People who have loved ones living at Sonoma Developmental Center lobbied a state task force in Sacramento Monday to keep the troubled facility open, saying it's better than the alternative of community-based care.
"The next 25 years of Mark's life should not be spent with caregivers who are recruited from Craigslist and promised a wage of $10 an hour," Diane Halcromb said of her 50-year-old brother, Mark Dunkelberger, who has been a resident of the Eldridge facility since 1988.
Halcromb was among several family members to address the task force, which is weighing California's role in providing services to 260,000 of the state's disabled residents, including 1,510 who reside in one of the state's four remaining developmental centers. With nearly 500 residents, Sonoma is the largest of those facilities.
Fighting through tears, Marcella Harris described for the panel the struggle to find quality care for her autistic 17-year-old son. She said she finally obtained a court order for him to be placed at Sonoma, but not before he may have permanently blinded himself, the result of him banging his head against walls and repeatedly hitting himself.
She now fears for his future with the court order expiring and his return to a group home in San Jose.
Harris told the task force that "there's something wrong in the safety net. There's a hole in it."
About 50 people who staged a counter-rally outside the Department of Rehabilitation building called for the immediate closure of developmental centers, which they say have led to rampant abuse of patients, out-dated models of care and a waste of taxpayer money. One woman in a wheelchair held a sign that read, "Institutionalized people equal innocent prisoners."
Kim Williams described her time living at Sonoma as "terrible."
Now living in her own apartment, the 49-year-old disabled woman said she gets to make her life "the way I want it to be."
However, the task force mainly heard from those who expressed deep fears of what would happen to their loved ones should developmental centers close during the day-long hearing.
Robert Defea of San Francisco predicted his 54-year-old son, Peter, would go "stark raving mad" if he were kicked out of the Sonoma facility.
"I never saw anyone like my son at any of these places," Defea said of community care facilities.
The task force, which has been meeting since July, is widely viewed as another step toward phasing out developmental centers, which went from 6,544 residents in 1992 to the current 1,510.
But California Health and Human Services Secretary Diana Dooley, who convened the task force, said no such decisions have been made. She noted that a new executive director recently was hired for Sonoma and that vacant staff positions are being filled.
"We're going to continue to provide services in Sonoma for the near future, for certain," Dooley said after Monday's day-long hearing had concluded.
Dooley said she is hoping to move the discussion beyond developmental centers versus community care. She instead spoke of what would be best for meeting client's needs along a "continuum of services."
Funding is a major issue, as the cost to treat patients in developmental centers has soared, from an average of $162,000 per resident in 2001 to more than $300,000 today. Advocates of the centers argue that's because the facilities treat the most difficult cases.
"There is never going to be enough resources to meet everyone's needs. It's just not available," Dooley said during the hearing.
The task force's 19 members include representative of regional centers, community service providers, organized labor and family members of developmental center residents.
Savaing Sok, a 21-year-old resident at Sonoma and the panel's lone developmental center patient, asked Dooley point-blank if the plan is to the close the facility, which is Sonoma Valley's largest employer with a workforce of about 1,200 and has an operating budget of about $146 million for this fiscal year. It has been a community fixture since 1891.
"It's certainly open now and it's going to be open for awhile. But looking at the long-term picture is what we're looking at," Dooley told Sok.
Kathleen Miller, who also is a member of the panel and whose 46-year-old son, Dan Smith, is a resident at Sonoma, said she's more convinced than ever that the task force will lead to the facility shutting down.
"Nobody is talking about how to shore up developmental centers," she said during a break Monday. "I haven't heard one comment about that."
The panel was created following media reports detailing graphic examples of abuse at the state's developmental centers and the failure of law enforcement to properly investigate the crimes. The Sonoma center has given up federal funding for 112 seriously disabled patients amid investigations into problems at the troubled facility.
In an effort to correct the problems and restore that funding, the center has entered into a federally approved performance improvement plan.
The state task force is scheduled to wrap up in November. Its recommendations could be included in Gov. Jerry Brown's January budget, according to Dooley.
You can reach Staff Writer Derek Moore at 521-5336 or derek.moore@pressdemocrat.com. On Twitter @deadlinederek.
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