Like any proud mom, Dr. Carolyn Klebanoff, easily chats about her daughter Jane’s many talents, interests and abilities. Among that long list of achievements is Jane’s independence at age 22.
She lives away from her family home in San Francisco, thriving in Sonoma at Sweetwater Spectrum, an innovative supportive living community for adults with autism.
“I have been euphoric, I have to say, with the transition she’s made to Sweetwater,” Klebanoff said. “She is so happy there.”
Jane moved to the 2½-year-old residential community in June, one of 16 young adults living “life with purpose,” the phrase used at Sweetwater to describe the opportunity for self-expression and growth encouraged there, through enrichment choices and interactions within the campus and broader community.
The nonprofit organization was founded by a group of families, including Jane’s mother, Klebanoff, and father, Dr. Fred Cohen, along with a collaboration of professionals and civic leaders to address the growing need for autism-specific housing. It’s estimated that more than 80,000 adults across the country are on waiting lists extending for eight to 10 years for residential autism facilities.
According to the U.S. Centers for Disease Control and Prevention, about one in 68 American children tests positive on the autism spectrum. The complex disorder is characterized by difficulties with communication and social interaction, with no two cases alike. Many with autism are especially artistic and intelligent as well.
With both an advisory board and a board of directors in place, Sweetwater manages the residential community. It does not provide direct support or care to residents; those services are arranged through outside vendors.
Its mission is to challenge each individual to reach his or her highest potential. A small staff and community volunteers work along with care providers to encourage residents to become involved and establish a sense of belonging within Sweetwater and the Sonoma community.
“With so many vendors, residents, families, staff and community members, to have it work as well as it does is really nice,” said Suzanne Phillips, the enrichment manager who coordinates classes, programs and social events.
The Sweetwater campus, which is open but gated, features four 3,250-square-foot homes with separate bedrooms and bathrooms for each of the four residents, a spacious community building, in-ground therapy pool and two hot tubs, and outdoor areas for dining, badminton and table tennis. Residents are free to come and go as they please.
More than an acre at the rear of the property is dedicated to sustainable farming, with rows of crops, a large greenhouse and a 20-hen chicken coop where residents can gather fresh eggs. Farm manager Luke Carneal oversees programs for residents to help grow, pick and sell produce and microgreens to local restaurants and the public. (Fresh veggie-box delivery can be ordered at email@example.com.)
The Sweetwater project was designed to address the sensitivities of those with a full range of autism spectrum disorders based on groundbreaking research conducted in 2010 by the Arizona State University Stardust Center and School of Architecture that focused on autism-specific housing. The Sweetwater campus eases sensory overload, for example, with designs that reduce sound and visual stimulation and allow for direct sight lines that assure expected routes.
“It is so gratifying to see Jane thriving considering what was just an idea on a piece of paper a couple of years ago,” Klebanoff said.
The $10.4 million pilot project has been attracting international attention since it broke ground in September of 2011 in a residential neighborhood just west of Sonoma Plaza, within walking distance to the historic town square.
Visitors from as far away as Australia and Dubai have toured the nearly 3-acre campus, with inquiries coming in daily.
“These people are desperately looking for something, and there’s nowhere to refer them,” Phillips said. “There’s a huge need. We get calls daily from all over the world.”
Sweetwater was created as a sustainable model for replication nationwide. Current residents range from ages 22 to 38, with a wide variation of autism spectrum levels.
“Some are high functioning to not so high. Some need 24-hour help,” said Carol Patterson, the interim executive director.
Roommates are mutually agreed upon (one house is co-ed) and residents make their own decisions about everything from cooking meals to how they individually spend their days.
“It’s not just one size fits all,” Patterson said.
Residents pay rent and activities fees, with some subsidies available to assure a diverse community regardless of finances.
More than 200 donors have provided support, with commitments of more than $8.2 million to date. Ultimately, after becoming fully self-sustaining, contributions will help enable Sweetwater to create similar communities to help with the specialized housing crisis.
A “very strong” finance committee is in place, said Patterson, a former certified public accountant who is conducting an organizational assessment and “offering up suggestions and ideas” to help with future budgeting, funding and documentation.
Patterson calls funding “an uphill battle,” with grants “very hard to come by.”
For residents like Jane, who loves dancing, bowling, traveling, swimming, horseback riding, yoga and skiing bunny slopes, Sweetwater is simply home.
With limited verbal skills, she can’t fully articulate her happiness in Sonoma, but after she goes on outings with her family, Jane enthusiastically leads them back to Sweetwater.
“Sonoma is so incredibly welcoming and supportive of this effort,” said Klebanoff, Jane’s mother. “It’s a win-win-win all the way around.”
For more information, call 996-3104 or visit sweetwaterspectrum.org.