Bittersweet Farms: The Farmstead as Service Provider
What do you get when you combine an intrepid public school teacher, a classroom of young autistic adults, and a vision of partnership and mutuality? Bittersweet Farms. Known as the gold standard in farmsteads, this Ohio non-profit celebrates its 30-year anniversary this month. Its mission? To positively impact the lives of individuals with autism and those whose lives they touch.
Bittersweet Farms was founded in 1983 by Toledo school teacher Bettye Ruth Kaye, who was hired to teach autistic students. “Her [1970’s] class met in a room underneath the gym,” Bittersweet Director Vicki Obee-Hilty notes. “It was not about inclusion.” However, Kaye was determined to educate her students; to this day, Bittersweet structures its offerings around Kaye’s idea that personal engagement is key. Obee-Hilty explains, “We find tasks that are meaningful to each individual, where a person can see an end product.” The emphasis on concrete tasks stemmed from Kaye’s teaching experience. Her students needed physical activity, and she saw that they were more responsive when she partnered with them in completing tasks. But students had few opportunities to learn outside of the classroom. Determined to change that, Kaye traveled to England and met Dame Sybil Elgar, the founder of the Society for Autistic Children (now the National Autistic Society). Elgar also founded Somerset Court, a farmstead community for autistic adults. Kaye was inspired, and when she returned home, Bittersweet Farms was born.
Residents & Staff
Bittersweet Farms began with 15 residents, and an aim to increase their self-sufficiency and quality of life. However, the vision expanded with the demand for autism services. As Obee-Hilty recalls, “People started knocking [on our door] because it was autism-specific.” In the 1980’s, the frequency of autism was approximately 1 in 10,000. Now, it’s 1 in 50, and the demand for programs that serve autistic adults has surged. In 1989, Bittersweet built another house to accommodate five additional residents, bringing them to their current 20. The organization also operates a day program with 52 participants, and provides supported living for 19 individuals who live in HUD housing.
At present, Bittersweet has three campuses: Whitehouse (17 residents), Pemberville (3 residents) and Lima (adult day habilitation and community recreation). Expansion was fueled by increased need, but even so, Bittersweet is careful when pairing people residentially. There’s space for a fourth resident at Pemberville, but the organization is committed to finding the right fit before filling it. And when it began providing supported living services, Bittersweet Farms formed an admissions committee. As Obee-Hilty says, “We only want to work with individuals if we think we can meet their needs, with families who are good partners.” Individuals’ behaviors can make selection challenging. One potential resident struggles with OCD and a Mountain Dew fixation; living near supermarkets has been disastrous. As the demand for community-based programs increases, some criticize the farmstead model as isolationist. Yet for certain individuals, living in urban areas poses a health risk. As Bob St. Clair, President of the Bittersweet, Inc. Board of Directors and parent of a participant, notes, “We want to get people in the community, but … one shoe doesn’t fit all.”
Bittersweet’s services are always in demand. However, finding appropriate housing and retaining support staff are significant hurdles. Obee-Hilty says, “Even in this economy, we struggle to have enough workers.” Retention is higher for day program staff; several have served for 15-20 years. However, Obee-Hilty cites a 65 percent annual turnover rate for residential staff, saying, “If you can get an employee to stay for two years, you’re doing well.” Residential staff work evenings and weekends, and their jobs are demanding. And while fair pay and benefits are important, money isn’t their primary motivator. Instead, relationships with residents and a desire to contribute to their well-being top staff’s list of reasons to stay.
The First Resident
And no one has been at Bittersweet longer than Beth Meyer, 51, the first Bittersweet Farms resident. Meyer loves being outside, saying, “It’s a problem, when you get people cooped up in a building.” Far from being “cooped up,” Meyer’s outgoing personality has contributed to Bittersweet’s success. In March 2013, she spoke at the FRED Conference, which promotes agricultural communities as a viable option for adults with special needs. And Meyer’s many responsibilities keep her busy. She cuts grass, cares for animals, splits firewood, fixes doors, and fills vans with gas. However, she does miss camping trips of days gone by. Now that Bittersweet has expanded and residents have aged, strenuous adventures are a thing of the past. “We do trips,” Meyer says, “But not like we did. We’re a bigger group, with a wide range of needs.” But Meyer herself isn’t slowing down. She has participated in Special Olympics downhill skiing and swimming since 1990, pursuing her dream of going to the World Games. In addition, Meyer serves on the board of trustees for The Arc of Lucas County, and has a part-time job working on a tourist railroad. Every Saturday, Meyer completes track work; she’s held the job since 1999. “My skills and talents are put to good use,” she says.
An Active Life
According to Jan Cline, Bittersweet Farm’s Training and Consultation Director, Meyer’s sense of contribution is the rule, rather than the exception, at Bittersweet. In fact, what impressed Cline during her first visit was that she couldn’t differentiate staff and residents at a glance. She recalls, “Staff weren’t dressed in white coats ... People were working together in the field. It was delightful to explore that possibility, that everyone’s working equally well.” Bittersweet has made such partnership central, with a holistic approach that integrates learning into daily life tasks. Cline recalls working with a man who didn’t understand the concept of wet and dry. However, he loved animals, and Cline had him teach her about the difference between “wet” and “dry” animal stalls. In turn, she used his explanation to teach him about wet and dry clothing. (On her first day, Cline asked Kaye, “Are there supplies to complete assessments?” Kaye’s response: “Anything Mother Nature provides.”)
