Moving …. Teens ….Forward
Gillette Lifetime helps teens and young adults who have disabilities—and their families—make the move to adulthood
Jessica Day remembers turning 15 and thinking about what adulthood would bring.
“I had a lot of mixed feelings,” says Day, now a 21-year-old graphic designer. “As a teenager, you feel you’re invincible. But I had to accept that, for the rest of my life, I was going to be dealing with having a disability.”
Becky Nelson, social worker at Gillette Lifetime Specialty Healthcare, says concerns about adulthood are common—both for young people and for their families.
“Caregivers have told me, ‘It’s almost like when we got the diagnosis,’” she recalls. “Approaching adulthood is a second phase of having a disability, and families don’t know anything about it. They wonder, what happens after high school? What about work, living arrangements and relationship challenges?”
Fortunately, transition services at Gillette Children’s Specialty Healthcare and Gillette Lifetime can help.
“Dealing With Where I Was”
During her childhood, Day had multiple surgeries to address issues related to cerebral palsy. “It was all about going through those major procedures,” she remembers. “Then, at 15, it wasn’t about having procedures anymore. It was about dealing with where I was afterward.”
For every teen, changing from a pediatrician to a provider who sees adults is only one part of growing up. Other concerns involve continuing education or workplace choices, housing situations, legal matters and relationships.
“Transition is a process, not an event,” Nelson explains. “It’s not just handing off your health care to another doctor—it’s a philosophy of preparing for adulthood.”
Gillette’s philosophy includes introducing our patients to the topic of transition when patients turn 14. In adulthood, some patients might move to Gillette Lifetime for continuing specialty care; others might change to providers in their community. A fully accessible clinic located in St. Paul, Gillette Lifetime offers medical care, rehabilitation therapy, adapted equipment and other services tailored to adults with specific disabilities that began in childhood. When appropriate, the staff refers teens and families to community resources for legal, medical and other issues.
“Gillette Lifetime helped me through a lot of obstacles,” Day recalls. “I learned about subsidized housing and got connected to services like Metro Mobility. They have counselors to talk to. And even though I’m not planning on starting a family for a long time, I’ve talked to the doctors about it. It’s nice to know they’re there for you at different stages in life.”
One Thing at a Time
Although Day lives in her own apartment, not everyone can live independently or make life decisions without significant adult support. “That’s when we look at things like guardianship and supported living,” Nelson says. “We encourage independence or interdependence to the highest degree appropriate for someone’s level of ability. It’s a highly individual process.”
When she meets a new patient or family to discuss transition, Nelson about their most pressing concerns. Then she helps people determine what needs immediate attention and what can come later. “The key word I use is ‘we,’” she says. “I see families relax as they start to understand that they’ll have a partner in this journey, medical and otherwise.”
Day recommends Gillette as a place to begin looking toward adulthood. “In the long run,” she says, “they’re going to help you reach the goals you want to in life.”
Preparing for Adulthood: Getting Started
It’s never too early to begin developing a transition plan. Gillette offers these services—and more—for teens and young adults who have disabilities and for their family members:
- Phone and in-person consultations (to discuss legal, medical and independent living issues)
- Counseling sessions (to identify strengths and challenges, support decisions, and strengthen coping skills)
- Evaluations for independent living, computer access, and school or workplace accommodations
- Psychological and neuropsychological testing
- Help finding primary and specialty care providers who treat adults