Rachel, 22, (right) graduated from the Secondary Program in 2012. “I have to admit that I started thinking about transition even before she went to Perkins,” said Rachel's mother. “I was a pretty proactive parent.”
By BILL WINTER
The clock starts ticking three years out.
That's when parents of Perkins students start feeling a real sense of urgency about planning for life after graduation.
Their child will turn 22 and "age out" of the educational system. They'll leave the cozy cocoon of Perkins and embark on their journey into adult life.
Parents, working with the Perkins transition team, must make a series of far-reaching decisions.
Where will their adult child live? What support services are needed? Where will the funding come from? Which state agencies will be involved? What jobs or volunteer activities will be available?
The transition process can be stressful, acknowledged Barbara Mason, education director of the Deafblind Program.
"There's a lot of pressure because huge lifechanging plans need to be made," she said. "An effective transition program is essential."
That's why Perkins starts early. Teachers incorporate transition planning in every student's Individual Education Program (IEP), a learning plan customized for each child. When students turn 14, classroom time is increasingly devoted to the daily living, vocational and social skills they'll need after they leave Perkins.
"Transition is not an event—it's a process," said Denise Fitzgerald, transition coordinator for the Secondary Program.
That's what Paula Belanger discovered when she planned her daughter's transition. Rachel, 22, graduated from the Secondary Program in 2012. "I have to admit that I started thinking about transition even before she went to Perkins," Belanger said. "I was a pretty proactive parent."
For Belanger, Rachel's transition involved two main challenges.
First, she had to find a residential facility that offered support for her daughter's disabilities. Rachel is "medically complex," she said, with progressive vision loss and a mild hearing impairment.
Second, she had to accept that it was time for her daughter to build a more independent life. For parents who have spent decades as fierce advocates for a child with disabilities, that can be difficult.
"I would encourage parents to be brave about that," Belanger said. "Part of helping our children grow up is helping them leave the nest."
After numerous visits to different facilities, Belanger found a group home where Rachel now lives with three roommates in a supportive environment.
Rachel also works 12 to 16 hours a week. As a volunteer, she reads to children in a preschool class. She has paying jobs assembling lens-cleaning packets at an eyeglasses factory and preparing boxes for a chocolate company.
"She just brought home her first W-2 form for me," Belanger said. "She was very proud!"
For Belanger, seeing Rachel make her own way in the world is the emotional reward for all the time and effort she invested in the transition process.
"It does my heart a lot of good to see Rachel being happy," she said. "I feel like Perkins helped prepare me for this whole process—to let her go more and more, and let her step out into her own life."
During her 20-plus years as transition coordinator for Perkins' Deafblind Program, Susan Summersby has helped parents plan transitions for countless students like Rachel. "Every student's transition is different," she said. But the goal is always the same: to develop a plan that allows the departing student to live as independently as possible, hold a meaningful paid or volunteer job, and have opportunities for learning, hobbies and socializing.
That means working closely with parents. "I try to empower them and give them tools," Summersby said. "I am kind of the glue that puts it all together."
There are no shortcuts, Mason said. "Without that investment of time, there is no guarantee that we'll find the best possible solution for each student."
Dave Power agrees. Four years ago, when making arrangements for his son, David, the transition experience was like "racing the clock," he said.
"People just underestimate how quickly that day comes upon you," he said. "There's a lot to learn."
Based on his experience, Power, who serves on the Perkins Board of Trustees, shared some tips for parents preparing for transition:
It takes two to three years "to understand what the options are, and to find the placements and funding that's going to make sense," he said.
Develop a specific idea of what you'd like your child's post-Perkins life to be like. "It's important to have that starting point," he said.
Investigate potential living arrangements for your child, and call state agencies. "Get a real picture of what your options are," Power urged.
Both the state and federal government have programs that support adults with disabilities. Figure out which ones are appropriate.
Reach out to other families that can share helpful advice. "We have a great resource in the (families of) graduates of Perkins," he said.
Power and his wife did have a clear vision for their son. They wanted David, now 26, to live in a "walk-around neighborhood" and have access to volunteer activities.
Power found a shared living apartment for David, and arranged for 15 to 25 hours of volunteer work every week. David delivers flowers, participates in recycling projects, cleans a church and works with an animal rescue group.
"It's worked out really well," Power said. "He's very engaged, he has a good, caring staff, and a program we have confidence in. I would say David is happy. And that's the end point."
Summersby is happy when she hears reports like this. She knows exactly how much planning and persistence goes into every transition success story.
"We've found a placement for every student who has left this department," she said. "It's a group effort by everybody. I'm very proud of that."
But Summersby's job isn't done. Parents of the next generation of students need help planning their child's life after Perkins. There is research to conduct and decisions to be made.
Time is short. The clock is always ticking.
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