Finding a place for the state’s severely mentally disabled
Jim Grivich had always known that one day the letter would arrive. He’d worried about what to do if it came, discussing it with his wife over dinner and with his mother as she lay in bed, dying.
Still, when he got the letter in 2006 informing him that his brother Bobby would have to leave the state institution where he had lived for more than three decades, he was dismayed. Grivich scrutinized it, looking for a way out. His only chance to fight, the letter said, would be a hearing at a mental health court in Los Angeles.
At stake was the future of a severely developmentally disabled man with extraordinary needs. Now 60, Bobby still smears feces on the wall, hits people when he is around large or noisy groups, shouts “no” when his schedule is disrupted. He also has a sweet side, smiling when someone takes the time to play peekaboo with him.
For four decades, California has been trying to place developmentally disabled people like Bobby in less restrictive facilities, moving them out of large state hospitals and into community care.
Now, as the state nears the end of the deinstitutionalization process, it is faced with finding new homes for its toughest cases. And it is coming up against increasing resistance from families.
From the time he was in his 20s, when his mother realized she could no longer accommodate his needs, Bobby has lived at Lanterman Developmental Center in Pomona. He sleeps in a dorm-like room with two other men, spends much of his day in group activities and eats well-rounded meals that have been approved by nutritionists. Grivich believes his brother is content and well cared for; his simple needs always met.
Grivich, of West Covina, promised his mother before she died of colon cancer that he would look after Bobby and worried that his brother would die if he had to move.
Grivich and others joined the resistance movement: fighting to save what remains of some of the state’s most-disquieting institutions.
The policy affects the future of 2,761 mentally retarded, severely autistic, or brain damaged Californians, the system’s eldest, frailest and neediest who have highly trained caretakers always at their sides.
When Bobby Grivich arrived at Lanterman Developmental Center in Pomona, the facility was the oldest institution in the state for the developmentally disabled. At the time, more than 13,000 people lived in the 12 publicly funded institutions statewide. Lanterman alone housed more than 2,800 at its peak.
Since 1969, five institutions have closed and another is slated to shutter this year. At Lanterman, 498 people remain, sharing 320 acres, 1,382 paid staff members, 86 buildings and a $111.8-million budget.
In this spacious world, Bobby moves haltingly through the mission-style buildings. He stops and plays with a rattle, or sometimes a tambourine. More often than not, he sits in the corner, a lip pressed against his nose.
Caregivers roam about the day room, playing guitar and singing long-ago songs like the Beatles “Yellow Submarine.” Bobby has not lived in the outside world since the song was a radio favorite.
Some of the attendants know Bobby so well they understand the gentle gestures, such as a hand on the shoulder, that work best to move him peacefully from one place to the next. And when he strays from the group, as he likes to do, the wide open space and slow moving cars allow him to walk unharmed.
At lunch, one of his usual attendants quietly separates him from the rest of the group so that he can sit at a table alone with soft foods. No risk of fighting over food that way.
Community settings, however, have been widely accepted as an improvement for the vast majority of developmentally disabled people, in part because hospitals had earned a reputation as purveyors of lobotomies and shock treatments. Some supporters of community settings say the freedom found on the outside gives developmentally disabled people “the dignity of risk.”
But the Griviches and a growing number of other families say that risk threatens too much.
“It’s a matter of life and death,” said Terry DeBell, president of the private organization for families of developmentally disabled people in California institutions.
Since Bobby’s arrival at Lanterman in 1969, staff reports always concluded that the barriers separating him from the outside world were insurmountable. Doctors said his IQ is eight, and that he never will develop past the level of an average 18-month-old. He lacks strength in his bones, chokes on food and wanders away without any sense of danger.
Jim Grivich’s reasons for keeping Bobby at Lanterman were manifold: staff at the institution have more demanding credentials; he believed more safeguards were in place to prevent Bobby from harming himself or others; no one was making a profit off Bobby’s care; and his mother insisted on it as her dying wish.
Jim took responsibility for Bobby when his mother died in 2003. Years had passed since he had driven down the long tree-lined driveway at Lanterman, and he barely remembered the 80-year-old expanse of mission-style buildings, nor the tawny hills that surround it.
On the surface, Lanterman resembled the college campus his mother once had hoped Bobby would attend. New patients trickle in -- five in 2007, whose conditions were so severe there was no other place for them -- but far more are holdovers from long-ago decades. The average tenure for residents living at Lanterman is 43 years. The oldest is 84.
Almost all of Jim’s memories of his brother were formed before Bobby turned 21, when his mother still woke to the sight and odor of his bedroom covered with feces. At that age, she finally agreed to institutionalize him. “She did not want to chain him up or lock him up,” Jim said.
When Jim became Bobby’s conservator, he found that his brother had become an old man. He had the same long nose, but his hair had grayed and his cheeks had hollowed.
Socially, he was still an outcast. He avoided others, often sitting in the corner with his chin in his hand. “He’s a little bit of a loner type,” said Monica Lopez, a Lanterman staff member.
