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The Advocate: Georgianna Lamb has documented a number of abuses at Embee Manor on behalf of her client, Nancy Golin. Thus far, Lamb has received little sympathy from state officials responsible for oversight of disabled adults. Forgotten Care State officials plan to funnel disabled adults into community-care facilities, where monitoring their progress will be difficult By Najeeb Hasan LAST AUGUST, Georgianna Lamb sat down to write what would become a four-page letter to San Jose's Community Care Licensing office. In her letter, Lamb, an east San Jose resident, detailed 28 specific points of concern she had about the care of Nancy Golin, an autistic adult who resides in one of the South Bay's community-care facilities for the developmentally disabled. Lamb has known Golin, whose story was reported in Metro last year ("Saving Nancy," April 28), for 13 years and was granted special-advocate status for Golin after she promised not to petition for conservatorship of Golin. Using her special status, Lamb negotiated with the San Andreas Regional Center, a quasi-political nonprofit responsible for the placement of disabled persons, to remove Golin from Embee Manor, where Golin has lived for two years. By January of last year, Lamb had succeeded in getting Golin transferred from Embee Manor to another facility in the area. But her concerns about Embee Manor, which continues to operate as a licensed facility for those who suffer from a range of mental illnesses, including cerebral palsy, retardation, epilepsy and autism, were never addressed. Lamb's 28 points included the routine—the lack of appropriate levels of staffing, the lack of heating, the lack of nutritious food—but also included several extraordinary complaints about the Golin's care. Among the complaints were the following: * Nancy was locked in her room during much of her stay at Embee. * A report of Nancy urinating on the floor. Golin urinates on the floor if she has a seizure but it appears the main caregiver was unaware of this medical fact or that Nancy had many seizures during the night. Lamb assumes Golin had seizures while locked in her room and urinated on the floor. * In the spring of 2003, one of Nancy's caregivers was away for training. Other Embee Manor workers called her to say Golin had experienced over 12 seizures. But the main caregiver would not let them take Nancy to the hospital. "[She] said, 'They would just check her levels and send her home.' This is very dangerous as Nancy becomes cyanotic at times during seizures and needs oxygen. I can tell you all the parties who were present during this incident. They continued to call the caregiver ... and one person was crying, saying it was really terrible and she feared something would happen to Nancy." Golin was finally taken to the hospital. But Lamb has evidence where facility workers failed to document the actual number of seizures Golin had. Metro called Embee Manor to ask about patient care but a receptionist hung up on a reporter. Lamb's complaints, despite their number, have done little to change things at Embee Manor. The Community Care Licensing Board called Lamb to say her complaints proved inconclusive. "I started telling them what they could do to verify my complaints," Lamb says. "But this woman, she actually told me she was closing the case." The Overseer Oversight at community-care facilities has been riddled with controversy since 1997, when the San Francisco Chronicle published a series of stories that shed light on serious problems in California's group homes like Embee Manor. Now, with the impending closure of Agnews Developmental Center, on Zanker Road in San Jose, community care is again in the spotlight because these types of facilities will house Agnews residents. Officials of the California Department of Developmental Services announced last week that Agnews will remain open until at least June 2007. Agnews is one of five remaining developmental centers in California, centers that cater to disabled persons with the most pressing needs. Agnews currently houses 346 such residents. The state's plan for closing Agnews involves transferring about 50 residents to Sonoma Developmental Center, nearly 100 miles away. The remaining residents will either be placed in existing nonprofit community homes or new community-care homes that offer higher levels of care. Most of the 320 community homes contracted with San Andreas are run on a for-profit basis, and the state's plan, by funneling residents into nonprofit homes, implies that the nonprofit facilities might be more reliable. But as Lamb discovered when she complained about Embee Manor, group-home providers are especially difficult to regulate. In the state's Agnews plan, officials say new licensing standards will be established by legislation. "We are very concerned," acknowledges Steve Johnson, a member of Keep Our Families Together, an Agnews advocacy group. "That's why our group was born two years ago. It was to address what everyone is aware of, that the current community care system has serious flaws." In 2003, Families Together published its own study of South Bay community-care facilities. The group randomly selected 100, or about 30 percent of San Andreas' group homes in Santa Clara County, and examined five years' worth of Community Care Licensing's files about the selected homes. (The licensing office keeps both a public file and a private file about each home; the public file includes only substantiated complaint investigations, thus, offering only a tiny sliver of the complaints filed with the licensing office.) In its study, Families Together recorded, among other findings, 71 substantiated cases of abuse, 229 substantiated hazardous or dirty conditions and 146 substantiated medication errors. Seventy percent of the 100 homes studied were found to have problems. Keep Families Together found examples of community-care staff fired for being drunk on duty, a resident who committed suicide by hanging though the staff was unaware of any depression, two residents who died after they stopped breathing, a staff member wielding a knife at another staff member in full view of the residents, a resident who arrived at a day program with a maggot-infested lunch, staff slapping residents in the face for discipline, a resident forced to walk 2.6 miles from school every day and a resident overdosing on medication. The problem, Johnson says, is that Community Care Licensing has very little enforcement power. "Unfortunately, the problem with the system is that the regional centers place individuals into these homes and reimburse the homes for services," he says. "Community Care then tries to enforce the standards. Unfortunately community care has no clout to take clients away from problem homes or cut funding. The only recourse they have is to go to court and file a lawsuit against the home." Johnson says the Licensing Board has worked closer with San Andreas in the past 18 months. However, the regional centers pushed back and said, "We don't have any other place to transfer these individuals to, which is unfortunate. We know from examining the files that there are people at risk. There are staff that float around the system, and when they are fired from one home, they are hired at another." Lamb, meanwhile, still waits for answers to her complaints. "The big problem is the undocumented workers," Lamb explains. "Licensing told me that that was not their concern or jurisdiction. But they don't want to speak out because they are undocumented workers. The person who they rat on would report them." Lamb pauses. "I'm heartbroken at one of the residents at Embee. He's more advanced than Nancy. He has Down's syndrome, and they have no activities for him. He just sits there and watches TV. It's sad. It's very sad." Send a letter to the editor about this story to letters@metronews.com. [ Silicon Valley | Metroactive Home | Archives ]