The smells of cool wet sand, freshly cut grass and flowers drying in the fields greet the participants of Bittersweet Farms every morning when they arrive to work. Approaching the mystical, Bittersweet Farms has been described by visitors from as far away as Japan as having its own "spiritual aura" surrounding it. The sense of partnership and peer modeling challenge even the most seasoned professional to distinguish staff from participant when visiting or on tour. In a disorder typically identified with limited social attachments, participants from Bittersweet Farms have served in wedding parties of staff, given eulogies at funerals, and are regular guests in staffs' homes for holidays. Ultimately what distinguishes the Bittersweet Farmstead model is the caring and sense of family that has been present since its inception.
Bittersweet Farms began in the mind of a dedicated and activist teacher named Bettye Ruth Kay in the mid 1970s. Shortly after public law mandated equal access to an appropriate education for all persons with disabilities, Mrs. Kay was hired by Toledo Public Schools to teach a class of high school aged students with autism. Her class began in a dark basement room below a gymnasium. The classroom quickly became her laboratory, with her students the beneficiaries of the most up-to-date research and her own innovative teaching methods. Mrs. Kay worked closely with a mother who was also a teacher who had given up her career to home school her autistic son in their own basement classroom. Mrs. Kay visited and researched vocational programs and began incorporating techniques and ideas for projects into the vocational training portion of her class. Finally, she visited a farmstead community in England called Somerset Court and met with Dame Sybil Elgar, its founder. The breadth of activity in a bucolic setting that farm living offered convinced Mrs. Kay that this was the most appropriate model for persons with autism. She realized that as her students "aged out" of school the future was bleak, consisting of a life filled with tedious, repetitious and often specially created jobs in workshops, life with aging parents or even placement in mental institutions. Understanding these implications and seeing her dream, she began organizing parents, professionals and business members in the community to rally to development a farm community in which persons with autism could work, play and live and grow into their fullest potential.
There were many stones in the path of Bittersweet's development. Legislators and the state board of Mental Retardation and Developmental Disabilities had to be lobbied, educated and ultimately convinced that Autism was a separate disorder with unique needs before they would even consider grants or funding any portion of the effort. Local philanthropists, service organizations and business persons had to be networked for funding and assistance. Finally, there was the ignorance and prejudice in the township where Bittersweet Farms initially was to be located. The local citizens from that township banded together and fought zoning variances that were needed so that they would not have to live near people with developmental disabilities. (This was prior to the Americans with Disabilities Act being passed.) The first location for the farmstead was abandoned, the land sold and a second location sought. This dark moment for Bittersweet soon brightened when a new location was found that had a lush forest, open fields, and is adjacent to a park with hundreds of miles of hiking trails. It was close to a small community, Whitehouse, that welcomes our participants into its grocery stores, restaurants, banks, churches and feed stores. Bittersweet Farms is now one of the largest employers in that community and has become a source of pride for its citizens.
One of the frequently heard comments from visitors to Bittersweet is, "Gee, I wish I could live here." The farm operates three fully functioning greenhouses, a woodshop, painting program served by an artist in residence, weaving and fabric arts department, ceramics studio, animal husbandry program, vegetable and flower gardens, landscaping and janitorial enclaves, kitchen meal preparation program and a recycling program. Every program has an entire range of activities designed to meet the individual abilities of each participant. No matter what the person's level of functioning, every person at Bittersweet is able to contribute something in any area they choose to work.
Despite the quiet farm like appearance, one should not be misled into thinking that Bittersweet is trapped in some 18th century Luddite mindset. Our day vocational program is comprised from persons who come from area group homes, our own supported living program, their family homes and the residents from our main campus facility. Participants from Bittersweet work in local restaurants as part of an outgrowth of our meal preparation program, landscape and mow at community homes and one staff goes with a participant to his family home where he has a pie baking business. Bittersweet recently got a grant for a computer lab and even prior to that one the participants was doing all the online food purchases for the entire facility. The facility encourages any individual staff that has an interest, ability or hobby to share it with our participants so that they can also be enriched.
Bittersweet does not subscribe to any one theoretical model of treatment. Since we believe that every individual is unique, and since the etiology of the autistic syndrome is known to have multiple causes, it only makes sense that the model addressing it should have multiple treatment approaches. We incorporate holistic and dignified operant behavioral conditioning, sensory integration, massage, occupational therapy, exercise, balanced diet, medication and a unique speech program that has evolved from the experience we have gained over the years. One of the keys is the staff's ability to understand the autistic person's perspective and to help identify the antecedents to the negative behaviors typically associated with the disorder. Most importantly, Bittersweet works to find constructive manifestations of negative behaviors so that the person with autism does not merely overcome them, but converts them to positive accomplishments about which he or she can feel proud. For example, a person who pulls hair or tears clothing might be asked to tear cloth for rag rugs or a person with glass breaking issues might be engaged in recycling.
Individuals wanting farmstead or urban-based services contact Bittersweet daily. Sometimes we get calls from families needing respite. Many groups tour our facility with intentions of replicating it. Many seek out behavioral, educational, or vocational advice from us regarding persons with autism. We have been visited by groups from all over the world and Bittersweet has been the inspiration for several new farm based programs. Constraints placed on our individual service capacity by the State of Ohio led to the realization that the best way to serve the larger autistic population is to help others through consultation. We now have a service that addresses all these issues and we make our staff available for a fee to groups, individuals and agencies needing help. Part of our consulting service is the Bittersweet Academy, a program was formed to help replicate the farmstead model or a portion at other locations.
We continue to face many obstacles at Bittersweet and most of them emanate from outside the farm. Most frequently these obstacles are based on well meaning, albeit ignorant, preconceptions. Many believe that all persons with autism should be living "in the community". Community living is typically associated with apartment living in a more urban setting and work with job coaches throughout the area. We acknowledge that this lifestyle is beneficial for many individuals. At Bittersweet Farms we have nine individuals who live in supported living homes on home based community waivers. We also know, based on our experience, that these settings, by virtue of their geographic disparity, have less supervision and support. Further it is easy for some individuals with autism to become even more isolated without the structure that the farmstead community offers. Finally when participants to live and work together, they are able to pool resources to create a better community for themselves. At Bittersweet's main campus, we have nurses on site from early morning to early evening and on-call 24 hours a day. Our main campus is able to offer supports, and share staffing and expertise with our community based living program that they would normally not have access to in an exclusively urban based setting. In a residential setting additional staff are always readily available if a crises should arise. This is not the case in urban based waiver programs; the most immediate response that staff must rely upon is frequently the police and this involvement often results in a subsequent psychiatric admission or even arrest.
Our experience comparing community based urban programs to residential treatment shows a disparity in cost and a lower quality of service. When comparing costs, one must take into account what is known as cost shifting. Cost shifting is moving the obvious costs of a residential program and comparing them to urban based waiver program itself while ignoring the hidden costs of an already over taxed mental health systems and the courts. If these supplemental costs are included and one figures in the cost of occasional psychiatric admissions, police or court involvement, then the cost of the waiver increases exponentially. Thus to provide a similar quality of service for individuals with the same level of involvement in the disorder, it is actually less expensive to serve them in a farmstead setting with access to all the opportunities previously mentioned than it is support them in an urban setting.