Can the Sonoma Developmental Center be saved?

Linda Blum | Sonoma Valley Sun

Recently, a woman entered the lobby of the Sonoma Developmental Center Administration Building to keep an appointment with the director.  She noticed an elderly man standing there holding a small structure (a birdcage?) made of twigs. He saw her, put down the handiwork, rushed toward her, and folding her in a hug, exclaimed happily, “Mom! You’ve come!”  Then, looking over her shoulder, he asked eagerly, “Where’s my dad?”

The woman, to whom this man was a complete stranger, felt somehow compelled to hug him back.

Quickly an attendant appeared and led him away. “That’s not your mom, Len,” she said gently, “she won’t be coming today”.

I was that woman, and I know that encounter will stay with me forever, as the fate of the SDC and its residents is debated by politicians. The SDC is in a transitional phase right now, but it is fragile creatures like this old gentleman that the state wishes to displace into scattered homes all around California.

So what can we see as the future of the SDC – turmoil and upheaval to suit the needs of a cost cutting government, or safety and stability for its remaining developmentally, and severely medically disabled, residents?

We have written about its past, how it began in 1891 as a benevolent home for “feeble minded children”. And how the facility had evolved with the times, and the development of myriad medications, into a home for the care of the developmentally handicapped of all classifications.

Previous to 1969 there was no question that the Developmental Center would remain forever, as long as the walls stood. But with the passage of the bill known as the Lanterman Act, there was a seismic shift in perception. This legislation stated that people with disabilities, and their families, had the right to services and support that would let them live like any non-disabled person.

Thus began the turn away from large, integrated facilities, with all necessary services on-site, to small community based homes with services provided by private organizations on a cost-per-patient basis.

This is now the prevailing model, and the results are mixed. It works well for the less disabled-some of the autistic, those with Down Syndrome, and many physically handicapped clients. But it has not shown good outcomes for the severely non-functioning patients, perhaps even with serious behavioral problems, or criminal tendencies.  These vulnerable people cannot live in a group home with only a caretaker, and outside medical and psychiatric aid.

Critics of the current SDC bemoan its high cost-per-resident because the population has shrunk from a peak of 4,000 to 450 now. The staff is at 1,000, with about 2/3 of them licensed medical personnel. The cost per capita has become much higher because the state cut off new admissions as of 2012.

In Sonoma, as an alternative, there is a new state-of-the-art facility based on the community placement model, called Sweetwater Spectrum, which was financed by private means, to care for 16 autistic adults. The Executive Director, Deidre Sheerin, describes it as a home where the residents can have a “life with purpose”. They live in private units, with all amenities, but their families must contract with an outside company, approved by the state, for a caregiver and medical support.

The facility cost over $10 million to build, and each resident pays $3,200 a month for his room and board, and even more for the outside help.

In this last year, there has been an effort by the California government to study the effects of the eventual closing of all four developmental centers in the state. In May, Diane Dooley, the secretary of California’s Department of Human Services, established a task force with the stated purpose of creating a master plan for the future needs of the Developmental Centers. This group included community service providers, members of the Legislature, Developmental Department staff, and families of residents. Their distilled recommendations have been published in a draft this month, and perhaps the fate of the Centers is already decided.

As the Task Force draft states, “Each year Community Placement Plan (CPP) funding… is provided to regional centers to expand and improve services to meet the needs of DC residents transitioning to the community… The DCs will need to transition from large congregate 24-hour nursing and Intermediate Care Facility (ICF) care to a new model… the future role of the State is to operate mostly smaller, safety-net crisis residential services coupled with specialized health care resource centers and public/private partnerships…”

It continues, “As the population in the DCs has declined, the acuity level of the remaining residents has increased considerably. Today the individuals residing in a DC typically have significant behavioral support needs or are very medically involved.”

And there is the crux of the dilemma. Those patients remaining in the Sonoma DC and the other three Developmental Centers simply cannot survive in a community setting: their needs are just too great.

So why is the state not pursuing a less intrusive plan for these special people, many of whom are older and have spent most of their lives in a Center? For instance, consolidation of the population into one or two facilities?

One member of the Task Force, Kathleen Miller, who has a son at SDC, and is the President of the Parent Hospital Association, said in an interview that one solution being considered would be to shrink the footprint of the SDC, keeping as much familiar staff as possible, and expanding the center into a community resource, with a clinic, subsidized housing, and recreational opportunities.  She, unlike many others on the Task Force, knows first-hand how any disruption in the stability of their surroundings can send these fragile souls into despair.

