One person’s idea of utopia can be someone else’s idea of a prison.
I was recently talking to a well-respected disability professional about the recent FRED conference to get people talking about creating new adult living opportunities at special needs farms and ranches, and musing how much Danny would enjoy being surrounded by friends 24/7, riding horses and helping out in some way when this professional got angry at the very concept. “I’ve spent my whole professional life trying to break down barriers for adults with developmental disabilities,” she said, “why would you want to put your son into a community that segregates people with disabilities?”
Other older parents who fought against the conventional wisdom of institutionalizing their young children with significant developmental disabilities often share this thinking. They had to fight the medical professionals and other authorities just to keep their child at home with the rest of the family and then later, fight even more battles to allow their children to attend public school, participate in camps and other social settings and be able to have a job. Why on earth would any parent even think about creating a living environment that wasn’t fully inclusive?
For me, I’d be absolutely delighted if Danny could eventually be part of a truly inclusive living situation if he were really accepted, and had a meaningful role to play, but given the reality of government funding levels and people’s willingness to spend extended time with someone who has significant challenges, I don’t see that happening any time soon.
I also know what won’t work for him. I don’t want him living alone with aides in an apartment just so we say he is living an “inclusive” life. I don’t want him home with us forever. It’s hard to visualize exactly where the best place would be for him and many of his teenage friends with similar needs.
What I do see, however, are parents coming together to create a whole new continuum of creative living arrangements. From the parents in Orange County who bought a hotel and are creating a dorm-like setting near the beach to the Golden Heart Ranch being developed, based on a model from the Netherlands, and looking forward, to the variety of innovative programs that will result from the Special Needs Study Mission to Israel this summer sponsored by the Los Angeles Jewish Federation. This Mission will include trips to various kibbutzim which have created wonderful new models that we visit, explore, and bring back to Los Angeles so that the hardest decision will be to chose between so many good options that strike a balance between the two poles of full inclusion and segregation.