He rarely spoke, and when he did, it was with the disposition of a toddler. He recoiled when others try to touch him. Jim doesn’t try anymore.
“He doesn’t know who I am,” Jim said.
The institution was the first of its kind in California when it opened in 1917 as the Pacific Colony for the “insane”, “feeble-minded” and “high-grade imbeciles.”
Some of the first residents had been stowed in attics by shame-stricken families. The state’s approach was not entirely different. The Pacific Colony, for instance, was far from existing railroad lines, and it was difficult to reach.
But it tapped into an overflowing need. By 1949, the 1,925 residents at Lanterman outstripped the institution’s capacity.
In those early decades, some residents were sterilized, others were restrained for days. When patients displayed excessive anger, lobotomies were performed.
Longtime figures in the mental health field remember public opinion rising up against the institutions as stories of atrocities leaked out. When “One Flew Over The Cuckoo’s Nest” was published in 1962 -- a hallmark novel about a fictional insane asylum in Oregon -- it helped cement the public perception that mental institutions were barbaric places.
In 1963, a reporter for what was then the Santa Ana Register wrote an expose after visiting a state institution for the developmentally disabled in Costa Mesa, finding the conditions to be filthy and the residents to be ill fed and unwashed.
Vivian Walter, the mother of a developmentally disabled person and a prominent advocate with the Assn. for Retarded Citizens, criticized the system during testimony in Sacramento.
“There were sights there that will haunt me for the rest of my life,” Walter later recounted in a documentary before her 2002 death.
The Legislature upended the system with the passage of the Lanterman Act in 1969, named for Frank D. Lanterman, the assemblyman who sponsored the bill. For the first time, a law laid down a definitive preference for community placements over institutional commitments for every developmentally disabled person in the state.
It placed an emphasis on the rights of the developmentally disabled to make basic life choices, even if those came with the risks of living in the outside world. In 1979, Bobby’s home was renamed after Lanterman.
In five decades, people at the Pomona institution and others like it had been officially recognized as “inmates,” then “patients”, and finally “consumers.” A “consumers bill of rights” is posted throughout the grounds at Lanterman, emphasizing the right of residents to live the most self-directed lives possible.
Still, the facility is bedeviled by occasional claims of abuse.
Last year, the U.S. Department of Justice wrote to Gov. Arnold Schwarzenegger that, “we find that residents of Lanterman suffer significant harm and risk of harm from the facility’s failure to: keep them safe; provide them with adequate training and associated behavioral and mental health services; and provide them with adequate healthcare.”
The most serious charge, investigators said, involved a man who was found stomped to death in his room in 2002. Suspicion pointed mostly to his roommate, but the Justice Department said a Lanterman staff member could not be eliminated as a suspect. In any case, the investigators said the institution should have prevented the death.
The investigators also alleged that Lanterman staffers have not always adhered to stringent reporting requirements when a resident has to be restrained by force or chemicals.
Family members, however, took the report as an encouraging sign, not an alarm to rescue loved ones.
“We take these allegations seriously and made sure they were addressed, but this sort of report is exactly why we like Lanterman. Every organization has its bad apples. This type of scrutiny of their actions never would have taken place in the community,” said Robert Hazard, who leads the family group at Lanterman and whose sister lives there.
“I’m not worried,” Jim Grivich said.
Every year, court hearings are scheduled in a Los Angeles mental health court for each person at Lanterman to determine what is blocking their transfer to the outside world. The presumption is that each person’s goal is to live beyond the walls, in the community. If the reason for staying isn’t good enough, a judge orders them out.
In some cases, advocates allege that the urge to push residents into the community is so single-minded that innocuous or meaningless acts are interpreted as evidence the person wants to leave.
One man packed his radio to take with him whenever he went anywhere, an action that was interpreted as meaning he wanted to pack up and leave the developmental center. Advocates pointed out that he died a year after he was moved out.
Terri Delgadillo, director of the California Department of Developmental Services, defended the system. “When decisions are made,” she said, “that decision is an extremely comprehensive decision, and it involves an extremely comprehensive process. If a person has nonverbal communication, that might be one piece, but it is not the whole piece.”
In Bobby’s case, furtive signals weren’t the issue. A placement team led by case worker Rhoda Tong in January 2006 determined that his needs and desires were the same as always. And, she determined, there was a new group home that would finally meet those needs.
Jim and his wife, Ann, took Bobby for a visit to the San Gabriel Valley location. Jim took out his notepad and camera and -- leaning on his experience as a college administrator -- documented a list of violations, including exposed electrical wiring and a bedroom with no direct door or window leading outside. Jim reported the violations to the city, which issued citations.
At least on this day, the Griviches felt they had won, if only the promise of more time in limbo for Bobby.
Tong, Bobby’s case worker, has since been asked to prepare a report every few months on what barriers remain to moving Bobby to a different group home.
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