Changes at Fairview Stir Unease

To the casual observer, it would have been hard to tell that Matthew Preston was in danger. Preston, a profoundly retarded and disabled man of 41 who lives at the Fairview Developmental Center, cannot talk or walk or even smile.

On a day early this winter, Preston sat in his wheelchair, trembling. He did not cry out or even weep, as he sometimes does. But the shaking, it turned out, was a sign that he was close to dying. Later, a doctor would determine that his kidneys had stopped functioning and his body was filling with poisons.

Joe Preston credits the Fairview staff with saving his son’s life. They knew him well enough, the father said, to read the small signs of change. Also, a doctor is always on the premises at Fairview. But Matthew Preston may someday have to leave the institution his father admires.

In accordance with a lawsuit settled in 1994 that requires the state to reduce the number of mentally retarded people living in its institutions over a five-year period, about 400 people must be moved out of Fairview Developmental Center into either group homes, their own apartments, foster care or other living arrangements. About 200 people have already left Fairview; 100 of those people were moved out in the last year.

The lawsuit was initiated by the father of a teenager after he learned his son had been found bruised and bloodied in a bathroom at a developmental center in Sonoma County. The suit was later expanded to represent all residents of the state’s seven developmental centers and contended the state did not provide enough alternatives for living outside of institutions.

The settlement pleased those who wanted their relatives to have more access to group homes, where they could receive more personalized care in a homelike setting. But it has frightened and angered some who were satisfied with the care their relatives receive in developmental centers.

Many who opposed the mass movements from developmental centers fear that in the next few years the state will close all such institutions and push everyone into group homes and other such facilities, where they believe services will be inadequate.

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Already the state has decided to close the Stockton Developmental Center, and earlier this month Gov. Pete Wilson announced plans to close Camarillo State Hospital in Ventura County by the end of 1997 and relocate residents either to other developmental centers or to group homes.

Proponents of the state’s moves point out that some residents--many of whom have spent most of their lives at the institution--have found a whole new world to explore and enjoy in their new environments. For in spite of caring and competent staff members and the homey pictures decorating its buff-colored walls, Fairview is still an institution and a group home is more like a real home.

“My son is very happy now that he’s in a group home and he was never happy at Fairview,” said Eleanor Kenny of El Cajon, whose son, Roger, moved into a group home in La Mesa.

“I have nothing against Fairview,” she said. “They did a lot for Roger, they really helped him out a lot and they always encouraged us to come up there. But it is an institution.”

But some relatives of Fairview residents, such as Joe Preston, see the movement to shrink the population in mental institutions as a threat to services that are vital to their loved ones.

“If Matt lived out in the community he’d probably be dead by now,” Preston said. “No group home has a doctor on the premises, and they probably would have looked at him and said ‘Well, we’ll see how he’s doing tomorrow’ before taking him into a hospital.”

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Preston, whose 38-year-old daughter, Donna, also lives at Fairview, is part of a support group, Family and Friends of Fairview, which counts about 1,000 members, although a smaller core group is active.

“We respect those people who want to have their children in the community and think they should have all the services available to them,” said Matt Guglielmo, a San Marino resident whose daughter is at Fairview. Guglielmo is president of Family and Friends of Fairview. “But we believe in the developmental center as a continuum of care.”

Retarded people who function on a high level certainly may be best accommodated by group living, Guglielmo said. But the people he refers to are not only profoundly retarded but have physical disabilities, illnesses and extreme behaviors.

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Developmental centers, the Fairview group says, have everything their relatives need: medical and dental services on the premises, workshops, classes and paid jobs for their relatives, caring staff and recreational areas.

“The problem is that the public looks at it as though it’s some sort of ‘One Flew Over the Cuckoo’s Nest,’ and it’s not,” said Guglielmo.

They say facilities such as group homes simply are not prepared for the intense amount of supervision and care their relatives will require.

“If I had a community home that would meet all my daughter’s needs she would be there,” said Norman Fulco, president of the parents coordinating council at Lanterman Developmental Center in Pomona.

“But it’s the immediate access to a physician that makes a difference,” Fulco said. “I think the truth is that there’s a movement within this country, and the attitude is, ‘Let’s let people die at home before their time in order to make a buck.’ ”

Fulco was present at a meeting of Fairview relatives, and they nodded in agreement. The truth, they say, is that society does not care whether profoundly retarded and disabled people live a long time.

