By MIKE DEL ROSSO
When you hear the term “transition” in regards to working with people who have disabilities, what comes to mind? Is it a young girl in Thailand who is multiply disabled, who used the functional skills she learned in school to open a small laundry business in her village and support her family? Is it what the U.S. government describes as a “results-oriented process” that facilitates a child’s movement from school to the real world? Or is it a parent’s dream for what their child’s life will be like after they’re gone?
The answer is all of the above. Although none of these goals are possible without a plan.
Ultimately, transition is a mindset, a mantra, that parents and children who have disabilities must adopt into everyday life to create a vision for the future, experts say. A well-designed plan should map out each of the steps needed to take that child from school to independent life. Otherwise, when the child becomes an adult, he or she will have fewer options to live, work and enjoy life as he or she might choose.
“Transition is a journey,” said Perkins Superintendent of Educational Programs Dorinda Rife. “We believe transition starts at birth. Understanding where you’re going needs to be instilled in children and taught to parents very early on and must continue through all their years of education.”
The newly dedicated Patti and Mike Cataruzolo Independent Living Apartments on Perkins’ Watertown campus offer one of the latest opportunities for transition programming. As part of Perkins’ Expanded Core Curriculum, these largely unassisted living spaces provide students the opportunity to practice residential skills in a safe environment where they can make mistakes and learn from them. These apartments will also serve as the home base for the very first participants’ of Perkins’ Co-op Program, a new initiative launching this fall. Designed for young adults ages 18 to 22 who are blind or visually impaired and have completed their academic requirements, the Co-op Program offers a blend of vocational and independent living experiences to prepare these young adults for college or employment. Co-op participants will also work on resumes, experiment with assistive technology and develop new social networks at Perkins’ Grousbeck Center for Students & Technology.
“Kids not only need exposure; they need practice,” said Rife, adding that participating as an active member in society requires a lot more than merely academic education. “It’s not just about your head. It’s also about your hands.”
Daniel, 20, moved into the Cataruzolo Apartments this past spring to tackle the challenge of true independence. Before living in the on-campus apartments, he had never cleaned a whole bathroom before or mopped the kitchen floor.
“The Cataruzolo Apartments are probably the closest situation to what I’m going to be in when I graduate Perkins,” Daniel said. “I’m going to live in an apartment by myself. Now, when I actually do it, it won’t be totally new.”
Steve Perreault, Perkins International’s Coordinator for Latin American Projects, has a simple definition of the concept of transition: “Getting ready for life.” The formula for such transition success in Latin America, however, was anything but simple. As the dialogue around transition has grown in the last decade, Perreault found that, while they shared similar hopes for independence for people with disabilities, certain countries in Latin America had differing views on how to get there.
To help the countries get on the same page and work more progressively as a whole, Perkins International in 2009 convened with Fundación Once para América Latina (FOAL) from Spain and representatives – parents and professionals who had experience with transition – from Peru, Brazil, Uruguay, Costa Rica and Argentina. The result of this summit was a document entitled “Transition to Adult Life Process,” a universally agreed-upon concept paper that laid out clear steps and goals relating to transition and its critical nature to young people with disabilities.
“The document helped to develop a kind of agreement on the concept with our partner programs,” said Graciela Ferioli, Perkins’ regional coordinator in Argentina, who was integral in the drafting. “Today more Latin American countries are using the same concept and they’re starting to see that transition is not only related to work or to finding a job. Rather, it’s much more than that. It’s also learning how to spend your free time, how to plan recreation and how to engage in social activities.”
Since this creation of the “Transition to Adult Life Process” in Latin America, Argentina has celebrated the first government-funded group home for three women who are deafblind, a home that is specially adapted to encourage their independence. “It was a process at different levels,” Ferioli said. “Perkins International formed a coalition with the Government of Cordoba, Argentina, FOAL and local organizations to train professionals and work with the families. All of these separate parties brought something unique to the table – expertise, funding and more – and were able to coordinate based on this underlying concept of transition.”
Rupe Sosa, 30, is one of the home’s three residents. “Rupe has the right to be an independent person,” said her mother, Aurea Sosa. “But she cannot do it by herself; she needs services that can support her independent life.”
Rupe Sosa participates in activities within the Cordoba community while living with support staff and the two other women. In addition to practicing daily living skills, she stocks shelves at a local supermarket and enjoys leisure time at the hairdresser.
Sometimes Aurea Sosa dwells on the future when she herself will not be around, but she’s comforted to know that her daughter has her own place to live.
“Each country has the responsibility to uphold the rights of these people with disabilities and to support their families. If you give this population the possibility to lead an independent life, you are giving them dignity,” she said. “Any one of us could have a child with multiple disabilities or deafblindness. And anyone can incur these disabilities in their lifetime.”
The vice governor of Cordoba has already planned to establish new group homes based on Sosa’s successful model, which took four years of collaboration and rolled out in early 2012, Ferioli said. Possibilities include breaking up existing orphanages of 50 or more people into smaller homes for these children, many of whom have multiple disabilities, she added.
Back on Perkins’ Watertown campus, the life lessons that make up transition programming are very similar to those being taught in Latin America. Sighted people can automatically acquire the subtleties, or “soft skills,” of living an independent life through visual observation of their environment, said Rife. People who are blind or visually impaired – who don’t have the benefit of this incidental learning – must meticulously practice these skills.
Over the summer, the campus hosted a three-week independent living “boot camp” to encourage kids to develop the skills necessary to take care of themselves – “without the help of mom or dad,” said Rife – and a five-week program that exposed kids to the world of employment via the Cataruzolo Apartments and a work co-op. Within days of moving into the apartments, students were working entry-level jobs at such places as the Franklin Park Zoo and Mount Auburn Hospital.
“Soft skills” as related to the workplace include being able to dress appropriately, show up on time and understand proper etiquette. Kids who have developed these skills will not draw undue attention to themselves, since they know where they are in the scheme of things, Rife said.
Perreault would agree. “If you’re working at a Toyota dealership and everybody has break at 10:30,” he said, “and that’s when they have their cup of coffee, if you don’t know what to do in that time, your coworkers will perceive you as strange. That will more likely get you fired, even if you can put on a tire perfectly.”
Thus, added Rife, a well-rounded student will have the greatest chance at finding the right placement.
“There is a 70 percent unemployment or underemployment rate among people who are visually impaired or blind in the U.S.,” she said. “If we can change that rate even a little through efforts such as the Co-op and other programs, we will really be moving towards success.”
Internationally, the overall goal is the same, said Perreault. “We want governments to say, ‘How do you make a plan?’ So that when these people in whom you’ve invested an education become young adults, they don’t just go home and have nothing to do.”