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SDC family members address legislators

Legislators, and representatives of legislators, gathered at the Sonoma Developmental Center in Eldridge Saturday to address the Parents Hospital Association, a group comprised of family members of residents at SDC.

The parents and family members in turn praised SDC staff for caring for their loved ones and expressed anger at legislators for what some perceived as their either being complicit or negligent in the passage of trailer bill language that expressly prohibits any new admissions to SDC – and which many interpret as meaning the end of the developmental center. The family members, one after another, stood and spoke movingly of the need for the continued existence of the facility and lauded the specialized care it provides.

“This place must, must stay open,” one said, ending her comments in which she described how SDC staff had recognized symptoms of glaucoma in her brother – and that an outside doctor told her afterward that most board-and-care facilities would have treated the symptoms as the flu and her brother would most likely be blind now.

Many spoke of the unique services offered at Sonoma, such as the shoe workshop that custom-tailors footwear, and the fact that in the community at large, it would be difficult for many of the severely disabled residents to do things like get simple medical and dental care or go to church, because of their special circumstances and needs. But many also expressed concerns over even more fundamental issues of life and death.

“There will be no Sonoma Developmental Center if you don’t admit any more people. Somebody wants to close it,” said clergyman Tom Chesterman, a parent whose son, Tim, has lived at SDC for much of his life. Chesterman expressed his fear that placement for Tim elsewhere, due to his lack of hazard awareness and other issues, would amount to a death sentence – a sentiment echoed by many of the parents throughout the two-plus hour meeting.

Compounded with this, as it is with many of the parents, is the fact that Chesterman is 81, and he expressed fear over the fact that he may not be around much longer to make sure his son is in the right place. “Each time when his review comes up, I am asked by the staff, because they have to ask me, ‘Would you consider having Tim put into a community placement?’ I say, ‘Over my dead body.’ And that may be.”

Assemblymember Mariko Yamada, D-Davis; Cheryl Diehm, district representative for U.S. Rep. Mike Thompson, D-St. Helena; Elizabeth McCarthy, district representative for Sen. Noreen Evans, D-Santa Rosa; Maddy Hirshfield, district coordinator in Santa Rosa for Assemblymember Wes Chesbro, D-Arcata; Caitlin Doyle, a field rep for Assemblymember Marc Levine, D-San Rafael; 1st District Supervisor Susan Gorin; and Eric Gelber, asst. director of legislation and regulation for the State Department of Developmental Services, were among those on the panel listening to parents’ concerns. The event was moderated by PHA president Kathleen Miller,

Gelber apologized for DDS Director Terri Delgadillo, whom he said could not attend the legislative meeting due to a family emergency. “I’m here today, mostly to listen,” he told the crowd. The one time a question was directly addressed to him – about possible problems with the way residents from the closing Lanterman Developmental Center (LDC) are being placed – he said he couldn’t comment.

Yamada, who represents the 4th District, which includes Eldridge, also chairs the Assembly Select Committee on State Hospital and Developmental Center Safety and recently introduced a bill into the assembly that seeks to require special training for Office of Protective Services officers, the developmental centers’ in-house police force.

She was the only legislator at the state level to come herself to listen to the parents and family members.

The issue of closure, and the parents’ great fear of it, was brought up again and again. Not brought up were concerns about California Department of Public Health and Centers for Medicaid and Medicare Services sanctioning of SDC over “deficiencies,” or the potential loss of licensing. This seemed to surprise McCarthy, who read a statement prepared by Evans in advance that mentioned only “incidents of abuse and decertification,” and came off as somewhat tone-deaf to family members’ actual concerns.

One mother, at the end of her allotted time in which she pleaded that SDC stay open, said, her voice wavering, “I know the words I said are simple, but I hope you hear the fear and pain, because it’s real.”

Another family member, whose sister lives in the facility, asserted that if the residents are moved out into the community, most of them would be dead within five years.

“I can’t get data on how many are dying that’s accurate, or even close to accurate and valid. And I have been trying through the public records act,” said Miller, arguing that this information, about how residents fare when placed outside the centers, and their mortality rates, is vital.

Jerra Letrich-Hardy, whose sister has lived at the Lanterman Developmental Center for 40 years, traveled to Sonoma to speak to the legislators and the PHA about issues with the LDC closure, now into it’s third year.

She told of confusion, diminished staff, deteriorating care, unexpected deaths and unexplained injuries, and no true census of the condition of those who have been transitioned.

She said families, including hers, face “the pressure to accept limited placement options or risk the growing danger at LDC.”

She urged the legislators (or the reps present) to no longer let DDS “write its own report card.” She called for transparency and accountability, telling the panel, “Shift the focus and eliminate the practice of hearing panels that are seeded predominately with representatives from either the department or the regional center or service providers, professional advocacy organizations, union reps, etc. Service recipients, represented by family members, should hold your attention, your ear and the majority of the seats. They are the experts.”

Later Yamada, in the midst of a long closing statement, acknowledged the problem, lamenting that, “You don’t have lobbyists with $1,500-suits on your behalf.”