After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.
“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future. When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day.
I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy.
It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely. Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships.
I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.
Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs.
We have also focused on developing a good working relationship with the local community which benefits everyone involved. Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.