MONKTON — It’s normal for any parent to worry about what their child’s life will look like after leaving the nest. 

But for the parents of individuals with developmental disabilities, that question is one filled with frightening uncertainty as they contemplate where their children will find the support and community they need throughout adulthood. 

“A lot of the parents I know, they’re getting older, and their adult children are living with them,” said Elizabeth Campbell, whose 26-year-old son Jesse has Down Syndrome Regression Disorder. “It’s oppressive living with your parents your whole life, and besides, your parents die and then it’s a crisis for the family and for the kids.” 

Housing choices for Vermonters with developmental disabilities have been limited in recent decades, but newer options are starting to crop up around the state. Intentional, residential communities for adults with developmental disabilities have formed in Hardwick and Middlebury, and now, another one is taking shape in Monkton. 

Campbell and a dedicated team are working to get the new Riverflow Community up and running. The Monkton community will soon offer a place for people with and without intellectual disabilities to live, work with and celebrate one another. 

“Riverflow is a kind of guardian community for everyone involved,” Campbell explained. “Everyone needs to be a part of something that’s meaningful and important.”

A STATEWIDE PUSH 

Campbell has spent years pushing the state to expand housing options for Vermonters with developmental disabilities. She noted Vermont’s current go-to housing option is a “shared living” model likened to adult foster care, where providers are compensated for supporting one or two individuals with developmental disabilities.  

“While there are some wonderful shared living providers, that is the exception and not the norm, and I know that because of all the parents I’ve heard from,” Campbell said. “My husband and I wanted community for Jesse and more stability and the option to live with peers, so we advocated, but nothing changed.” 

Campbell continued advocating after the death of her husband in 2020. She decided to write an op-ed. 

“I wanted to let Vermonters know that despite being such a progressive, thoughtful state in so many ways, we were behind the times and that we could do better than adult foster care,” she recalled. 

The piece was widely circulated, and Campbell soon began hearing from other aging parents in her position seeking more options for their adult children. 

She drafted a petition garnering more than 700 signatures statewide, and she worked with other parents to form the Developmental Disabilities Housing Initiative. The parent-run advocacy group started with around 100 parents across the state and pushed for the creation of housing options beyond the shared living model. 

“We hosted two statewide forums on housing for adults with development disabilities, we wrote several op-eds, we did interviews,” Campbell said. “Most importantly, we targeted legislators and let them know that parents like me were in a terrible position, getting older and not having a secure, stable position for their children.” 

Their efforts led lawmakers to approve Act 186 in 2022. Among other initiatives, the law created a position within the Department of Disabilities, Aging and Independent Living to help expand housing options for Vermonters with developmental disabilities. 

The legislation also provided $500,000 in pilot planning grants to support development of alternative housing options. Campbell teamed up with Waitsfield residents Amy and Jim Caffry to apply for an Act 186 grant to build an intentional community for adults with developmental disabilities. 

The team was awarded a $169,500 grant and got to work. 

Campbell first reached out to Hannah Schwartz, an expert on intentional communities for adults with developmental disabilities. Schwartz helped form Hardwick’s Heartbeet Lifesharing community in 2000, where she served as executive director for 20 years. She’s also previously worked with the Yellow House Community in Middlebury, another intentional community for people with developmental disabilities. 

Both communities are part of, or modeled after, the Camphill movement, a social change initiative dedicated to creating life sharing, therapeutic communities where individuals with and without intellectual and developmental disabilities live, work with and care for one another. According to the Camphill Foundation, the international movement has grown to include more than 100 communities in 15 countries around the world. 

MONKTON COMMUNITY 

The Riverflow team is now working to bring that model to Monkton. 

Similar to other Camphill communities, Riverflow’s mission is to support each of its inhabitants in forming friendships, gaining vocational skills and pursuing dignified, self-directed lives. The team is also committed to welcoming adults with developmental disabilities who have higher support needs and thus, are currently very limited in housing options. 

“One of our individuals, there were 17 home care providers that turned them down,” Schwartz said. “To go through that process as a family and a friend with special needs, that’s so undignifying and so scary.” 

The team has purchased an eight-bedroom house at 57 Cedar Lane in Monkton to house Riverflow’s first community members. Four founding residents, or “friends,” will live in the house, along with live-in staff and volunteers. 

Campbell discovered the Monkton home by chance while on a bike ride through the area. It was exactly the kind of place the team was searching for; a single-story home with lots of space for community members, situated on 30 acres that’ll allow Riverflow to keep growing. 

