Parents, guardians not happy with rush to close SDC
The rush to provide the California Legislature with a closure plan for Sonoma Developmental Center (SDC) by Oct. 1 has parents and guardians of the 396 severely challenged residents seeking some sense of order in the process, and has left the state officials responsible for the transition scrambling to meet a number of hazy guidelines set out in the Governor’s surprise decision in May to close the state’s remaining congregate care facilities of the developmentally disabled in the next few years, starting with Sonoma.
The decision to close immediately seems to have been prompted by changes in federal guidelines that threaten to cut off funding for developmental centers in the near future. Federal Medicaid policy promulgated in 2013 is clearly aimed at achieving that end, allowing no funds for people being cared for in institutional settings like SDC.
One of the state closure guidelines is a requirement to ask client guardians about their concerns and answer questions about moving their charges from the SDC to smaller, community-based home care units scattered throughout Northern California. These homes are operated by a number of vendors under the umbrella administration of 21 nonprofit Regional Centers. To that end, the Department of Developmental Services (DDS) gathered representatives from five of the six Regional Centers responsible for SDC residents, along with SDC Executive Director Karen Faria, John Doyle, chief deputy director of the DDS, and other DDS staff members, to answer questions. Faria has announced that she will be retiring on Oct. 1.
Most of the responses to audience questions boiled down to, “we will work hard to take care of that.” Many people expressed their concerns and fears that while the government may be listening – as required – there is little to assure them that those concerns will be resolved by any meaningful actions on the state’s part.
Noticeably absent from the meeting were most of the board members of the SDC Parent Hospital Association, some of whom felt this meeting would not be productive.
While taking care not to characterize their lack of participation as a boycott, PHA president Kathleen Miller feels the state is doing what it has to – listen to the parents and make plans – but is basically driven to meet the Oct. 1 plan deadline whether adequate planning and funding are in place.
“This meeting did not have any official purpose we felt was going to be realized,” Miller said. “We felt the DDS wanted to reassure us that everything was going to be fine. I’m not feeling that much reassured and wasn’t in the mood to listen to that. We are having a PHA meeting on July 11. Sen. Mark McGuire is having meetings on his own. Why attend one I didn’t feel was serving any particular purpose?”
Amy Wall, a DDS official and member of the Residential Transition Administration Group, said that a transition plan will be “tailored for every person,” and that milestones would be developed and checked. She also noted that there would be many meetings to discuss the transfers with family members.
Brian Caroll, whose sister has been an SDC resident since 1958, said he almost boycotted the meeting since “they have no interest in collaboration,” and urged the DDS to bring in a third party facilitator. “We are adversarial,” Caroll noted, himself a former city attorney for Santa Rosa. Caroll said that difficulties with the 2014 closure of Lanterman Developmental Center that have not yet been addressed provide little confidence for the future of the SDC closure.
Reassurances that current SDC staff will find work with their existing patients and that they will train staff at new, smaller care facilities were met with skepticism over whether minimum wage employees typically hired by Regional Center care providers could ever provide the same level of care for the very severely afflicted, or that they would even remain in service long enough to make training worthwhile. Others were concerned that, aside from the initial budget allowances to build and staff new homes, money for long-term staffing and care could evaporate with changing politics or state income.
A question was raised about the adequacy of smaller homes to cope with extreme behavior issues exhibited by some residents.
Another complaint aired was that parents would lose the advocacy strength of the Parent Hospital Association after their charges are moved out to homes over a wide area.
Doyle said that “we will work hard to get the resources we need” to provide adequate continuing care.
A note on the PHA’s blog said, “A big concern remains that all DDS is required to do is provide ‘descriptions’ of the issues listed above. It does require that they confer with Sonoma County and consider recommendations, but they are not required in any way to respond to or adopt recommendations from the community. And there is no mention of protection of the land and natural resources of the property.” (blog.parenthospitalassociation.org/)
Wall said that a required formal public hearing has been scheduled for July 18 from 10 a.m. to 5 p.m., but no location has been picked. She said there will be many public announcements once the site is picked.