The True Believers

by Kathleen Miller, PHA President

Last Thursday I attended a senate budget hearing that I was told was to follow up on the improvements that have taken place over the last months at Sonoma Developmental Center. I was happy that I had good news to report and went armed with the Eldridge paper that had listed all the new hires. I was even able to give specific information about changes in the day programs on ICF [intermediate care facility]. I need not have bothered. One member of the senate budget committee had clearly made up his mind and played to the crowd of protesters demanding the closure for the centers. He joined with the mob calling for the closure of Sonoma and failed to really hear concerned voices who raised issues around that. (Please take a moment to view the stories presented in the news about the rally and hearing.)

ABC 7 News – KGO Bay Area
http://abclocal.go.com/kgo/story?section=news/local/north_bay&id=9062195

CBS 13 News – KOVR Sacramento
Members of disable community rally at capitol to shut down abusive care centers

Capital Public Radio – Sacramento
Disability advocates call for closure of state-run residential centers 

California Watch
Lawmakers mull next steps for developmental centers

California Watch
Independent oversight proposed for developmental centers

The many individuals with signs calling for closure and demanding that the residents of the developmental centers be “freed” both saddened and interested me. When I attempted to ask them why they did not support the choices of those who lived in Sonoma they became irate. Some resorted to calling me names. It was clear to me that they did not have a real understanding of Sonoma, or the residents, or the families who love them. When I spoke to one woman she asked me if my son was verbal. When I told her he was she asked if I ever visited. When I told her I was at Sonoma on a weekly basis she seemed skeptical. It would not have mattered no matter what I said. She was s in it to fight the good fight. Her prize was not 72 virgins but the closure of all the evil centers. Those of us who support the centers are evil as well. Led by ARC, paid providers, and paid advocates this was a group of true believers.

Those of us with loved ones living in Sonoma are concerned about the fate of our loved ones in the event of closure. Most of us worry about the gaps in community services for folks like ours. We worry about limited oversight and who will care, much less investigate, when our family members are abused in community homes. We worry about whether our sons and daughters with behaviors might end up in acute psych centers or jail. We worry that they will never again be able to take a walk on their own or have the many freedoms they enjoy with life in Sonoma if it closes. We even worry that they will not survive closure or a move to an outside placement.

Of course the providers who have come with their minions will testify that they are able to provide the same care for a fraction of the cost. That is just what the legislators want to hear. Who can blame them? With the reduction in the number of residents in the centers the cost per resident is high. True believers do not confuse the issue by noting that community care costs do not include much of the real costs associated with these difficult to serve folks in other settings. No one really has that information anyway, just as no one seems to know how much the death rate increases for developmental center resident increases during closure or what happens to behavior clients already living outside the centers. A little collateral damage is necessary when making these sweeping changes. True believers get this and accept it.

Also ignored is the fact that any resident of a developmental center has the right to ask to live else where, outside of the developmental center. This choice is law and based on a legal process called a writ. All any resident of a developmental center has to do is say they want to move and their wish must be heard and granted. Some true believers complain that it can takes months for regional centers to find anyone willing or able to take on difficult center residents. Of course they never mention the fact that it is only in developmental centers that clients have this right. Once they move into a community home they can be miserable and they have no legal process like the writ to ask for a change of placement. Choice may no longer be an option. So basically it is only fancy words that choice is important to true believers. The one setting where choice is mandatory in the law is the same setting they know must be eliminated as an option-even for those who are able to clearly state that is where they want to be.

And really, has not the press has been writing for months about the abuses that have occurred at Sonoma? Nine years ago one resident did become pregnant although it unclear who or when. Some behavior clients were subjected to tasering. The fact the hundreds of individuals who are abused in community homes does not get much press is not the issue. The press wants the big story, the large demonstration, the red meat. I do have sympathy. It is very difficult to really know what happens in the board and care with two staff or the supported living that may have only one. It is impossible to get access to information. Regional Centers are not subject to the public records act and DDS [Department of Developmental Services] simply does not appear to have it. (I know - I have tried.) Even if a story of abuse in the community does get so bad that it hits the paper it is a blip, and then it is gone. It certainly does not have the staying power of Sonoma.

I must give credit to last week’s demonstrators. They do tend to make visits to Sacramento a regular outing. I have trouble getting my parents to accept we are in danger of losing Sonoma. However they do not count on the fever of the true believers. The believers have found a cause and do not want to be confronted by the facts, the potential for harm their actions may have, or by the feelings of those with the most to lose. They do not want to hear about options or the right to choose. They do not want to listen to any truth but their own. Such is the nature of the true believer.

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