Our Sonoma county Supervisor, Susan Gorin, is in favor of this far-reaching  plan, and pointed out to this reporter, that the SDC land now covers almost 1000 acres,  most  of which is  undeveloped and is a haven for wildlife. According to her, the optimum use of the land would be to “retain the Sonoma Development Center programs and services on the property, and explore other complementary and appropriate uses within the area that is currently developed.”

So the county and the Parent’s Association are in complete agreement as how best to save the SDC and to make it fully functional. There is already a coalition of local organizations formed to protect the SDC property, and to hold it as open land for use by all. (For more information contact: susan.gorin@sonoma-county.org)

What then is at stake here? The most poignant reminder of our obligation to save the SDC, perhaps in a more modern form, is the old man that thought a stranger was his mother, and who knows only this one, compassionate home. But the Coalition sums it all up: “The loss of the SDC facilities and open space to incompatible development would have far-reaching consequences, effecting hundreds of patients and their families, over 1,000 employees, support services in the local community, critical habitat for fish and wildlife, and the potential for recreation and public access.”

The Director of the SDC, Karen Faria, struck an optimistic note when she said recently,” I’m happy to be here and will be here as long as I’m needed!”

That we can only hope will be a very long time.


3 Responses to Can the Sonoma Developmental Center be saved?

  1. Jerra Letrich Hardy says:

    My thanks to the writer for this thoughtful piece. Rather than sensationalism it offers a clear assessment of the real issues. But I would like to offer what I think is at least one critical omission from every conversation about the future of developmental centers not just in California but nationwide: All discussions are based on either the misconception that the only profoundly developmentally disabled Californians already live in DCs or the belief that others that are similarly disabled are receiving equal or better care in the “community”. The contradiction is that in the “community” the autistic population is multiplying rapidly, developmentally disabled are still found housed in jails and prisons, the Task Force acknowledges the lack of necessary behavioral supports and regularly reports of abuses or neglect of DD in the community surface in the news. I suspect that thousands of California families caring for profoundly developmentally disabled in their homes are DESPERATE for help. Help and services that has been available to only those living in DCs and denied to date for their loved one. Developmental Centers revived and repurposed to serve as the hub of special services for the surrounding DD community and still offer residential care to all who want or need it, could offer our society the opportunity to finally walk our patriotic talk. My sister is 50 years old and lives at Lanterman Developmental Center. She is classically autistic and exhibits extreme aggression and self abuse. For the last four years most of her fellow residents have been placed into models of care that by design cannot meet their needs in a community also unprepared. With roughly two thirds of the DD population in So Cal and so many autistics reaching young adulthood I would suggest that there are countless families living in crisis and thousands of DD at growing risk as a result. Yet our closure marches on with little regard for the realities we all are facing. Apparently we are back to the old “one size fits all” mentality that once institutionalized even the mildly or moderately disabled. Now these most vulnerable of our neighbors are victims again of ignorance, arrogance, and fear from those with good intentions.

    • Linda Blum says:

      Ms. Hardy
      This letter makes a good case.
      You might want to send it as a Letter To The Editor, where it will be read by more people.
      Good luck.

  2. Fay Clinton says:

    Just a comment to the concerned parents whose family members reside in Sonoma or one of the other state developmental centers. My son once lived in Sonoma, and also in Fairview. He was also a resident in a large group home. He was treated well at Sonoma but was horribly abused at Fairview on two different occasions before he was removed and taken to the large group home. He lived in this home for about 20 years before it finally closed due to financial and other problems. I always knew he wasn’t terribly happy there but I listened to other parents who adamantly maintained that small group homes were unsafe places lacking in adequate staff and supervision. When my son went to a small group home he was immediately happier. I was amazed at the change and felt terrible regret at not exploring the possibilities of a small group setting before. My son is considered profoundly mentally disabled and has many physical and behavioral problems, so he is not unlike many of the residents of Sonoma. In the right setting, people like my son can be well cared for and managed by a well-trained and compassionate staff, with much more individualized attention than in a large setting. He is in a community based day program and lives in a family-like setting in a normal residential neighborhood. I understand that small group homes are not for every client but I urge parents to keep an open mind regarding facilities of this type as they might be pleasantly surprised at the level of individual care their family member will receive.