the less restrictive settings.

“There are a small number who can’t function outside,” said Melissa’s mother, Debby Tisdale of Paramount. “They need the structure of the developmental center. They need the boundaries and security. I want to sleep at night knowing that Melissa hasn’t been moved.”

Defenders of the transfer policy say there’s another issue: the wishes of the patients themselves. No matter how the parents feel, they say, many of the severely disabled want to move out of the state institutions.

Francis Hardiman, the attorney representing the parents, disagreed: “If you are brain-damaged and the court has made the determination that you lack capacity, how can you suddenly have capacity to make that decision? I’m not aware that you can suddenly grow new brain cells or that your intellectual capacity can suddenly improve.”

The lawsuit has been joined by the California Assn. of State Hospital Parents Councils for the Retarded, a statewide coalition of family groups at each of the developmental centers.

“We’re doing this because, No. 1, unfortunately by virtue of the aging process, a number of clients in developmental centers have parents who are dying off,” said Robert Cross, vice president of the group, whose 39-year-old daughter is at Porterville Developmental Center. “You get sick, old, and die, and they do whatever the hell they please with your child. There’s an intimidation factor going on, and it’s an ugly scene.”

Bill Bowman, executive director of the Regional Center of Orange County, which oversees 10,000 disabled people and arranges the transfers, said he did not know about the latest court action but said parents are not ignored.

“Parents and consumers and their wishes are absolutely our No. 1 priority. We first and foremost want to honor their wishes,” he said.

Bowman said that in the vast majority of transfers, parents and patients agreed on the move.

In a handful of cases, he said, “the consumer and their family may be at odds. In that situation, frankly, we leave it to the courts to decide.”

Defenders of the transfers said a patient’s choice should be honored, even over the objections of parents.

The fact that many patients are retarded and unable to speak does not stop them from having opinions, and those opinions should be listened to, said Ellen Goldblatt of Protection and Advocacy Inc., a nonprofit legal group.

“Even those who cannot speak, there are people who know them well and who know by their behavior, their smiles, their actions, what they are saying,” Goldblatt said. “They have communication systems.”

The parents’ motion was filed in U.S. District Court in Santa Ana as part of a suit filed by a doctor at Fairview Developmental Center who is also fighting the transfers.

Judge Gary Taylor earlier this year temporarily halted the state’s transfer of unrepresented patients into less restrictive settings. The transfers began in 1993 in response to a court order known as the Coffelt agreement, named after a father who sued to move his son out of a state hospital and into a community setting. Statewide, about 3,500 patients have been moved since that agreement.

Cross of the state parents’ group said many parents objected to the Coffelt agreement but didn’t realize until too late that it would result in mass transfers. He and others argue that state officials eagerly agreed to settle the Coffelt case because it gave them a loophole to move out thousands of disabled patients and save money.

Bowman of the Regional Center, one of 21 centers statewide that have aggressively implemented the Coffelt agreement, said that is not true.

“Certainly a strong financial case can be made. . . . But people mistakenly attempt to draw some sort of conclusion that this was a cost-saving measure. . . . These folks, their lives are so much more valued and valuable to them now. It has nothing to do with financial considerations.”

For decades, severely disabled people were committed for their entire lives to developmental centers, which are locked institutions. In 1981, a judge ruled that being committed for life was wrong and ordered annual hearings for each patient to determine whether the developmental center was the “least restrictive” available home. Until 1993 and the Coffelt agreement, Bowman said, those hearings were largely routine affairs, with automatic commitment for another year. After that, the annual reviews and hearings became intensive team discussions about how to find the best placement for each patient, Bowman said. Angry parents argue that the hearings are designed for one thing only: to figure out how to have their children removed from the developmental center as soon as possible.

And that transfer, they argue, is not freedom--it is life-threatening for adults with IQs as low as 3 who do not understand hazards such as glass window panes or busy traffic outside front doors, and who no longer receive around-the-clock medical and nursing care.

A case in point, they say, is Raymond Kawaguchi, 38, with an IQ of less than 34, incontinent, severely spastic, in a wheelchair and prone to choking. His mother, Margaret Reade of Lake Tahoe, spent $20,000 in legal fees fighting it, but regional center officials and the public defender’s office persuaded an Orange County Superior Court judge that her conservatorship of Kawaguchi should be ignored and that he should be transferred out of Fairview into a group home. Kawaguchi had been taken on visits to the home and said he wanted to move there.

