Chapel Haven: A Gateway to Independent Living for Adults with Different Learning Styles and Special Needs
By Mariah Klair Castillo
(L-R) Diana Bilezikian & Michael Storz
There are very few places in the world that are as safe and welcoming to adults with learning differences as Chapel Haven. On a recent visit by publisher Dr. Pola Rosen and assistant editor Mariah Castillo, it was clear that Chapel Haven offers great support services for adults on the autism spectrum and developmental and social disabilities. It is also one of the six programs awarded by the Advancing Futures for Adults with Autism (AFAA) in 2013 for being one of the best and most innovative practices for adults with autism. The program is the first of its kind, offering adults with learning disabilities the skills they need to live independently and to advocate for themselves. It remains a pioneer in these areas.
The idea of independence and self-advocacy can be seen in the program’s history. The residence was opened in 1972 by Jerry Rossman and Sydney Krauss as the Maplebrook Parent Association. According to Dr. John Bilezikian, Chair of the Board of Directors, it was the young adults themselves who decided to name the program Chapel Haven; partly because Chapel Street in New Haven is the original site of the program. Originally, while the co-founders believed that it was necessary for these adults to learn how to live independently, ultimately was expected that they would return home to their parents. “They didn’t expect their kids to say, ‘Wait a minute, we’re doing great here. We want to stay in New Haven,’” added Catherine Sullivan-DeCarlo, the Vice President of Admissions. In fact, about 85 percent of the adults who have graduated from the program live independently, in the surrounding New Haven community, with reliable public transportation and great social atmosphere. Having achieved the goal of independent living, they don’t return “home” but make their new home in and around the Chapel Haven environment; an ideal arrangement for continuing the goal of independent living.
For their first two years at Chapel Haven, adults live on campus as part of Chapel Haven’s residential program. There, adults follow a curriculum to meet over 200 objectives that cover various skills that Chapel Haven deems necessary to live independently. While the adults may learn these skills in a classroom setting, they are also assessed in real-life settings. “What differentiates us from many programs out there,” said Michael Storz, President of Chapel Haven, “is that we believe that in order to truly learn independent skills, to not be dependent on this campus hub, your classrooms need to be held in authentic settings which include apartment settings, community settings, recreation, and employment. Assessments are held in all of these settings. If someone is doing well in the school setting which has structure, but not in the apartment setting, for example, we can add more structure to the apartment setting.
Many residents, in addition to mastering skills for independent living, have also gone to get their high school, IEP, and college diplomas. These students register for classes at the various community colleges in the area, including Gateway Community College and Southern Connecticut State University. The students can use Chapel Haven’s blended subject requirements to gain their diplomas.
After the initial two-year program, Chapel Haven students are assessed on how well they’ve mastered the skills. Those who are able to live independently, with support from Chapel Haven, find employment and a place to live. Those who are not yet ready to live independently, even with support from Chapel Haven, are eligible for an extra year of services through a residential Chapel Haven program called “Bridge.” Those in need of more extensive support move into another residential Chapel Haven program called “SAIL”.
Chapel Haven also has a program for young adults with Asperger’s syndrome, a residentially-based 2-year program that provides an individualized core curriculum focused on Social Communicative Competencies. Chapel Haven also features a satellite campus, ‘Chapel Haven West’ in Tucson, Arizona.
Most of the graduates of Chapel Haven are able to live independent lives and find employment. Some have gone to be very successful in their various fields. In a first for Chapel Haven, Diana Bilezikian, the daughter of Dr. John Bilezikian, has written a book, called Dear Diana: Diana’s Guide to Independent Living- for Adolescents and Young Adults with Different Learning Styles and Special Needs. The book was a sell-out at a recent conference! A few graduates, including Chris Murray, David Hogin and Vito Bonanno have become successful artists. Storz listed various graduates who have obtained impressive positions in a variety of business settings. Bilezikian emphasized, “Chapel Haven does more than help its young adults find employment. It gives them the assurance that they are needed.”
For example, his daughter wasn’t feeling well one morning and was advised by her parents to stay home. Diana said to her parents, “Mom and Dad, I have to go to work. They need me!”
It’s not just the members of the Chapel Haven community who recognize the talents of the residents; organizations, schools, and even the state of Connecticut have seen the amazing range of talent. This recognition has allowed Chapel Haven to set up over 40 collaborations with an array of programs and employment opportunities that fit best the talents of these special young adults. The most recent collaboration is called UArts Chapel Haven, a unique artisan studio program funded by a grant from the Connecticut Office of the Arts. This program pairs Chapel Haven’s artists with local artists. They then create and sell high quality products such as scarves, bags, and greeting cards. The opening of this first state non-profit collaboration took place recently in January.
Situated in New Haven, Chapel Haven has benefited from partnerships with Yale University. For example, the university is conducting research with the residents to test the effectiveness of the Chapel Haven model. According to Storz, the research thus far shows that there is “significant” progress on social cognition, as adults on the autism spectrum are responding more like neurotypical individuals. While this doesn’t mean that the adults are being cured of their disabilities, the study, which will be finished in 2018, so far shows that Chapel Haven has a program that works for many. Storz would also like to use the data to improve the program for those who aren’t showing as much improvement. The point, though, is not to transform these young adults into someone who they are not. Rather, the goal of Chapel Haven is to deal with the differences that impair their ability to be fully integrated into the everyday traffic of life in such a way that they are effective, functioning members of the regular world.
When asked about what they envision Chapel Haven to be like in the future, both Storz and Bilezikian had big goals in mind. Storz said, “We’ve been in existence for 42 years now. We have adults that have been living in our community for over 35 years. They have mastered and are proficient at living on their own, but now they’re aging. So now there are senior and medical concerns that are becoming new obstacles for these individuals.
“There are very few, if any, programs for these individuals to retire to, so what’s happening is that many of our adults are being moved into nursing homes with people 20 to 30 years older than them in very restrictive environments, often far from the community they have known for so long.
“The immediate response is that Chapel Haven is developing its own assisted living program, so that adults who choose to live their lives in the place that they call home will have that opportunity. Chapel Haven, thus, plans to expand its mission to lifelong programming, where their adults can begin here, learn independent living skills, become active employed members of the environment at large, and as they age in place, take advantage of whatever additional living structure will be required. This is no different from the lifeline of most adults without special needs.”
Overall, Storz said: “There is a huge need for transitional programs in adult services, whether they are day options, clinical services, or employment services, so I can see the Chapel Haven model being replicated in various parts of the country to help fulfill the need.”
Bilezikian adds, “We’re going to need many more Chapel Havens. I think we are uniquely situated. We are pioneers. This model really works. Will we continue to be the best at what we do? I hope we will.”#
