Arguments, answers at SDC

One of the most common questions that Karen Faria gets is what to call the 409 people currently on the rolls at the Sonoma Developmental Center: Residents? Patients? Clients? All of these are terms that have been used in the past, but now, says the executive director of the Sonoma Developmental Center, “They are the men and women who live at Sonoma Developmental Center.” And, she reminds us, “They are full citizens of the state of California.”

It’s a statement that helps sharpen the argument, and one that we encounter again and again in our three-hour visit to the 121-year old facility on Arnold Drive near Glen Ellen.

For reporters, it’s a rare event, “To reach out and make connections with the local media about the nature of the people we serve and services we provide,” as Nancy Lungren of the state’s Department of Developmental Services said.

Along with Faria and Lungren, Jorge “J.J.” Fernandez, a public information officer at SDC, is along to drive the minivan that takes us around the thousand-acre property – over two-thirds of which is undeveloped open space, a coveted haven connecting Jack London State Park and Sonoma Valley Regional Park.

Our visit is also doubtless prompted by pressure from two state bills recently introduced to save money by transitioning residents into community settings – ignited by a recent recommendation from the Legislative Analyst’s Office (LAO) to close this facility and a similar one in Fairview (Orange County).

The LAO also argued that the state has a legal obligation to promote the integration of individuals with developmental disabilities into community settings. The question quickly becomes two-fold: What is a community setting? And would that really be appropriate for all of the people here?

At Bentley House, where 27 people live in an Intermediate Care Facility – almost 200 more live in similar H-shaped houses on the campus – those questions rise to the surface. The people who live here are for the most part clearly, visibly afflicted with a variety of developmental disorders, such as cerebral palsy, Down syndrome, acute autism and intellectual disability. Some are in wheelchairs; one woman wears what looks like a bicycle helmet to prevent harming herself when she falls – which she apparently does fairly often. Others rock quietly in a corner, or mutter to themselves and the ghosts they live with; but they are people.

As house manager Cynthia Cunningham is quick to remind us, “It’s not a facility, it’s home.” There are artistic, musical and sharing programs for groups as well as individuals to help keep them occupied and engaged. The staff believes the programs are of incalculable value: “It makes a huge difference in the quality of life,” says Cunningham. “Everyone has the capacity to enjoy something.”

When we visit the Bentley kitchen and dining room, Cunningham shows us the dishware washed and ready for the next meal. Many of the dishes are modified with overhanging lips to help scoop up the food, some utensils are bent at unusual angles with thick handles for easy gripping. These are custom-designed features to assist the people with feeding themselves. “Otherwise people would have spilled food down their shirts all day, and they don’t feel good about themselves,” she says. “This is not just about training, it’s about improving dignity.”

Not far away in another building called Sunrise Industries, a dozen or so people are working – assembling rivets for a Sonoma construction company, feeding business papers through shredders or other simple repetitive tasks. Fernandez and the crew’s supervisor, Charlotte Jones, remind us several times that this is real work, and the people are getting paid through a contract with the Department of Labor.

A total of 67 individuals get paid or receive vocational training through Sunrise, and a handful work off-campus in Santa Rosa and Sonoma. They spend their wages by shopping at the on-campus Eldridge store, or forays to such local restaurants as Mary’s Pizza Shack, long a favorite destination. When asked what she likes to spend her money on, one woman busy slipping washers over rivets perkily answers “Cherry Coke!” Then, a second later, amends her choice: “Zero!”

To work with the people living at SDC, there’s a staff of around 1,300 employees in both full- and part-time positions, according to Lungren. These include professional care and nursing staff as well as administrative, managerial and maintenance positions. At most times there’s a one-to-one ratio between care staff and the inhabitants of the facilities and homes. But it’s not just “people helping people” at SDC.

“Hi Mickey! Hi Munchie!” Fernandez calls out the van window to two grazing miniature ponies by name as we drive by their paddock. There are other farm animals here as well, chickens, pigs, goats, llamas – this was formerly a self-sufficient dairy farm, Fernandez says, and working with the animals is an important part of daily life for many of the people living here. The connection between the special set of skills that the autistic can bring to animal management has been recently popularized by Temple Grandin, but it’s been practiced here for 82 years.

“The kind of residents that are at SDC are some of the most medically fragile and behaviorally challenged – sometimes both – in the state of California,” Supervisor Susan Gorin has said. Just as there is a “spectrum” for autism, from high-functioning to more debilitating pathologies, there are extremes of developmental disability here at SDC that make a transition into “community settings” seem unlikely, if not impossible.

These are the people we find in the nursing facility we visit, Johnson Home. There are some 184 people under this level of care, at several buildings on the SDC campus; many of them are as physically remote from “normal” as you might imagine – confined to cots, suffering from COPD, their bodies twisted with scoliosis and aberrant limbs, unable to speak in anything but grunts and moans.

Yet even here – perhaps especially here – their dignity is honored. It’s one of the first things Katrina Blankenship, the nursing coordinator for nursing-facility services, says. “This is their house. We’re very respective of their privacy and hope.”

Acknowledging they are very limited in what they can do, Blankenship takes us into the so-called “rocking and rolling room,” where physical therapists massage the residents, speak to them, share music and visual stimulation. The therapists become adept at understanding what their charges are feeling and trying to communicate though observation of subtle changes in expression, eye-rolls and raised brows, even variations in the limited vocal sounds they can make – perhaps a sigh instead of a moan.

Think, for instance, of an aging, quadriplegic man confined to a wheelchair, unable to speak, permanently attached to a ventilator and communicating by raising his eyebrows or twitching his cheek. Think of Stephen Hawking.

Of course there are no theoretical physicists here – at least none that we know of. But there are people with very unique physical needs, and some of these needs are managed at the medical-services department. It’s one of the most valuable and unusual of the SDC’s facilities: Here they make individual helmets for the accident prone, dining aids for the physically unusual, and specialized wheelchairs for people with one-of-a-kind bodies.

After showing us examples of the rigid, unforgiving metal and wood wheelchairs to which the handicapped formerly had to adapt, Irene Bachelder takes us through the steps of building a wheelchair for each individual who needs one, based on their measurements – creating the chair for the person – from wood frames, knife-cut Styrofoam molds, soft blue pads and Naugahyde covers.

For those who have been confined to a horizontal position for most of their lives, these chairs are life changing. “Just being able to see eye-to-eye with people,” she says simply, “makes a significant difference in their quality of life.”

In a nearby building Lisa Glover – who is, like most of the staff we meet, a multi-year employee of the facility – sets out several items on a table. They are recognizable as shoes, but only by a broad definition. Glover has made shoes at SDC for 15 years, and now runs the only such shop in the state, if not the nation, possibly the world. Requests for this custom-made footwear come from podiatrists, or from the patient or their families, or the doctor, or just staff observation.

Some of the innovations that came from making shoes like these include Velcro straps instead of shoelaces or buttons. Now these are made for the mass market by the millions in China – but very few places in the world are left to serve the one in a million.

Also on the table is a clump of wood, irregular and misshapen. It’s a replica of a foot that Glover has built a shoe for – a task that can take as long as 48 hours, but which results in giving someone who lives here the ability to walk, comfortably, for perhaps the first time in her life.

“Anytime you eliminate pain from a life argument,” says Glover, “You’re doing great.”

For the men and women who live at the Sonoma Developmental Center, and the men and women who work with them, this is the beginning and the end of the argument.