Does closing developmental centers mean the end of choice in the Department of Developmental Service
By Kathleen Miller, PHA President
Developmental Centers are closing and for many of the residents and their families it is a bitter pill to swallow. What makes it even more difficult is hearing all the comments from the same voices who have opposed developmental centers for years. They are forever saying how residents will live in less restrictive environments, or how they can be part of the greater community outside of developmental centers. These remarks along with other comments make no sense to most of us familiar with life at developmental centers. Many of us have also had our loved ones live in community residences, and that only makes us more frustrated with the one-size-must-fit-all vision espoused by these voices.
The truth is that board and care facilities, where almost all developmental center residents will be placed, are extremely restrictive for individuals who live in them. Staff decide when the residents eat and what they eat. They decide what they get to watch on TV and what they do with their time. They may even decide what they wear and when they bathe. Most residents cannot set a foot outside the front door unless staff agree to accompany them. Some of those same concerns can be said about the developmental centers, but anyone walking the grounds of Sonoma Developmental Center (SDC) will notice how common it is to see the residents out and about. They often walk independently or they walk in groups with staff. They take rides in the tram. Medical clients have afternoon groups outside. “Least restrictive” has become a very empty phrase to families who have experience with board and care facilities versus life at the centers.
I am reminded of a young man on my son’s residence who was placed in a board and care facility. When he was at SDC he used to spend time every day walking the grounds. He sought out time most days to be on his own with nature on the beautiful SDC campus. When I visited him in his new setting, staff bragged about how they had broken him of the dangerous habit of simply walking off. He no longer attempted to leave and take a walk on his own. No doubt this was needed because now it was no longer safe for him to walk on his own as he had at SDC. But it is difficult to make the case that he is in a less restrictive setting or that his choices are being honored.
The fact is many, if not most, of the remaining residents of developmental centers prefer life in the centers. They see the centers as home. Knowing the preferences of those who are nonverbal is challenging. How can one assert that they would have a preference for the developmental center or anywhere else? Actually, nonverbal individuals have many ways of making their preferences known if we only take the time to notice. Some are social while others are not. Some love to be by the nurse’s station where the action is. Others prefer it quiet. Almost all seem to enjoy being outdoors on a pleasant afternoon. Some will adapt to life outside the center. Some may well express their reluctance to move to a new facility by expressing increased anxiety or developing health issues over a move they do not choose. However, such reactions are easy to ignore.
There can be no denying, however, the feelings of many of the more verbal residents. One mother quoted her son in a recent article where she said with his limited verbal ability her son is adamant. When asked where he would like to live, he said, “stay here” – at the Sonoma Developmental Center.
Yet another young man was about to be placed in a board and care facility outside of SDC. Staff took him on a couple of visits and fed him lunch in the facility. He seemed to enjoy these visits. They then took him to his new facility to stay. After lunch he became agitated. He kept asking to return to SDC. When he finally understood he would not be returning to SDC, he exploded. He tore apart his surroundings and began attacking staff and residents. Many SDC residents make a very clear choice to remain at SDC.
One of the most difficult things for the families of such residents to hear is providers, and even high functioning regional center clients, claiming to support the concept of choice in one breath and maintaining that developmental centers need to close in the next. Some try to deny that residents really make the choice to live in developmental centers. They maintain that SDC residents have not yet experienced the wonder of community settings. However, many have, and have had very bad experiences. Some say staff and family have hoodwinked the SDC residents into saying they prefer SDC. They do this while ignoring the fact that many of the community based clients crying for closure of developmental centers, and denouncing them as evil, have never set foot inside a center or are those who should have never been there in the first place. They simply refuse to accept that others may want something other than what they might want, that they want to remain at SDC.
This issue actually goes much deeper than closing California’s remaining developmental centers. It is an issue of choice being taken from society’s most powerless. Children are another powerless population not allowed the choice. When the Children’s Village in Santa Rosa closed, they were not given the option of living in children’s centers over foster care homes. Some may well choose foster care. Clearly, however, not all foster care homes are quality homes. Some are not even safe. Maybe instead of forcing all children into one model, the issue of choices needs to be more fully explored for them. The same is true of the individuals with developmental disabilities. It always seems to be individuals with no power who are forced into settings “for their own good.”
Seniors, college students, and in fact most who have the power to advocate on their own behalf do not all choose the same options. Very few choose board and care facilities.
Choice, real choice, may not always fall into preferred boxes. Folks don’t always choose what we want them to choose. My son walks to the SDC store every day and buys himself a candy bar. I would rather he buy himself an apple. He would rather have a candy bar. That is his choice. Many SDC residents would rather remain SDC residents. Regional centers, community providers, and paid advocates want them to choose board and care facilities. They prefer SDC.
They will no longer have that choice. From here forward they have less choice in their lives, and those of us who love them mourn that loss with them. They will be forced into board and care facilities where their choices will be limited or nonexistent. They can no longer walk on their own, go to the store and buy candy bars on their own, go to church services or choose not to go on their own, or make any number of day to day choices they have been making daily at SDC. Choice has taken a hit. Let’s not pretend otherwise.
Kathleen Miller is president of the Parent Hospital Association at SDC. Her adult son has lived there for 17 years.
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