Even well-meaning people are often unaware of how much care their relatives will need, said Alexine Wells, another member of the group.

“My brother John is mentally retarded with cerebral palsy and behavior problems,” Wells said. “If John were to come into your house, first he would rearrange the room, and if we were to discipline him he would proceed to break up the furniture and go into such a psychotic state, kicking and screaming, that he could either hurt himself or someone else.

“I love my brother as much as myself, but when I bring him home for Christmas it takes four adult people 24 hours a day to handle him. Do they have that in a group home?”

A few days after the meeting, Wells visited her brother, John Lehoy, at Fairview. After hugging her, Lehoy led her by the hand across the grounds to the building where he works as a janitor under the supervision of vocational instructor Mark Barr.

“I love Mark!” Lehoy said, hurrying his sister along. Once inside, he showed Wells how he sweeps the floor, vacuums and empties office trash baskets, now and then turning to look at his sister for approval.

“That’s right, sweetheart, I’m proud of you!” Wells said, beaming at him. But while he went to show another instructor some pictures taken of his visit home at Christmastime, a look of concern settled on Wells’ face.

“It’s a constant worry, that he could be inappropriately placed,” she said. In particular Wells is worried because Lehoy can speak some words and walk, abilities that make him appear to function at a higher level than he truly does, she said.

“People look at him and think, ‘Oh, he’s doing all right.’ But they have no idea what they’d be getting into,” she said.

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The 1994 class action settlement, brought by Protection and Advocacy Inc., was never meant to reduce the issue to a question of developmental centers versus group homes, legal advocates say. Instead, the suit contended that the clients in such facilities were unable to choose community-based living because California had neither provided a sufficient number of community-based residences for them nor ensured proper care in those that did exist.

Dawn Lemonds, director of South Coast Regional Project, which is responsible for moving residents out of Fairview, said she understands relatives’ fears. But she believes the quality of Fairview residents’ lives improve when they move into a home.

“Our project is about having new lives that are more typical, more normal and less removed from society,” Lemonds said. “if you think about how your home impacts your life, not just the building but the sense of home and the feelings involved and how that influences your soul, well that’s what I’m talking about.”

Of the 200 people who have been moved out of Fairview since 1992, about a dozen subsequently have been relocated because of difficulties in their new home. Of the 100 people moved out of Fairview last year, two ultimately returned to the facility, Lemonds said, “But we have many, many cases where parents are satisfied.”

Martha Morales is one of those parents. Her daughter Christina, 41, who is profoundly retarded, deaf and mute, moved into the Hall Home in Santa Ana in September 1994 and has blossomed with the change, Martha Morales said.

“That home is just wonderful,” Morales said. “At first I was worried about moving her out of Fairview because she likes to get her hands on anything sharp--knives, razors, scissors--because she loves to shave and cut off her hair.”

In some ways, Christina Morales’ experiences at Hall Home give weight to the arguments of those on both sides of the issue, showing that group homes can lack the close supervision of an institution but at the same time can promote individual growth.

While nobody was looking, Christina Morales did indeed cut herself in several places shortly after moving to the group home, and proprietor Rosie Hall took her to the hospital. Soon, however, caretakers at the home realized she was not so much intrigued by knives as bothered by body hair, and now Christina Morales is allowed to shave herself. No other incidents have occurred.

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Christina Morales has a penchant for all things feminine--lace, makeup, perfume and bubble bath. Slim and elegant in gray stirrup pants and a white shirt, she greets visitors with a handshake and blinks several times to show her pleasure.

Her day begins at 8:30 a.m., when after breakfast she goes to a job delivering fliers until 3:30 p.m. Back at the Hall Home she has a snack and watches television.

Hall runs two homes that are side by side. Both homes were immaculate during a spur-of-the-moment visit by reporters, and the women, many of whom cannot speak and some who cannot hear, are well groomed and dressed. Hall cares for five women in the home where she lives, and Gladys Ortega, 25, cares for six women in the house next door, where Christina Morales lives.

Late last week as evening fell and visitors chatted in the kitchen, Christina Morales walked out into the spacious backyard and sat down on the swing set. Three times she gave herself a push, swung and then used her feet to stop.

It is a accomplishment that took her about three months to learn, Ortega said. After climbing off the swing, Christina Morales walked back into the house and blinked several times.