Story & Photos: David Bolling
The state says the developmental center has to close by 2018, but no one knows where to put the residents, how much it will cost or how many will die.
Midway across the Harney Street Bridge over Sonoma Creek, centered more or less in the stream of human activity that still courses through the contracting campus of the Sonoma Developmental Center, there is a small metal plaque affixed to the western railing of the bridge.
There is more meaning in those four words than anyone not familiar with SDC could ever know. More poignant meaning than any Sacramento legislator, any Department of Finance analyst, even any capital-based bureaucrat in the California Department of Developmental Services will know or care.
At the north end of the bridge there is a fresh pile of gravel, the kind used on rural driveways. It is replenished on a regular basis because on a regular basis it disappears.
It disappears because almost every day a middle-aged man with a gray mustache stuffs his jacket pockets full of gravel, walks out into the center of the bridge, right about where that plaque is, and methodically, contentedly tosses gravel into the creek one stone at a time.
At almost any time of year, the creek below the bridge is a moving tapestry of light and color, an avenue of nature, fluid, calming, hypnotic and enduring. The man tossing the stones often seems raptly transfixed by that scene. In a way it defines him, and tossing those stones fulfills him.
His name is Bucky.
No one could rationally argue that providing Bucky with the opportunity to throw rocks into Sonoma Creek for the rest of his life is worth $500,000 a year. That’s the arbitrarily assigned annual cost of housing each resident at SDC. Bucky is one of those residents.
But neither could anyone rationally argue that transferring Bucky to a small group home in a residential neighborhood miles away from the bridge over Sonoma Creek, away from the campus he is free to stroll at will, away from his pile of rocks, will not profoundly change the quality of his life and the pleasure he gets living it.
Bucky is one of the most self-sufficient residents remaining at SDC, the population of which had shrunk to 392 as of early July. He is therefore one of the most likely candidates for early “transition,” the somewhat euphemistic term the Department of Developmental Services (DDS) uses to describe closure of the facility and its nearly 1,000 acres straddling Arnold Drive just outside Glen Ellen.
It is equally certain that wherever Bucky is transferred, there will not be people who can afford to keep him supplied with gravel, even if he then had someplace to throw it. And it is also almost equally certain that, within the more limited and proscribed boundaries of a small group home, there would be no one with the loving concern and lively sense of humor to create a special plaque with Bucky’s name on it.
Life is full of change. It is the one great constant. But change for Bucky is unlikely to be for the better, because it’s difficult to imagine that anything could be better for Bucky than the life he has right now.
The same could be said for the other 391 people sharing the bucolic campus where some of them have lived for more than 70 years. They are among the most severely disabled citizens in the state of California. Many are non-verbal, non-mobile, unable to feed or care for themselves in any way. Others are highly verbal and ambulatory but subject to a variety of behavioral extremes that can put them at risk to themselves or to those around them.
They are cared for by a large staff of mostly skilled, experienced and caring professionals, who are paid reasonably well (far above the minimum wage) and many of whom have been serving the same population for decades. The quality of the care they deliver, therefore, is structured on relationships, sometimes with people who can only communicate with facial expressions and guttural sounds.
Transitioning this population out of SDC necessarily means deconstructing these relationships and shifting the familiar environment of care into entirely different surroundings.
But that transition can be done successfully, insist those who are charged with making it happen, and it has already succeeded at other developmental centers around California.
Or has it?
The alternative model to large, “congregate living” facilities like SDC is the community-based, small-group home. Community living, as it is widely referred to, has become the model of choice in caring for developmentally disabled citizens in part because of widely reported cases of abuse and neglect in large institutions. Abusive conditions at SDC itself contributed greatly to the movement away from developmental centers and into group homes after a 1968 investigation revealed conditions in which residents were “treated like, and consequently behaved, like animals.”
Even after that scandal was publicized, there have been intermittent cases of abuse to residents and lapses in compliance with federal standards of care resulted in loss of Medicare funding in the past year for as many as 240 residents. The money was restored on June 30 for up to two years following the understanding that the center would close by 2018.
But defenders of SDC insist the compliance issues were largely minor infractions and that even the sensational cases of physical and sexual abuse were anomalies that don’t represent the vast majority of staff and resident experiences.
And in public meeting after public meeting, the parents and guardians of SDC residents have risen to praise the quality of care at the facility and to condemn the planning to shut it down.
Their objections to closure are based in part on the concern that no configuration of group homes can replicate the level of services available at SDC.
