October 28, 2011
Two decades ago, autism was a mysterious condition known to relatively few. These days, media reports about Autism Spectrum Disorder (ASD) appear daily; it’s rare to find someone who doesn’t have a connection to the lifelong condition affecting between 1 million and 1.5 million Americans.
The children who were diagnosed with ASD in the 1990s have moved through the public school system legally obliged to educate them. For this aging population, focus is shifting from causation and treatment to long-term concerns. Where will they live? How will they find meaningful work? Who will care for them when their parents are gone?
While peers and siblings typically leave the family home to attend college or work, those options are often unrealistic for people with ASD. Finding meaningful employment is difficult. Housing options can include remaining at home or living in a group home or apartment with support. Opportunities for community interaction may become scarce once school programs end.
Years ago, Kathryn Nordberg began searching for housing and employment for her son, Erik, now 20. Discovering no options affording the quality of life she wanted for him, she assembled a team experienced with autism, business, hospitality, technology, law, and health care to develop an alternative for Erik and his peers.
Drawing upon her family’s 55 years of experience running an assisted living facility for some whose needs mirror those with ASD, Nordberg designed Erik’s Ranch and Retreats. There, young adults with moderate to high-functioning autism or Asperger’s will live and work together in a safe and supported environment that focuses on what they can do, rather than what they cannot, she said.
Established as a non-profit in 2007, Erik’s Ranch and Retreats is designed as a self-sustaining, destination-location model Nordberg hopes will be replicated worldwide (www.eriksranch.org). The vision is for two upscale properties featuring private apartments for adults with ASD and guest rooms for visitors and volunteers. Tapping into the growing “voluntourism” trend, residents will have the opportunity to earn money while they develop passions and skills by working with guests and volunteers who make a donation to stay on the property and commit to spending time with the residents.
Properties donated in Minnesota and Montana will be renovated once fundraising goals are achieved. In 2013, Nordberg plans to open an urban retreat in Edina that will be home to 35 residents who may work onsite in jobs typically available in the hospitality industry – personal concierge or sous chef, for instance. The 230-acre ranch near Bozeman will accommodate 48 individuals with ASD interested in Montana’s popular outdoor tourism opportunities.
Residents whose interests or skill sets are not compatible with onsite jobs may participate in the Experience Guide Program, which will be piloted this spring. The program will match individual interests with opportunities to engage with guests and to participate in the community at large. For example, a person who enjoys the theater or opera could be paid to lead a group of volunteers to a performance and backstage tour. While en route to the show, the guide would provide a briefing or history about the production and the performers. After the show, an opera singer or actor might meet with the tour participants, Nordberg explained.
For individuals who often struggle with social skills, spending time with visitors will produce reciprocal benefits. Volunteers will gain insight into people with ASD by teaching a class to them or working side-by-side in the kitchen or office or playing chess together. “My son isn’t verbal,” Nordberg says. “You can’t have a conversation with him over dinner.” However, he loves both people and horseback riding and could lead a trail ride with guests, she explained. That interaction is a win/win, as both Erik and his companions would have a meaningful, insightful social interaction.
Lifetime costs associated with ASD are more than $3 million – the majority incurred in adulthood, national autism organizations report. Erik’s Ranch residents will make a long-term commitment, choosing from two options. The first is for the family to purchase a lifetime membership for $325,000. If the member leaves within the first 10 years he can receive a pro-rated refund once a new resident takes his place.
The second alternative is to make a three-year commitment for about $40,000 per year. Three years is the minimum commitment, Nordberg said, because it will take time to develop and implement the resident’s life plan. Drawing upon the assisted living model that offers an array of a la carte services, Nordberg anticipates residents will also pay a monthly fee from income sources such as earnings and social security, depending on their needs.
“We are trying to make this a model that is easy for parents to access and fair to all residents,” Nordberg said. Efforts are under way to secure scholarships and financial aid options.
The Erik’s Ranch concept is a departure from the model in which people with disabilities spend their time at day treatment centers performing repetitive tasks such as sorting ties, Nordberg said. While her model will not be for everyone, “There have to be places in society where these folks care about what they are doing and thrive.” In addition to providing them with a desirable place to live, she said, “Erik’s Ranch will provide an avenue for these young people to showcase their skills and talents and to do what they love to do. Why shouldn’t they?”