Utah UCEDD Program Trains Self-Advocates on Transition
Reprinted with permission of
ADD Update, March 2009
Justin Olsen, BLT Advisory Committee
page 7
When children with disabilities enter the public school system, the law guarantees them the right to an education. When those children become adults, the rules change completely. It becomes their responsibility to prove eligibility for services, and to coordinate services from unrelated agencies.
The Becoming Leaders for Tomorrow project exists to make this transition easier. Advised by a nine-member committee that includes young adults with disabilities, the project is aimed at training both young adults in transition and the professionals who serve them. More than half of the committee members are people with disabilities from the Logan and Salt Lake City, Utah areas. The project is staffed by representatives from the Center for Persons with Disabilities on the Utah State University campus, under the direction of Judith Holt. Utah Family Voices and the Bureau of Children with Special Health Care Needs in the Utah Department of Health. Funded by the Administration on Developmental Disabilities, it began in October 2007 and will run until 2010. Information generated from the project is being posted on two websites: http://blt.cpd.usu.edu/Contact.html and www.medhomeportal.org.
The young adults who lead the advisory committee set the agendas and run the meetings. After the program trains young adults on effective leadership and self-advocacy skills, it will encourage its young advocates to train their peers on how to navigate agencies and services including Medicaid, Social Security, higher education and vocational rehabilitation.
The group will target people on the Utah Division of Services for People with Disabilities' waiting list and teach them leadership and self-advocacy skills. From there, they can learn to coordinate their own services.
The idea is to help young people with disabilities reach their goals, said Brandi Doddds, a member of the advisory committee. "I'm really excited about what we're doing. ... I think the training is going to be cool."
Justin Olson, another member of the BLT advisory committee, said mentoring could have helped him better understand issues surrounding work, Medicaid and Social Security. Like many members of the BLT project, Dodds and Olsen started out as a member of the Center for Persons with Disabilities' Youth Advisory Committee, which advised community medical professionals statewide.
That group produced a DVD presentation: an eight-minute educational clip on making the transition from pediatric to adult care. In Respecting the Young Adult Patient, Dodds said young adults can be encouraged to make their own appointments, call in their prescriptions, keep track of taking them and be responsible for refilling them. "That could be just one category that these people can be independent and learn to take care of themselves."
Justin Olson, another presenter, said it is important for health care professionals to talk directly to the young adults they are treating. He spoke of his own frustration when he visited an emergency room, and the doctor and nurse spoke not to him, but to his friends who brought him.
"They made their point so succinctly and so powerfully," said Jeff Sheen, the panel's moderator and a BLT project coordinator. The panel discussion was edited down to eight minutes, made into a DVD and posted on YouTube, where it got few hits until it was presented at the Association of University Centers on Disabilities conference in November 2007. In the months following the conference the number of hits rose to 1200, and calls and emails started coming in from people and pediatricians around the country.
A common theme that runs through the work of the BLT project is: Plan ahead. Whether the young adult is dealing with education, employment, medical or social issues, the project is targeting the 14 to 22 age bracket, urging youth with disabilities and their families to start preparing for the adult world before being thrust into it.
