Kathleen's response is provided in full below. You can find a list of Gabrielson's articles for California Watch by clicking here.
In the more than the 12 years my son Danny has been a resident of Sonoma Developmental Center, I have witnessed that he and the other residents have received professional and specialized care. Despite that quality care Danny and other residents enjoy there is a recent news story criticizing the police response at California’s Developmental Centers. Although the article pretends to analyze only police response, it is, in fact, a thinly veiled attack on the Developmental Centers.
This story, reporting on events from 5 to 10 years ago or more, comes in an atmosphere where we at the Parent Hospital Association feel the California Department of Developmental Services is moving to close the state’s Developmental Centers. This atmosphere is created by the refusal of DDS acknowledge publicly that closure is indeed the state’s goal and policy, when their actions on the ground can lead any reasonable person to see this is the direction they are heading.
I, and other family members, met with Ryan Gabrielson, the reporter responsible for the story, and shared our views and knowledge with him. I find it significant that Mr. Gabrielson chose not to include our sentiments, our praise for the care our loved ones receive, or any other comments we cared to make.
I personally worked at the Sonoma Developmental Center for 7-1/2 years as a LCSW. During my years there every injury or event with the potential to harm a resident was reported. Even the smallest scratch or bruise meant an incident report was completed and went up the line. Some incidents were reported as abuse that would likely not be included as abuse at the other developmental centers or the community. Our licensing agency has strict standards for reporting; standards that are not uniform throughout the system. Further, I have inside information that the information cited in the news article is not even accurate.Comparing the number of incident reports, injuries, or abuse thus are useless because they mean different things at different centers. Rules for reporting in DSS licensed homes in the community are different still and DSS licensing does not get access to the information in most cases. Trying to make comparisons is not like comparing apples to oranges but apples to a cow.
Please understand, as with all of those who are dependent on others for life-giving care, mistakes are made. Some of those mistakes have had tragic results. However, at Sonoma Developmental Center any and all mistakes were and are reported and serious attempts within the facility are made to enact improvements wherever necessary. I do not know about the actions of our police but I know what happened on the units, and discussions were held and procedures were adjusted.
It is also difficult to understand the sole concentration of negative scrutiny within Mr Gabrielson’s story on the Developmental Centers. Recently there was a fire in a San Andreas Regional Center care home. Five of the six residents burned to death and the sixth went to ICU. The two care providers, who saved themselves, did not make attempts to save residents or call 911. I heard nothing of the fire on the news and had to go on line to find out the basic facts. Where was the outrage?
A related concern is the difficulty getting information from DDS. Sonoma Developmental Center may be an open book within the system but trying to get general information from DDS, information that should be available to the public, is a very different matter. In order to get information a Public Record Request is required. In the past those moving from the centers into alternative homes have not done well. Some have had had declining health, some have gone to jail, and many have died. I have made several such Public Record Requests about the deaths of the residents moved out of Agnews Developmental Center when it was closed by DDS, and the fate of Sonoma Developmental Center residents who have been placed in community settings.
The information is not forthcoming.
In some cases I am told DDS does not have the information, in others they stall. How can families, friends, and conservators of DDs consumers become part of solutions for our loved ones when we can’t gain access to basic information? How can the public know about problems if information is constantly withheld? In order to have meaningful dialogue stakeholders need to be equally informed.
This latest news report underscores the importance of caring family, friends, and conservators in overseeing the DDS system and the well being of those they love. Sonoma Developmental Center has traditionally empowered me and encouraged involvement in my son’s life. Under past leadership I was informed when things did not go well, I was included in decision making, and my input was both sought and valued. The result is that Danny, and others like him, enjoy meaningful and rich lives not available to them outside the Developmental Centers.
Families hope that Sonoma Developmental Center will always be an option for those who need it. Whatever happens in the future, DDS needs more transparency to those of us who are the public stakeholders. We also need more access to open communication with those who are making decisions that control the lives of our family members and loved ones.
Is it so much to ask the State of California for transparency, communication, and the ability for us to make informed choices about the care of those we love?
Sincerely,
Kathleen Miller-PHA President
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