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.