By Kathleen Miller
Sonoma Developmental Center families and friends are worried.
We listened to the task force on the future of developmental center hearings, we hear the ongoing diatribe against developmental centers, we hear the call for closure, we hear the need to save the state money. Also, we know our own histories.
We know that there are stories of former SDC residents who have been successful in alternative placements. We celebrate when they are successful. We love nothing better than to hear about former SDC residents flourishing in alternative placements after being stabilized by SDC services.
On the other hand, we also hear stories from those who are not doing well. Many of us have our own such stories, stories of our family members who were ejected from their community placements because they were too ill or too difficult to handle.
Pat Walters is a microbiologist whose work is critical to the lives of many who rely on her accuracy. She has read the regulations that would govern the homes that are proposed for individuals who are medically fragile, and she is clearly aware of what those homes have to offer. She is not convinced that her daughter would even survive the transition if she were forced to move into such a home from SDC.
Her daughter has a severe seizure disorder and a number of other complex medical conditions – she is not easy to care for. Even so, she loves to be in the thick of things and lives to be surrounded by people and activity. She has done well at Sonoma Developmental Center.
Pat’s fears are not just vague doubts, they are based on her knowledge of the risks and her daughter’s unique needs. She knows a move of any kind presents risks to her daughter. Moving to a home staffed by people unfamiliar with her daughter, and with medical staff only available once every 60 days, is not enough care to provide the life sustaining support her daughter needs.
Private vendors are eager to get SDC’s medically-fragile individuals into their group homes. They say that alternative private homes can care for the SDC medically fragile residents. But when things go wrong in these homes, the residents can end up either dead or in skilled nursing homes, facilities that are designed to care for the sick and elderly.
Skilled nursing homes were created for those who are old, ill and dying, and do not have the day programs necessary to provide stimulation and activities needed by SDC residents. Residents of SDC are used to a daily schedule of programming for their development and health maintenance. Furthermore, skilled nursing facilities may not represent any cost savings to the state. And, ironically, they do not even fit into the philosophy that all developmentally disabled individuals belong in community housing, living among nondisabled people. Please note that close to 1,000 regional center clients live in skilled nursing facilities.
The situation for behaviorally-challenging residents of SDC bodes even worse. During the recent task force deliberations, I was contacted by the sister of a young man I will call “John.” John is a client of a northern California regional center who is developmentally delayed and also has mental illness. He had already been ejected from a number of community homes when his sister contacted me. John reminds me of my own son, and of many other current residents of SDC who are among the behaviorally-challenging residents who have a diagnosis of developmental disability and mental illness.
The regional center was unable to place John in SDC because of the current moratorium on placement into a developmental center. This moratorium prevents anyone from being placed in Sonoma. No doubt if he had been allowed access to SDC, he could have spent time there getting stabilized, staying until he was ready to return to an alternative placement with a chance at success. Instead, he was sent to a 15-bed, delayed-egress facility in Yuba City.
Delayed-egress facilities are not considered locked. They have doors that lock for a time when tried, and then unlock. Residents in such facilities who are cognitively unable, or too mentally ill, to deal with such a delay experience it as a locked facility. SDC is considered most restrictive because it has locked doors for a few residents part of the day. Unfortunately, residents of the delayed-egress facility are there 24-hours a day, 7-days a week.
Recently, John got into an altercation with another resident and was sent downstairs into a locked psychiatric facility. In that facility, he not only was locked up, but he was denied access to people and resources in the outside world, including access to his sister. He also mixed with those in the general community of the mentally ill and he was subjected to a mix of medical restraints. Subsequent to that, he was sent to yet another acute psychiatric facility in southern California, even further away from his home and support system.
I wish I could tell you his situation is unique, but in 2012, 850 regional center clients went to general acute psychiatric facilities, and 221 went to jail. I also wish I could explain that such measures at least save taxpayer dollars. No such luck! The facility in southern California costs half a million dollars a year to house and care for John, and that does not include the cost of regional center staff desperately trying to find him any location that will take him, the cost of transport and numerous other costs.
The real cost however, is the human cost. John has been repeatedly ripped from his home, his family and all that is familiar, right when he needs them the most. He has been subjected to many different medical restraints and, no-doubt, physical restraints. Now, when he acts out as a result of his mental illness, or as a result of his terror at losing all that is familiar and safe, the response has been more restraints.
Developmental center families are being told not to worry. We are being told that alternative placements can handle our loved ones without problems, that it happens every day. But Sonoma families are still very worried.
So, what can we do? We have formed an alliance with the local Sonoma community, a community that has welcomed the SDC residents for decades. We support their goals of creating needed open space and watershed preservation on SDC land, and they support our goals of creating services for the most vulnerable of California’s citizens. With them, we are hoping to create something new and special for the vulnerable populations that live at SDC.
This vision includes support from both the surrounding community and those of us who rely on SDC services. We are hoping to take the recommendations of the task force on the future of the developmental centers and implement them in ways that will not only protect the current residents of SDC but those who would have been future residents.
Sonoma families are worried. But we have an important resource that other families with family members living in closing developmental centers have not had. We have the Sonoma community.
Kathleen Miller is president of the Parent Hospital Association at the Sonoma Developmental Center.