“They brainwashed him behind my back,” his mother said bitterly. Two of his doctors from Fairview testified the move could be a grave risk to his health.

Kawaguchi was transferred in 1996 to Via Larga Intermediate Care Facility in Laguna Niguel. On New Year’s Eve, Reade said, she learned from a phone message that her son was hospitalized in intensive care for severe dehydration, pneumonia and an acute obstruction of the bowel. No one from the nursing home was at the hospital when she got there, she said. Later, Raymond was taken back to the same home.

“Exactly what I was so terrified would happen, is what happened to my son,” Reade said. “If I hadn’t gotten to that hospital, he would be dead now.”

She made phone calls to have Kawaguchi returned to Fairview, but gave up after a few days. “I’m fighting the state of California. It’s like fighting God,” she said.

She is one of the four parents named in the motion.

Robin Schroeder, chief executive of the company that owns Via Larga, said Raymond only had pneumonia and that he had also suffered from the disease in Fairview, because he can’t move around. She said patients at Via Larga are routinely taken to the emergency room if they are ill precisely because they are so fragile. She said she would love to be able to provide around-the-clock medical care for her clients, but Medi-Cal does not provide enough money.

Kohler and defenders of the transfer policy said no matter how grave a risk it presented to his health, Raymond’s wishes were paramount.

“He does not want to come back to Fairview, from what I understand,” Kohler said. “He’s happy where he is. It’s his decision, his life and his choice. The fact that he’s developmentally disabled should not mean his choices shouldn’t be valued or respected.”

Even if, as Kawaguchi’s mother claims, her son’s life is endangered, Kohler said he should be allowed to remain in the group home “if that’s his choice.”

Goldblatt, the attorney for the disabled, said, “Just as with people without disabilities . . . we don’t always have to follow what our parents say when we are adults.”

Goldblatt said parents’ objections are grounded mainly in fear, not reality. The vast majority of developmentally disabled who have transferred into group homes are happier, she said.

The benefits are as simple as having one’s own room, deciding what to watch on TV, when to turn out the lights at night, advocates said.

“It’s the small, mundane things of life that people experience when they live in the community rather than in an institution,” Goldblatt said.

Some parents do want their children transferred. Trudy Almaleh of Whittier says moving into a group home has been good for her 47-year-old son, Gary, who is retarded and schizophrenic.

Gary Almaleh lived in Fairview for 15 years and did not want to leave. But his mother was eager for him to transfer. She said his nose and his eye were damaged in a fight there. In this case it was her wishes, not those of her son, that prevailed.

Still, it was not easy. Gary Almaleh lived in two other homes before he settled happily at one in Rosemead, his mother said.

But other parents feel their children are safe only in the more restricted facilities.

Richard Sancho of Huntington Beach says his 42-year-old son, also named Richard, must remain at Fairview to stay alive. Richard Sancho Jr., brain-damaged at birth, functions at the level of an 18-month-old.

“If they put him out in the community, I’m positive of what would happen,” the elder Sancho said. “He’d get sick or he’d get mistreated. . . . He can’t defend himself.”

The retired Marine suffers from cancer and “would prefer that his last days not be used to fight placement,” according to court papers.

Sancho is one parent who fought the law and won. Dr. William Cable, Fairview’s medical chief of staff who is challenging patient transfers, was recently appointed by a federal court to be the younger Sancho’s conservator.

The idea of integrating his son into the community is ludicrous, Sancho said.

“He will never enter the community. Anyone who speaks in those terms is an idiot. Fairview is his community.”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Troubled Fairview

The transfer of patients out of Fairview Developmental Center to group homes and other facilities has prompted lawsuits by the parents of patients as well as by one of the center’s doctors. A look at the facility and its population:

Opened: Jan. 5, 1959

Bed capacity: 1,228

Current population: 872

Staff size: 1,350

Admissions: 199*

Discharges: 92*

* July 1, 1996, through June 30, 1997; 175 of the admissions were transferred from Camarillo State Hospital

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Population Profile

Fairview’s population is mostly male; eight in 10 suffer from speech or language impairments and nearly nine in 10 require specialized health care equipment:

Male: 61%

Female: 39%

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Impairments

Speech/language: 79%

Profound intellectual: 69%

Severe intellectual: 19%

Mild/moderate intellectual: 12%

Visual and hearing: 45%

Visual: 27%

Hearing: 13%

Deafness: 18%