So how does Bittersweet assign tasks? Cline describes a process of clueing into individuals’ wants and needs, and translating those into productive tasks. For example, one woman ripped her clothing compulsively. Cline asked, “What is that activity providing? How can we redirect that energy more efficiently, effectively, and socially acceptably?” The woman needed the physical act of ripping, as well as the attention it garnered. At Bittersweet, she was asked to rip fabric for weavers. Gradually, staff increased the strength of the fabric, providing positive feedback throughout. Staff then taught the participant to create coasters. She no longer rips clothing; instead, she weaves on a rug loom. How do staff stay faithful to this time-consuming process? Cline says, “[Participants] are the best teachers … [As staff], you are a teacher and a student.” Participants teach staff their particular modes of learning and giftedness, and in turn, staff provide opportunities for participants to shine. Once, when sliding door fell off a van, Meyer utilized her skills to replace it. She remembers Kaye’s affirmation: “You genius.”
Parents see the difference this approach makes. St. Clair is also a parent; his daughter, Katherine, 38, is a part-time resident. Her father notes, “She’d rather be home, but Bittersweet is the best fit.” He accommodates her desire for home and her need for engagement that Bittersweet provides, making a 70-mile drive to Bittersweet twice weekly. And despite her initial reluctance, Katherine has become part of the community. She currently enjoys swimming, artwork, and horse care. (Due to her comfort level with the barn environment, she recently began drawing there … a task she wouldn’t attempt in Bittersweet’s art studio.)
Though residential services are an integral part of Bittersweet’s identity, the organization also serves family members and providers. Bittersweet developed a three-day curriculum to share its core principles, called Bittersweet Academy. Staff members teach and residents participate; the course emphasizes sensory needs of individuals with autism and integrating proprioceptive activities into daily life. Bittersweet also provides local families with respite supports through Friday Night Fun, an activity night for autistic adults. Social Skills and Life Skills groups are offered on a regular basis as well. Such programs are a growing part of Bittersweet’s work; Obee Hilty says, “Parents are in it for the long haul, so we ask: How can we help them?”
According to Bittersweet Farms’ 2011 Annual Report, 94 percent of revenues came from services provided, and 2.4 percent from donations and grants. And despite the recession, donations are up. Obee-Hilty says that downsizing their calendar has been key; the events that remain have been successful. Last summer, Bittersweet hosted “Farm Fresh Dinners,” featuring residents as bartenders. “We didn’t ask for money,” Obee-Hilty says, “and we collected over $7,000.” Bittersweet does a yearly donation drive, but most of their funding comes from Medicaid waivers. (Its supported living program and others are funded through the newer waivers, but their 20 residents are funded through the older ICF-MR model.) In Bittersweet’s current budget of $5.5 million, just $240,000 comes from grants and donations. However, donations have been a valuable part of the organization’s property acquisition. The Lima site was donated, and the Pemberville property acquired at a discount.
The Farmstead Model
Bittersweet Farms enjoyed relative anonymity in its early years, but times have changed. St. Clair observes, “We were the best-kept secret, but now people are aware … It’s not the amount of people you serve, but the quality of your service.” He remembers a 63-year-old resident showing off her artwork; she radiated pride and contentment. However, St. Clair says, “For the first two years … she didn’t want to come out of her room.” The transformation astonished him. Far from being “disconnected” in a rural area, this woman had come alive. Likewise, Obee-Hilty says that Bittersweet isn’t isolated. It’s two miles from a small town, where participants bank, visit the library, and shop. “People in town know our guys by name,” she says. “It’s a forgiving and nurturing environment.” It’s also a 20-minute drive from Toledo; thanks to a fleet of vehicles, transportation isn’t a problem.
In response to service model inquiries, Bittersweet has begun offering a forum for those interested in farmsteads to connect and share their experiences. Obee-Hilty co-founded Agricultural Communities for Adults with Autism (ACAA), which hosted its first summit last year. Sixty individuals attended; most had either formed agricultural autism communities or were interested in doing so. The summit was well received, and Cline was impressed by the diversity of attendees. “Some attendees were in the conceptual stage, others were beginning to plow the earth, and others were established. It was a dynamic conversation,” she says. States have different standards for congregate living, but that didn’t stop participants from conversing. Be it a farm or garden, a shared interest in agricultural supports provided common ground.
What does the future hold for Bittersweet? First, it aims to create jobs, and has begun a Community Supported Agriculture (CSA) program. Participants make pesto, sell it to local grocers, and receive the proceeds. Future plans include developing a storefront for the business, allowing individuals a community-based employment setting. At present, Bittersweet pays participants minimum or sub-minimum wage, depending on productivity. They also hire participants to do lawn mowing and janitorial tasks. But Bittersweet’s growth lies not only in terms of the individuals they serve, but in their ability to reach out to the wider autism community. Bittersweet was a trailblazer in terms of services for young adults, and now, it stands poised to educate elder care providers as well. Obee-Hilty notes, “Elderly individuals [with autism] are currently being under-served in many settings. We’re considering how can we educate care centers as [individuals] age.” And when asked about the secret of Bittersweet’s own longevity, Meyer says, “It’s a strong place. They got it started, and got it started good."