A world apart: Inside Sonoma Developmental Center
Brien Farrell remembers the day but not the pain. Maybe the feelings are fuzzy because he was only 6. But he suspects the wound to his family left by separation was so deep he simply “blocked it out.”
On that day in 1958 Tom Farrell and his wife, Evelyn, pregnant with their fourth child, piled Brien and his two younger sisters into the station wagon and made the half-hour drive to Eldridge, just past the village of Glen Ellen. They returned to Santa Rosa with only two kids in the back seat and an emptiness that would linger for decades.
Missing was Susan, a dark-haired, dark-eyed child of 4. Tiny, self-contained, unable to speak and averse to touch, it had become painfully apparent she was not developing like her siblings.
It was a time when there were few services available for the disabled outside of institutions. Even Evelyn, a trained nurse, felt unequipped for Susan’s special needs. She was autistic and had an IQ of 17. A concerned family pediatrician recommended she be admitted to Sonoma State Hospital.
Susan would come home for holidays and visits but never to live. She would remain forever to her family a “Heavenly Guest,” as her father described her in a poem that became an anthem to the daughter he relinquished but never stopped loving with a longing so fierce that it turned him into a national crusader for the disabled until his death last year at 88. A building at Sonoma Developmental Center bears his name.
Separating from Susan, Brien Farrell remembers with a wince, “was the hardest thing my family ever had to do. It wasn’t done impulsively.”
When Susan arrived 57 years ago, “Sonoma” as it was often called, had 3,200 residents, many of them children, a waiting list half as long and a uniformed staff of 1,300.
She is now one of fewer than 400 residents who remain on a 945-acre campus targeted for closure under a proposal by Gov. Jerry Brown. With 1,305 jobs, the center is Sonoma Valley’s largest employer. The state Department of Developmental Services, which oversees the center, is scheduled to submit a plan to the Legislature this week to shut down Sonoma Developmental Center by the end of 2018.
Many disability advocates applaud the move, saying that large institutions are an anachronism.
“It’s an outdated mode of treatment. As a society we don’t segregate groups of people any more based on anything,” said Katie Hornberger, director of the office of Clients’ Rights Advocacy with Disability Rights California, which advocates for the disabled. Her office works under contract to the Department of Developmental Services, which oversees the care of 280,000 individuals, most served by 21 community-based centers. Only about 1,030 residents live in the three remaining developmental centers at Sonoma, Costa Mesa and Porterville.
“We wouldn’t buy a 1,000-acre parcel and say ‘this is just for women or one racial group.’ When we look at why we integrate people, the benefits are amazing,” Hornberger added, noting that communities become more sensitive and accepting while the disabled themselves are given opportunities they didn’t have before.
But some families, like the Farrells, feel blindsided by the news that the state intends to shutter the Sonoma center so fast. For their loved ones, Sonoma is not a cold and impersonal institution, but home. Despite a state pledge of nearly $50 million to transition the remaining residents into community homes and services, some families fear inferior care will put their relatives at risk. At a community forum last week, they blasted the state’s plan to shutter the center, saying it did not adequately address the long-term needs of existing residents.
Family members of SDC residents are not alone in their concerns. A report earlier this year by the Association of Regional Centers warned that years of underfunding of community-based services for the developmentally disabled have left the system “on the brink of collapse.” Service providers have been forced to trim their standards or close altogether, and regional centers have increased their caseloads to “above legally required levels.” The impact of underfunding, the report said, has left the developmentally disabled increasingly “without adequate services and supports to meet their needs.”
“I do think people safely transition. But there are gaps in community care and people are falling through them,” said Kathleen Miller, who heads the vocal Parent Hospital Association at Sonoma Developmental Center.
Still, the state’s developmental centers have had their dark chapters, among them overcrowding, allegations of forced sterilization, and medical experiments done on people with cerebral palsy at Sonoma in the 1950s. In the 1990s, after a teenage boy was found injured and lying in a pool of blood in a shower, a class-action lawsuit resulted in a settlement that stepped up the exodus of residents from developmental centers.
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