Finding a place for the state's severely mentally disabled

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.