By Nancy Gardner
I first toured Sonoma Developmental Center (SDC) over 35 years ago, just out of graduate school and eager to change the world for people with developmental disabilities. Having worked in community services for children with disabilities since a teenager, I was shocked by the conditions I observed at SDC. The passion I already felt for this population and the desire to advocate for them was strengthened, and has continued to be a central focus of my life and career.
If you or I needed assistance with most every-day living activities, where would you rather live: in your own home with support, a small group home, or in a large state run institution? I’d prefer the greatest amount of normalcy and independence that my living environment could allow. The same is true for people with developmental disabilities.
I support the thoughtful transformation, then closure of Sonoma Developmental Center (SDC), the continued freeze on admissions, and the recommendation of the Legislative Analyst’s Office (LAO) to develop a plan for phase out in 10 years or less. I also support the local coalition’s recommendations to preserve the expertise, resources, land and open space that exist at SDC. Susan Gorin’s leadership has been commendable on the issue.
Despite Herculean efforts by recent and current SDC staff, mostly well trained and compassionate, they are fighting a battle that in my view cannot be won. The worst horrors of what occurred at SDC over the years are in the past, but abuse is still evident. Oversight agencies have repeatedly documented serious inadequacies. Any time vulnerable people, whether children, elderly or disabled, are housed in large institutions with one employer and isolated from the community, there will be abuse. This helps us understand why SDC continues to be unable to meet the low bar of federal certification.
Almost 50 years ago, the California Lanterman Developmental Services Act was nationally recognized and emulated by other states. It was formulated by parents who were outraged by the treatment people were receiving in state institutions. That law established the community system with 21 Regional Centers, locally based non-profit organizations with Board of Directors who are by law, comprised of over 50 percent parents, family members and self- advocates. Today that California system provides robust, individualized supports and services to over 280,000 people with developmental disabilities, more than 279,000 of whom are well served in the community. Federal court decisions and legislation, including the Olmstead Decision, have subsequently dictated that people with developmental disabilities have the same civil rights as the rest of us, and that includes enjoying the least restrictive living alternative possible.
To do otherwise represents discrimination. I maintain that community alternatives provide safeguards against abuse because there are many potential reporters (i.e.: employment programs and transportation providers, neighbors, case managers, involved families, etc.). In addition, both Regional Centers and Community Care Licensing are mandated to conduct frequent quality assurance visits, announced and unannounced, in all licensed facilities. Studies have shown that the quality of life for most people with disabilities is substantially improved when they live in our world.
The argument that those living at SDC are unable to be served in the community because of the severity of their needs is fallacious. For every person residing in a state run facility today, there is a twin benefiting from life in the community. Magical treatment does not occur within the locked doors and walls of an institution. As the closure of four other State DCs has proven, when resources and expertise are transferred or further developed, people have been safely and successfully moved into smaller more home like settings, regardless of their level of need. I encourage those in doubt to arrange tours of these homes where the highest standard of care is maintained, even for the most medically fragile and behaviorally challenged amongst us.
The Sun wrote that the LAO’s fiscal analysis citing potential savings by closing SDC were highly debatable. Please consider the cost of housing one person at SDC is between $500,000 and $600,000 annually. A person served by a regional center in a licensed residential setting, ranges from $60,000 to $200,000 annually, as dictated by individual need and level of care. These are taxpayer dollars, and not to be dismissed so lightly. You and I are paying for an enormous bureaucratic system and the overhead of segregation and separate services in aging buildings at SDC. Rather than allowing people to be part of our greater society, SDC has its own fire department, police protection, post office, grounds maintenance, plumbers and electricians, hair stylists, administration, etc. Developmental Centers have proven to be an expensive and unsustainable model in California and other states, and are not in the best interest of our most vulnerable citizens.
Fortunately, the vision emerging for the future of SDC includes many areas of consensus. Priorities include land and wild life protection, preservation and expansion of medical and adaptive technology expertise, as well as enhanced public access to services and alternative uses for the property. The upcoming workshops provide an opportunity for healthy discourse on this complex issue. It is critical that those of us who have dedicated our careers and hearts to people with developmental disabilities, and those who love Sonoma Valley, be involved and influential in exploration of the SDC of tomorrow.
Nancy Gardner is the former executive director of North Bay Regional Center
How about the mortality rate which was 80% higher for those who were taken out of SDC and the other developmental centers following the Coffelt Lawsuit? Is this okay?
Also, as stated in her report Dr. Place of the California State University in Sacramento: This data strongly suggests that these consumers have left a congregate setting but have lost valuable and necessary medical services, stability, friendships, community, programs and qualified staff. Their lives have, at times, been put at risk. They have lost familiar physicians and caregivers, who have been replaced by lower paid, less qualified staff. They have lost high quality day programs to be moved into poor babysitting situations.
Dr. Place further states: “The primary reason for changing the consumers living arrangements from a DC to community living facilities is to improve their quality of life by integrating them into non-institutionalized lifestyles.” She further adds “physical, emotional, and mental disabilities interfere with or prevent integration and some consumers are so physically disabled that they will never integrate in the community” and “while consumers have been moved to the community, it appears that the Department of Developmental Services (DDS) and the Regional Centers have not yet found a way to integrate consumers into the non-disability world. Simply busing them to McDonalds is not integration”.
Approximately fifteen years ago when Paul Ferrario and I attended our National Organization’s Initiative in Washington, DC we met with Senator Feinstein’s staff and they invited us to her Thursday morning breakfast. She was open to questions so I stood up and let her know why we were in DC meeting with legislators and about our fears for Sonoma Developmental Center. She went to the podium and she said “when I was Mayor of San Francisco and people were being taken out of SDC and all these homes were opening in the Bay Area and I was hearing all these complaints – I went out and inspected 40 homes – I didn’t send someone to do this, I went to see for myself and I can tell you I did not see ONE home where I would put one of my family members. I saw developmentally disabled children being on leashes when taken out for walks, homes that were filthy and lots of drugs in the refrigerators and very little food and she said I will spare you the horror stories.”
I know things have changed somewhat since then but not that much. There are still horror stories and the lack of professional help and transparency. I know some bad things have happened from time to time at SDC but at least these atrocities are reported by other concerned staff people and the situation is handled and stopped. Who is going to know what happens in these private homes? The Regional Centers don’t make regular visits or unannounced visits. I think the mortality studies tells the story.
I know when you visited SDC 35 years ago it was over crowded and under staffed, but with the hard work and dedicated of the families involved and the legislators at that time, SDC is now a state-of-the-art facility where the every day care is excellent. Yes, there have been unacceptable things happen even recently, but that is not the true picture of SDC.
Again, the every day care is second to none and the tradition of caring for this unique population has been handed down through the years for over 100 years. Now that the facility is the way it needs to be, you all want to close it and destroy everything we have worked to hard to achieve.
Mary O’Riordan
PHA Past President