Transitions: A Parent’s First-hand Perspective on the Evolution of Transition Services
by Amy Lynn Smith
Editor’s Note: Having played a role in their creation, Lee Nasehi, CEO of VisionServe Alliance (VSA), reflects on how transition services have changed since her 40-year-old son was born.
When Lee Nasehi’s first child, Joe, was born prematurely in 1981, at just over 24 weeks and weighing one pound and 14 ounces, the doctors didn’t expect him to survive. But Joe came home from the Neonatal Intensive Care Unit (NICU) three months later, still a month before his due date, filling his parents with hope.
After a few weeks, however, Lee and her husband noticed Joe didn’t seem to be looking at them. Not long after, he was diagnosed with retinopathy of prematurity and is legally blind. Then they learned he not only has cerebral palsy but also some cognitive impairments due to brain hemorrhages.
“He’s a very social person and lots of fun,” says Lee, who today is president and CEO of VisionServe Alliance, a collective of organizations and individuals in North America working to create a better world with and for people with vision loss. “We went on to have three more children, and we included Joe in everything we’ve ever experienced as a family.”
After sending Joe to public school for a while, the Nasehi decided to try sending him to the Florida School for the Deaf and Blind when he was 11 years old. Although that meant Joe living away from home, Lee says he’s very adventurous and became more independent and happier because of the experience.
But this was still before transition services existed, although there was a movement toward them underway – which Lee and other parents across the country were an integral part of creating.
Joining forces to give children more opportunities
One burgeoning program was through a community-based organization that was then called the Center for Independence, Technology and Education (CITE). According to Lee, CITE had a forward-thinking Innovative Assistive Technology Resource Center, one of 13 charter programs across the country founded by Apple. Company leaders met with parents across the country, including Lee, to brainstorm the assistive technology required for kids with special needs, such as adaptive keyboards.
“Some of the companies in assistive technology that exist today were founded by this group of parents in their garages, when they were trying to figure out what their children needed,” Lee says. “We also spent two weeks at Harvard where Apple technologists picked our brains. Then we were expected to be volunteers at our charter sites, which we were.”
In 2000, Lee started working at Lighthouse Central Florida, where she met Karen Wolffe from the American Foundation for the Blind (AFB). Karen co-authored the Transition Tote System, which Lee calls the forerunner of transition services.
Lighthouse Central Florida began using this foundational curriculum, which was about more than devices, Lee says. It was about looking at the individual needs of each child to determine what they would need to graduate from high school with a real diploma, rather than simply a certificate of completion, which was the standard from public schools back then.
“Then we considered exploring going on to higher education,” Lee says. “What kind of work could this child grow up to do? Karen and our instructors, visual rehabilitation therapists, teachers of the visually impaired, Orientation & Mobility specialists and special education teachers came together to think about how we could create this program. And several other organizations in Florida wanted to do it, too.”
Making it official
A group of parents and advocates in Florida went on to create a legislative proposal for funding transition services, so that every Lighthouse or community-based program in Florida could offer the curriculum to their students – and it passed.
Not only did transition services in Florida come to encompass early intervention, they also now include wraparound services that complement other programs, including education at school. But the parents and advocates still wanted more, so they began pursuing transition services into higher education and work.
“We wanted to have kids thinking, ‘I am going to be an independent adult. I am going to take care of myself. I’m going to have to have a job or a career,’” Lee says. “My son never had that. We never expected to him to live fully independently, and because he’s cognitively impaired he may never understand the concept of work. But there might have been other children who were fully capable of being independent, who just didn’t grow up with those expectations.”
Opening the world to students with disabilities
According to Lee, transition services today explore work, give students the opportunity to have summer jobs and internships and to really start to think, “What do I want to do? What do I like to do?”
When the Workforce Innovation and Opportunity Act (W.I.O.A.) became law, it mandated the availability of such services. Lee says they’re offered in every metropolitan area and many rural areas, through local vocational rehabilitation agencies, a commission for the blind or similar organizations, depending on the state. What’s more, they’re available at no cost and they can guide students and parents in understanding how much is possible.
“Even when Joe was an infant, I didn’t know the things I could do to get him involved in activities like getting his own food and doing his own laundry,” Lee says. “He does some of that now, but he could be more independent even though I’m not sure he could hold a competitive job.”
Still, for many other students, the opportunities transition services provide can literally be life-changing. Lee says that one of the strongest pieces of evidence that transition programs work is that most children with disabilities now graduate with a high school diploma – which can lead them to more options for independence – rather than a certificate of completion. This, she adds, is due both to transition services and improved educational offerings in schools.
“Schools are stretched thin, as are community-based organizations,” Lee says. “But when they work together – as they do with transition services – students with disabilities can get closer to whole and the chance to maximize independence in their lives.” Additionally, FamilyConnect offer resources for families with children who have complex learning needs in addition to their visual impairment.
The APH ConnectCenter Transition Hub