One wing of the house even offers four bedrooms with ensuite bathrooms for Riverflow’s founding friends. 

“What’s weird about this house is it’s exactly what we’d build,” Schwartz said. 

While full of potential, the house had been abandoned for around eight years and needed lots of love.

The Riverflow team is working to fix up the property and make necessary renovations, such as those needed to be recognized as a “Therapeutic Community Residence.” Riverflow would need to receive that designation before opening. 

The team is also tackling larger projects, like transforming the former galley kitchen into a more accessible space with room for all community members to get involved in food-focused activities. 

Creating space for everyone to bring their unique skills and interests to the table is a key part of Riverflow’s mission, and that of other Camphill communities. 

RIVERFLOW COMMUNITY MEMBERS Duncan Caffry, Jim Caffry and Jesse Campbell stand outside the Monkton home that will soon offer a space for individuals with and without intellectual disabilities to live and work with one another. 
Photo courtesy of Hannah Schwartz

“A lot of what you do in life sharing is people are always included and everyone finds their way of being in the mix,” Schwartz said. “That’s what’s so wonderful about the communal life, everybody’s talent is celebrated and utilized.” 

The community is committed to person-centered care, an approach that extends to daily activities and other aspects of life at Riverflow. 

Day-to-day programming at Riverflow will likely incorporate activities like baking, fiber arts and woodworking, though Schwartz said the programs that unfold at the community will ultimately center around the interests of its members. 

“A lot of it starts with who the individuals are and what they’re like, so there will be a period of time where we’re getting to know them,” she explained. 

NEXT STEPS 

Riverflow is hoping to have its first community members move in by Oct. 1, a timeline dependent on fundraising efforts and completing needed renovations. 

The team is looking to raise up to $1 million, which would allow Riverflow to fully own the Monkton property and complete renovations. Raising $350,000 would help knock off the most needed projects and ensure an October move-in. 

The team has launched a fundraising campaign and is applying for state grants. 

“If we get that $1 million, we’ll move four adults with development disabilities with higher needs into this house,” Campbell said. “And we’ll change the lives of their parents, who like me, can for the first time have some peace.” 

Aside from donating, there are other ways community members can get involved in making Riverflow a reality. Volunteers are helping bring the neglected landscape back to life, and the team welcomes donations of labor and furniture to fill the house. 

Once the work is done, the team plans to continue inviting the surrounding community to take part in life at Riverflow, such as through community meals open to the public.

Schwartz and Campbell described Riverflow as a “porous community,” where everyone is welcome. 

“Everyone knows that people are starving for community, ways to connect,” Campbell said. “We see Riverflow as a way to facilitate that, not just for our adult children with intellectual disabilities but all the people who are going to find a way to connect.” 

The Riverflow team is also looking to hear from prospective volunteers and coworkers (live-in staff) who’d like to live and work in the community. 

“It’s a really great gap year for people who are wanting to take a break between high school and college and want to just tap into their core values before stepping into college,” Schwartz said of the volunteer role.    

Once the first home is completed, the Riverflow team plans to expand the community with the addition of three more homes, a barn, a community center and other amenities. 

Team members acknowledge bringing Riverflow to life has been far from easy, but they’re passionate and confident about the community they’re building. They feel they’ve already formed a dedicated group that so far consists of a board of directors, founding friends and other contributors. 

“We have a really committed board with a lot of skills, so there’s not a doubt in our minds that 30 years from now, this will be continued,” Campbell said. “We’re here to stay.” 

While they’re excited about the start of the Riverflow Community, team members note many Vermonters with developmental disabilities are still in need of housing options that allow them to live fulfilling, dignified lives. 

The team is hoping Riverflow shows others around the state that creating these types of communities is possible and essential for those Vermonters and their families. 

“That’s such a hopeful message,” Schwartz said. “It seems impossible, and I’m hoping that just by showing with sheer will and skill and determination, we can do these things.” 

Campbell echoed that sentiment. Her son Jesse is one of the founding friends expected to move into Riverflow later this year, but she acknowledges many Vermont families are still in the troubling position she found herself in years ago. 

“I feel like with Riverflow I got a lifeboat, but it’s not a great feeling to be in that lifeboat when you know so many families do not have a secure future for their adults with intellectual disabilities,” she said. “I hope that Riverflow is a model that will be replicated in other parts of the state so other parents feel the great relief that Riverflow has brought to me.”  

Those interested in learning more about Riverflow can visit www.riverflowcommunity.org.