Looking Toward Our Kids’ Futures Without Fear

Q: What inspired you to start researching alternative living communities?

I’ve been thinking about this for years. One of the first things you do as the parent of a child with disabilities is try to get over the shock: you go through the process of grieving and get to the point where you’re able to figure out how to go about living and supporting your child as best you can. My husband and I got through the grief, and then we took a few years to try to get out of a place of post-traumatic stress because our son spent much of his first three years in the hospital fighting for his life. Luckily, he is much stronger now and rarely has reason to be in-patient. And, now that he is in the fourth grade, the reality of adulthood is becoming more apparent.

Recently, we began looking at our Special Needs Trust again with a friend who’s very in tune with what it takes to raise a child with disabilities, so we’ve been thinking about emotional implications, and what the structure of our kids’ lives will look like on a daily basis. Putting documentation, videos, and letters into place for our children and those who will be supporting them — to really help others understand how we would like our children to be taken care of — is so important. How do we document what we know? How do we project our vision for today onto their futures? These are today’s wants and needs; this is the team, the vision, the hopes and dreams — but what are the long-term goals, and what do they look like for our kids?

So I started thinking: there’s got to be something more fulfilling for our son and the people who will work with him and his peers — more than a residential facility or group home, where residents work on crafts and so on. There’s got to be a place that gives people a more fulfilling experience. Then I saw a presentation about Els Joncs in Spain and Botton Village in the UK. It really spoke to me. What struck me about the project in particular was the testimony from a man who has been with the organization for twenty years. He lives in the community and raised his children there, and says it was the best thing that ever happened to him and his family. He came from a Communist country in the Eastern bloc, where people with disabilities were hidden away in facilities. He found Botton Village and learned English from its residents, and it helped him see how ridiculous it is that people with disabilities live the way they do where he’s from. He’s been so fulfilled by this inclusive community: seeing it grow, helping it grow, raising his family there.

Q: Can you share more details that inspired you about the communities you’ve found?

The idea behind a lot of these communities is to find out what the residents are passionate about — to allow them to be part of a society that gives them options to do what they love. To be involved in actually creating something. Many people are fulfilled by the jobs that they do; why can’t people with disabilities also be fulfilled by the same sense of accomplishment? It’s person-centered; the focus should be on what is important for each individual, not how we are going to take care of them. How are we going to enrich their lives and allow them to enrich the lives of other people, and vice-versa?

The vision for The Village, which will open soon in the Beverly Hills area, is to place it in the middle of the city so residents are integrated into the community. They’re not in a rural area; instead, the residents will live above businesses they can patronize and possibly work in. It’s one way of thinking about all the variations of inclusivity. What does inclusivity mean, and where does it happen? What is most appropriate for each individual? Some people prefer rural environments and some prefer cities, so it’s a good thing for us as parents to think about now: which environment would be better for our kids?

Rose van Wier Hein, who founded Golden Heart Ranch, was inspired by a community where her second cousin resides: a Camphill location in the Netherlands. She bought twenty or so acres in Calabasas, and by the time her son was sixteen, she received her letter of determination for her nonprofit. These things take a lot of time. She’s been working on Golden Heart Ranch for over twelve years; her son is twenth-seven now. They do hold camps there, but as of now, it’s not yet functioning as a living community.

Q: What are some big-picture questions that have come up as you’re doing this research?

One of the trickiest things to figure out is how to make these models sustainable. Models like Botton Village do this by creating and selling products — but how do you ensure that the support staff will stay and become a real part of the community? People should not feel they have to take a big pay cut or accept that working with people with disabilities means they will have a low-paying job for the rest of their life. We don’t value caretaking in this country — how do we change that mindset?

I find the model for The Village inspiring; it made me think about the fact that when someone builds a rental property now, they must reserve a certain percentage for low-income residents — why not also require that they reserve a certain percentage for people with disabilities? Why couldn’t we decide that if we build five apartment buildings next to each other, we reserve five apartments in each building for residents with disabilities, and their units are accessible and built for that support and purpose?

As our kids get closer and closer to adolescence, I think that many of us are not imagining choices. We need to be able to think about having options for our kids, and not be in complete fear of what’s going to happen to them. If we can get to the point where we can shift our own mindsets, and then shift the mindset of the community at large, I hope we’ll be able to make a difference. I hope that the work we’re all doing as parents now will help the next generation be treated more respectfully and inclusively.

Parents, we’d love to know: Are you also considering the benefits of communities like these? What interests and passions developed for you alongside your child?