Sonoma Developmental Center parents speak out

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.”