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Sonoma Developmental Center parents speak out

STATE SEN. NOREEN EVANS and 1st District Supervisor Susan Gorin told family members of Sonoma Developmental Center residents that they are fighting to keep the facility from closing.

STATE SEN. NOREEN EVANS and 1st District Supervisor Susan Gorin told family members of Sonoma Developmental Center residents that they are fighting to keep the facility from closing.

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At the Sonoma Developmental Center on Saturday, John Doyle, chief deputy director of the California Department of Developmental Services (DDS), told a gathering of parents and guardians of SDC residents, “Resources must be available in the community before transition takes place. We’re aware of the concerns and we take them very seriously.”

The transition Doyle was referring to is the expected movement of an undetermined number of residents from the 123-year-old facility on the outskirts of Glen Ellen, to smaller, cheaper and ostensibly more efficient group homes in adjacent communities, most or all of which do not yet exist.

And while Doyle sought to assuage the anxieties of family members who have had sons and daughters, sisters and brothers for decades in the Arnold Drive facility, most of the 17 people who addressed a panel of legislators and legislative aids expressed little or no faith in DDS plans to provide a satisfactory and harmonious transition from SDC into the broader community.

Assembled for an annual legislative affairs meeting, the March 8 event was sponsored by the Parent Hospital Association (PHA), a group of family members, guardians and advocates for SDC residents.

A woman who said her brother had been at SDC for 80 years, told the gathering, “You do not get the service on the outside you have here. My brother had glaucoma and it was caught immediately and cured … Here they get a well-balanced meal … Outside the group homes, you see them eating at McDonald’s at 10 o’clock in the morning.”

A woman named Becca said her brother has been at SDC for 35 years and is so severely handicapped he needs 24-hour care and a crane is required to lift him out of bed and into a chair. “My brother would not survive if he were taken out and put in any other home,” she said.

Thomas Chesterton, a retired minister whose son has been at SDC “for many years,” added a unique perspective on the consequences of a move from the center.

“I have heard very little about addressing the moral and spiritual needs of the patients,” he said. “It’s a moral dictum that society is judged by how well it treats the most vulnerable among them. For my son, this is the only place he can go to church. There is a church service here, and I think it’s very important that he can have a chance to receive communion.”

Closure of SDC has become something of a foregone conclusion since a state task force report on developmental centers was released in January. That report, prepared following deliberations from a wide range of stakeholders, but relatively few patient advocates, foresaw the ultimate transition of a majority of SDC patients into group homes in adjacent communities. That model, dictated where possible by the 1969 Lanterman Act, assumes that care and quality of life can be delivered at an equal or higher level in smaller living environments and far less cost.

Estimates of the annual, per-patient cost at SDC are now well over $300,000 a year, a level that no one considers sustainable.

But few who stood in line to address the gathering believed alternative, community housing would be appropriate for their loved ones.

Alice Nemon, a member of the PHA board with a daughter who has spent close to 50 years at SDC, acknowledged that, “The independent living movement is wonderful. Many people were in institutions that didn’t belong there. But that’s not the population we’re talking about here. The population we’re talking about are not the mildly developmentally disabled. They’re already out of here. There are people who really belong in the community … but not the ones we’re talking about.”

Sharing the panel with Doyle and nine others was state Sen. Noreen Evans, D-Santa Rosa, who has introduced a bill – SB 1428 – requiring state officials to confer, communicate and cooperate with local officials and the community at large in shaping the future of the facility. Part of her intent, she said, was to create “a much more formalized communication process, and better reporting to SDC parents regarding developments in Sacramento.”

Evans acknowledged that, “The state has determined it’s not a sustainable model – the decision has been made.”

But, she added, the residents at SDC must still be afforded their “basic dignity and happiness,” and the right “to be surrounded by services and family. One size does not fit all. We have to have an array of options and alternatives for those who don’t fit” the state’s plans. She insisted the state must be “held accountable” to ensure that the specialized services at SDC remain available, “and right here.”

First District Supervisor Susan Gorin was also on the legislative panel, and said she is “advocating for continuing services for some who remain here.”

Gorin said her goal is to preserve services on-site, “and perhaps broadening the services for a broader population.”

Vowing to give SDC “my all for at least three more years,” Gorin added that, “We need to make a place for staff members, and preserve the beauty and the therapeutic value of the land surrounding the developmental center.”

Evans concluded her remarks to the gathering by addressing what she called, “the moral issue. Where we spend our money reflects our moral values … We’ve seen the recent developments, the state is backing away from state parks, from higher education, from K-12, from developmental centers. The only place we haven’t reduced state spending is on prisons. The state is currently spending on prisons about 11 times the amount for elementary schools.”

Evans said, if nothing else, “We should make SDC, at least, a center of last resort … keep it and honor it.”

 

  • Celeste Winders

    My biggest question for the state is this: Will the group homes and supportive living situations be subject to the same unannounced inspections and audits that the sate facilities have had? Will the feds and the state auditors now begin inspecting and auditing group homes/supportive living facilities? At SDC there were several levels of audits and inspections several times a year. Individual’s records were combed through, facilities were not only inspected for safety but also for quality of living (inclusiveness, activities, cleanliness & accessibility). Will that happen in the community because that is not the case now? I highly recommend everyone watch the short (about 35 min) documentary The Men of Atalissa. These high functioning developmentally disabled men lived in this small town for decades, the community knew them by name and cared for them and and the town had no idea that the men were being neglected, exploited and abused right under their nose. This is not a story of long ago, this is fairly recent… this happens in the community, a lot.. and the thought of something like that happening to the the individuals who are currently at SDC makes my stomach turn. Who is going to protect them financially as well? Look what happened to the clients of North Bay Regional Center who had their funds stolen from them for years by their social worker and NBRC had no clue. That just happened this month. These things happen because unlike at a state facility there are not the unannounced audits and inspections. Those need to be put in place. If you are going to remove people from the home they have known for decades then they have the right to the same (or more) protections and care in the community that they have had at SDC. As of right now, those systems are not in place and that is terrifying to the parents, friends and family of the vulnerable individuals who reside at SDC. I think about them constantly, I worry about them. Many of these folks have been in my life since I was a little girl, I don’t want anything to happen to them. These are real people we love, they are not pawns in a game. They deserve the best. I want the state to answer the questions and stop telling everyone they are still working on it. If they are going to close it all down, they better have a plan of protection and transition in place.

  • Ma Kettle

    If anybody is interest Sonoma Land Trust along with 9 other associations and committees are very interested in preserving SDC. Join the effort. If you Google “Sonoma Land Trust org Sonoma Developemental Center” the PDF will come up. Have a read….And welcome back John McCaull to Sonoma Land Trust….John is driven to help save SDC from developers. He lives in the Valley and he is good!