Jordan's relationship with the AT Lab began early, as he helped demonstrate that young children can use assistive technology.
Watching Jordan grow
After a traumatic birth that he almost did not survive, Jordan Snell was revived and life-flighted to Salt Lake City. Later he went home with a feeding tube and low expectations. The doctors did not think he would ever walk or talk.
Sixteen years later the story is very different. He is an honors student who has competed on the National Academic League. He has a ham radio license. Though he now lives in Arizona, he still returns to the Center for Persons with Disabilities to work in the Assistive Technology Lab. He has cerebral palsy.
Jordan aspires to getting a doctorate in mechanical engineering. Already, people in his neighborhood come to him with their computer and fix-it problems.
"It's the best of everything that you hope for, to be able to have the outcome that he's had and to have the future that he's going to have," said Amy Henningsen, an occupational therapist at the Center for Persons with Disabilities. She credits the progress he has made to his own determination and to the early intervention he received from the time he was a baby. Henningsen began working with Jordan when he was two months old, as he entered the center's Up to 3 program, starting a relationship that has deepened with time.
For more about Jordan, read his featured story on the CPD website.
Brandi Dodds encourages doctors to foster young adult patients' independence in "Respecting the Young Adult Patient," a video segment on the DVD.
Youth with disabilities speak out on new DVD
A new toolkit brings the voices of young self-advocates into the discussion on how to become more independent.
The DVD and its accompanying guidebook, the Youth Leadership Toolkit, will provide training to families and to service providers who work with youth with disabilities, and most importantly, to young adults themselves.
"The biggest thing I hope somebody would gain from it is to understand that someone else has dealt with everything that they're dealing with," said Andrea Pitts, a young self-advocate who appears on the Youth Leadership Toolkit DVD.
Pitts is a member of the Becoming Leaders for Tomorrow project, which helps youth and young adults with disabilities transition into adulthood. The project is a collaboration between the Utah Parent Center and the Center for Persons with Disabilities, under the direction of Judith Holt and Sue Olsen.
BLT participants wanted to embed youth perspectives into existing training, said Jeff Sheen, training coordinator for the BLT project. The young advocates worked with partners from the Independent Living Research Utilization, the Center for Persons with Disabilities and seven other entities to produce the toolkit.
In the DVD, young self-advocates address topics like employment, independent living, relationships, self-advocacy and physical exercise. Pitts, who is now a graduate student, spoke about her experience learning to ride a bike. "I was probably 18 or 19 when I found out about the National Ability Center and the hand bikes," she said on the DVD. "It sounds simple but that was actually one of the most independent kind of situations I had because I was the one that found it, I was the one that implemented it, and then I was able to ride that sort of bike ... It's kind of like scratching it off the life list."
The message is that young people with disabilities can be leaders and advocates, not only for other youth with disabilities but for themselves. Too often, young adults don't know the best way to contribute to their own individual education plans, Sheen said.
"It's hard a lot of times when you have protective parents that want to do everything for you," said Chris Dodds, a young advocate who spoke on the DVD. "That kind of hinders your success in that area of advocating for yourself and being able to tell someone what you want."
The youth on the DVD acknowledge their parents' support but also express their plans to be as independent as they can.
The DVD can serve as a conversation-starter for some important discussions on growing up, Sheen said.