Sonoma’s Sweetwater Spectrum sets the standard for special needs housing

For parents of young children with special needs such as autism, worry is a way of life. They worry about the child’s special education structure and protecting the child from bullying. And as parents age and their kids become adults with special needs, they worry about where the child will live when the parent dies.

“I pray that I live long enough to make sure that he is OK, and we’re able to develop some sort of plan for him,” said Celeste Winders about her son who is on the autism spectrum.

Her son is almost 12, and she has time to make a plan for him before he reaches adulthood, but thousands of aging parents with adult special needs children across the nation are recognizing that there aren’t a lot of options for their children after the parent dies.

Susan Houghton said that about eight or nine years ago she and her husband started to think about just that, and what the next steps would be for their autistic son post-high school. Finding Sweetwater Spectrum in Sonoma spelled some relief.

Sweetwater is an innovative planned housing community for adults with autism, with both private living quarters and shared community spaces. Deep thought went into the design of the buildings to address sensory and other needs of their autistic residents.

“Sweetwater was a beacon in a sea of uncertainty for parents of children” with special needs, Houghton said.

Kory Stradinger, executive director of Sweetwater, said that interest in the Sweetwater model was instant and as more people learned about it, word spread. The founders decided to share their experience developing Sweetwater and held the first Replication Symposium in 2019. They weren’t sure how many people would attend, but 75 people from 10 states – and one from Quebec, Canada – came to Sonoma to learn how to set up their own version of Sweetwater Spectrum. Of the attendees 75 percent were from California, Stradinger said.

This year the coronavirus pandemic sent the symposium online and registration grew, allowing people from outside the country the ability to participate live, or wait for the recorded version and watch at a time conducive to their time zone.

“The participants in this year’s symposium were from all over the country and several outside the country,” including one from Scotland, Stradinger said. About 20 percent were from the west coast, and the rest were about evenly split from other regions across the nation.

Everything is covered in a series of sessions scheduled over six weeks and hosted by Stradinger. From starting a capital campaign, nurturing relationships with donors, operations, building and construction, working with service providers and funding agencies, financing and fundraising, and the legal structure, all aspects of developing a project like Sweetwater is shared.

Co-founder Mark Jackson said not all who are interested in the Sweetwater model will be able to replicate it exactly, but clearly there is enough interest in and need for the concept that people are taking bits and pieces and using Sweetwater as an inspiration.

Within the next 15 years more than 500,000 adult Americans with autism will be in search of housing due to aging parents, according to Autism Speaks. These adults with autism are too old for continued support through special education services they received in their youth, and about 80 percent of adults on the autism spectrum live at home with their parents, according to a 2008 Easter Seals report. The report said there are waitlists for affordable, appropriate housing.

Houghton is among a growing number of parents who, like the founders of Sweetwater, took the matter into her own hands and developed a housing project, Sunflower Hill at Irby Ranch in Pleasanton.

“Sweetwater set the standard and continues to set the standard for families of children with special needs,” Houghton said.

Bob and Lauren Jones followed just about everything Sweetwater did in developing Cape Cod Village in Orleans, Massachusetts, which opened in December, 2019. Jones’ son attended a residential school with Mark and Patty Jackson’s son, and said the couples talked about where their children would live after the parents died or were incapable of caring for their sons.

“The Jacksons were our inspiration,” Bob Jones said. “They took the bull by the horns” and made Sweetwater happen. “They were real groundbreakers and led the way with this kind of project. They really had great vision.”

Larry Grotte, who developed a similar model with some variations in concept and execution to best suit his disabled son’s needs, said there are “so few projects” such as this around the country, and the need is increasing. Without these projects, when the parents die, the adult children risk being “wards of the state.”

“One and a half percent of the U.S. population are special needs,” he said. “The problem is only going to grow.”

Sweetwater and the project Grotte developed—Sonoma Life—are “complex” and “not easy to do.”

Grotte said the City of Sonoma deserves to be applauded for the way it embraced Sweetwater and later Sonoma Life. He said the planning department and others in the city were understanding and supportive, and the community of Sonoma has been equally so.

Grotte faced NIMBYism (Not In My Backyard) in Windsor where he was working to build something similar to Sweetwater, and eventually gave up. Jones said governance around these types of projects create their own obstacles, and it took 10 years to get Cape Cod Village completed. Finessing their way through was made easier by tapping into Sweetwater’s depth and breadth of experience, they said.

Using Sweetwater’s model helped Houghton navigate the path to getting Sunflower Hill built.

“Sweetwater was built by parents of special needs children who have been there, done that,” she said. “I’m so grateful to Sweetwater for being” innovative and forerunners, she said. “They were the proof point.”

Contact Anne at anne.ernst@sonomanews.com.