PHA president: a missed opportunity to help the Developmentally Disabled.
Last Thursday Sonoma Developmental Center families received word that Sonoma Developmental Center would be fast tracked for closure. It remains to be seen if this announcement and the subsequent actions by those in Sacramento will shut down a movement led by Supervisor Susan Gorin to shore up the shredded system of community care and locate some safety net services on the Sonoma Developmental Center site. I am awed by the commitment she and others in the local Sonoma community have shown as they continue to stand by the residents of SDC. Meanwhile Sacramento may lose a golden opportunity to work with a committed and caring community to improve the care for all of California’s citizens with developmental disabilities.
Many lies and tall tales have been told to justify this recent decision. In a recent article in the Sun the claim is made by Nancy Gardener that “community alternatives provide safeguards against abuse” and that these safeguards are somehow not in place in the developmental centers. The opposite is true.
Abuse is uncovered when staff observe and report it. The more eyes on those with developmental disabilities the greater the odds of abuse being discovered and reported. SDC has multiple professional staff who have a long history of responding to and reporting any incident with even the potential to harm SDC residents. Community settings often have only one or two staff working at a time.
SDC has massive ongoing federal oversight, oversight that is totally absent in community settings. Some board and care settings are and staffed by families who are even less likely to report on family members. In supported living settings there is usually one low paid staff working with individuals with developmental disabilities at a time and no licensing oversight at all! Most community staff are compassionate and caring but sadly exceptions occur throughout the system. For those unable to speak out on their own behalf this lack of oversight has real potential to lead to situations where abuse is invisible. Undiscovered abuse can continue unabated. Many of SDC residents have suffered serious abuse in community settings prior to coming to SDC.
In this same article Gardener also claims that living in community settings allows for greater independence than living in SDC. This is a claim that is echoed by many in the community care system. It has been true for some in the past, but it is not really true for those who live in SDC today .My own son is an example. He has lived in a number of different community settings including board and care settings so popular with today’s regional centers. Before he was ejected from these settings due to his mental illness he had very limited freedom in these community settings. He was not free to leave the house on his own and staff had little interest in taking him for a walk. In this isolated setting he had no real peers and the care staff made it clear that they viewed him as a “problem.” I was prohibited from visiting him when I wanted because he would constantly obsess and cause a problem for staff by repeatedly asking when I was coming. He never wanted to return. Contrast that to SDC where he and many of the residents are free to roam the lovely grounds and walk on their own to the store or work. He still looks forward to my visits but he also looks forward to returning home to SDC.
What fits one individual does not fit another. It is hard to constantly be battered with the one size fits all rhetoric. SDC families have always supported those who chose to live in community settings but we fail to understand why SDC residents should not be free to choose as well.
Housing is only one of many issues facing those who are forced to move out of developmental centers. In the developmental centers the staff are well trained and well compensated. Not true in community settings where often staff only receive minimum wage salaries. Also those moving from developmental centers have multiple medical issues and many have mental illness. They need a full range of support services. Unfortunately the medical, dental, equipment maintenance, and health supports are not up to the task of providing what they need or in some cases are completely lacking. During the 40 plus years they have been closing developmental centers the Department of Developmental Service (DDS) and regional centers promise that services will be in place for the movers, but in fact they have never bothered to develop them. Keeping the focus on closing the centers has removed the focus for the gaps in community settings that have needed shoring up for decades.
Who should we blame for the shredded system of community care? The truth is there is more than enough blame to go around. A good place to start is with the legislature. Individuals with developmental disabilities are an invisible minority who seldom vote. Funding for them continues to be a low priority. Meanwhile Assemblywoman Grove who loves to roll out her mantra that developmental centers are oppressive and abusive utters not a peep about abuse in community settings. This was true even when a video of a young man in her own district surfaced where he was being killed in an illegal takedown. Senator Stone had never even set foot inside a developmental center before he decided they should be closed. The fact is that he is out of his depth, but that does not stop him from preening before an audience who want to see the developmental centers closed in the failed and misinformed hope that they will get more funding if that happens.
Community providers are also to blame for adding to the problems instead of working with developmental centers to create better services for all. Providers constantly demand the developmental centers need to close and then they should receive all the money spent to operate them. Their reasoning suffers from a lack of understanding of the federal funding mechanisms.They actually weaken their own case for increased funding by arguing that they can provide for the most challenging developmental residents; easy –peasy. At the same time they state the community care system is falling apart because they can’t pay staff a decent wage or provide for those in their charge because of inadequate funding. This is a confusing set of assertions that results in them not getting the funding they need. The truth is developmental centers have been closing for decades and it has never helped with an increase in funding for community providers. What it has done is to make it clear to developmental center families that providers are more than willing to throw developmental center residents under the bus in the vain hope they will get a raise in pay.
Finally some blame lies at the feet of the Brown administration. He has chosen to continue to under fund services to the disabled. He would do well to remember that Ronald Reagan is remembered in California for forcing the mentally ill onto the streets. His legacy here has been permanently tarnished. a Brown is at risk of tarnishing his by choosing trains over people.
Kathleen Miller, President, Parent Hospital Association