Those services include:
A licensed and certified General Acute Care hospital, skilled nursing facilities and Intermediate Care Facilities.
Medical, dental and podiatry services, with a pharmacy, radiology, laboratory and anesthesia services.
Design and fabrication of custom-made shoes, wheelchairs, chairs, beds, eating utensils, helmets and other adaptive equipment.
Still, both state and federal policy is committed to the disaggregation of developmentally disabled citizens, and California funds 21 nonprofit, independent regional centers that are charged with the task of assuring appropriate living arrangements for more than 270,000 developmentally disabled clients.
Eight of those regional centers supervise the disposition of SDC residents, and officials from each center have publicly expressed confidence they can and will meet the challenge of finding or creating transition housing for people transferred from SDC.
To that end, the state legislature appropriated $49.3 million in June as a down payment for the transition into group homes.
So far, that transition is taking place only in meetings and memos. After asking an official with the North Bay Regional Center, which serves a client base in Sonoma, Solano and Napa counties, for a tour of a representative facility, this reporter was told there were no group homes for SDC residents available to inspect.
First District Supervisor Susan Gorin says she’s not surprised. Gorin represents the Sonoma Valley and has been leading a coalition of organizations called Transform SDC that is committed to proposing an alternative vision and model for the center.
“Group home options will be extremely limited,” she predicted. “We don’t know where the facilities are going to be located. Assessments indicate 25 to 30 percent will be in Sonoma County, with others in San Francisco, Marin and Solano County. But property is prohibitively expensive in Marin and San Francisco. The obvious solution is continuing some level of care at SDC in conjunction with the regional centers.”
But testimony by parents and guardians of SDC residents presented at a June 27 family information meeting on the SDC campus surfaced an ocean of disbelief that appropriate care could be delivered in the community.
Former Santa Rosa City Attorney Brian Farrell spoke about his sister who “has lived in this safe spot for 25 years” and insisted that a third-party facilitator should be involved in the transition process to represent the interests of residents. “We are also adversaries here; many of our members will retain attorneys to challenge” the transition plan.
Sacramento resident Glenda Smith said her cousin has spent most of the last 57 years at SDC, although she temporarily “transitioned out” 20 years ago. “It was a terrible experience. She was misdiagnosed and ended up in a convalescent home. She became violent and harmed herself. It took her five years to become functional again. She has been well cared for at SDC.”
Several SDC parents expressed concern that data on illness, injury and death at regional center group homes is generally unavailable, making it difficult for family members to judge the level of care in those facilities. Nor is it clear how many behaviorally challenged group home residents are expelled and end up in jail, although one recent estimate concluded that at any one time as many as 200 developmentally disabled are in jail in California. Group-home death statistics are notoriously hard to come by, although a recent study from the state of Georgia revealed that hundreds of “unexpected” deaths have occurred in that state’s community care homes in the last two years.
One parent who did not give his name charged there is “a complete lack of transparency in all aspects of quality of care in community homes. DDS is less than forthcoming on the number of deaths, hospitalizations, people arrested and incarcerated. That should be public information. Regional centers have the mindset that the bureaucrats don’t want to deal with parents and families.”
Hal Belmont, a former board member for the Golden Gate Regional Center, whose brother has lived at SDC for 50 years, told the gathering there was a “simple fix” to the SDC dilemma. He outlined a long-developed plan called Jack London Meadows under which four-to-six-person group homes would be built on SDC property in full compliance with state requirements. “You could start building homes here tomorrow,” he said, but for the political challenge and the arbitrary 2018 closure deadline.
Norm Garcia repeated doubts about the ability of regional centers to deliver the quality of care available at SDC.
“If you truly want us to have faith and confidence in the system,” he said, “you have to have transparency and accountability. You cannot distribute the services from a centralized facility into widely distributed community facilities at the same cost. It will be more expensive.”
Joe Christian said his sister Mary has been at SDC for more than 40 years. He said, “My sister is Down Syndrome, with the mental age of 2. She’s blind and very fragile. There’s no way she’s going to go back into the community and be safe. She is one of those most at risk, and the park-like setting here offers a place where she can walk around and be safe.”
Adding pressure to the efforts of Transform SDC to promote an alternative vision for the center is a recently announced October deadline for the submission of proposals for re-use of the property. Gorin said although the closure date and proposal deadline came as a shock, the group intends to be prepared.
Meanwhile, unaware of the turmoil around him, Bucky continues to toss stones, one at a time, into the never-ending flow of Sonoma Creek.