So much talk this week about agricultural communities and autism… the autism blogs and listservs are buzzing about the FRED conference that just happened in California (Farms and Ranches Enabling people with Disabilities). There has been an overwhelming response to the conference nationwide. It is so inspiring to see some of these long-term communities continue to grow and succeed… check out these agricultural communities of adults with autism. Families are talking about working together with others to create their own farm for their family members. Again and again, the talk ends up focusing on the lack of funding, the lack of support for projects like these from the very organizations that should be helping.
For those of us whose lives are affected by autism, we ‘get’ why the farmstead model is such a good option when thinking about a life of independence for many adults on the spectrum. Tranquility. SPACE. Animals. Nature. SPACE. The freedom to be who you are … free to hoot, jump, pace, flap, stim, and talk talk talk …. without judgement. The freedom to CHOOSE when and how you want to interact with others. Life on a farm does not have to be isolating, there can be many opportunities for socializing with very little effort. But having that CHOICE to be alone when there is a need to recharge without interaction with others… that choice is priceless for many with autism.
But since the 1970’s, the movement has been towards non-congregate living for people with disabilities. It became the accepted belief that a life mainstreamed into society was best… that the ‘least restrictive’ environment was an environment where the individual with a disability was part of a community that consisted of mainly non-disabled individuals. The pendulum had swung all the way over to that other side, and now for many years the government and other funding streams have not wanted to consider new ‘congregate’ settings (settings where non-related people live together) as viable options for independent living.
My own personal (and very controversial) belief is that this has been extremely over-simplified… after 35 plus years working in the disability field and 15 years in housing…. I have seen many many desperately lonely people living in the ‘community’ with few friends or connections and whose families have long since let them go. On the other hand, some of the happiest people with disabilities that I have met either live or work in fairly large congregate settings with their best friends. It really depends on the specific nature of the ‘community’ or the ‘congregate setting’, and the quality of the support people in each. It is an oversimplification to call one situation ‘good’ and the other ‘bad’.
The guys at Juniper Hill are very attached to one another, yet also very different from each other; they share only limited interests. And they miss each other whenever they are apart. They are also attached to the 10 or so people who come regularly to visit or help out on the farm. They all like each other because they are wonderfully kind, interesting people, not because they are autistic. What right do we have, as a society, to tell them that they can’t live together just because they share a diagnosis?
At any rate, it has become evident that creating an independent living situation with as little assistance from the government as possible may be the most practical and sustainable path for the majority of families right now. With six guys living in close proximity here on the Hill, it borders on ‘congregate living’ in some eyes, and chances are we would have to argue this point if asking for government support for the project. Our original plan here on Juniper Hill….. to create a working farm that would provide employment and a meaningful day for a number of individuals…. has now evolved into a simple independent living situation where the people living here just rent their home and pay most of their bills with their social security checks. They are learning to work on a farm, and this work will at least provide them with their spending money, and hopefully more, eventually. It is a replicable model for many families…. and that was our goal.
We haven’t done any fundraising (yet) and the farm is not a licensed facility. However, these guys are lucky in that they do have some waiver funding that provides the support people that come in at an average of 15 hours a week for each guy. It’s not very much but it gets the shopping, laundry, cooking and cleaning done and leaves time for volunteer jobs and even some leisurely trips to the nearby University town and weekly stops at the local library. A couple of times a month, the AALIVE organization provides some amazing fun trips. And the guy’s social circle is continually growing, with friends dropping by to help out on the farm, just because they like being here. We recently registered as a host farm with WWOOF, an organization that links volunteers to working opportunities on farms. We see this as an excellent way to provide some of the supports for individuals who lack funding, while at the same time providing a valuable and enriching experience for volunteers. In just two weeks, we already have a local WWOOF volunteer coming weekly, and three more scheduled for long-term stays here.
So we think that we will just stay this size…. there is still so much room for growth in other ways, and that is enough. And we are really looking forward to sharing ideas and guiding other families through this process. Life is Good… here on the Hill!
To the Juniper Hill Gang – this post is amazing and it makes complete sense to many of us who care for loved ones with Autism. SPACE & CHOICE are tremendously important in the lives of all of us…… in Autism ..it’s a necessity. It is amazing what can be accomplished without involving “licensing” and “regulations” AMAZING!!
Thanks Colleen! and we hope you realize that you and AALIVE help make this work, for all of us!