Transition conference prepares youth with disabilities for adulthood

As a single parent raising a child with complex medical needs, Kristen Fisher says it’s easy to feel isolated.

The feeling subsided as she walked through the East Peoria Riverfront Conference Center and saw dozens of other parents and youth with similar needs.

“Seeing everyone at the conference and meeting other parents, it helps confirm that I’m not alone,” Fisher said.

The Illinois Statewide Transition Conference, titled “Stepping Stones of Transition,” returned for its 16th year Nov. 4-5 in East Peoria after a one-year absence due to the COVID-19 pandemic.

More than 660 families and professionals gathered in-person and virtually to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The University of Illinois Chicago’s Division of Specialized Care for Children is a conference sponsor and served on its steering committee. Part of DSCC’s mission includes connecting adolescents with special health care needs and their families to resources that prepare them for the transition to adulthood and adult services.

DSCC covered the conference-related expenses for 33 of its participant family members across the state.

Fisher is the mother of DSCC participant Connor Fisher, who will soon turn 15 years old. He was born prematurely with profound delays and a “smile that will melt your heart,” she said.

This year’s conference was Fisher’s first and she called the experience “phenomenal.”

“It’s hard to grasp that my baby is not a baby. He’s growing up. It’s a scary transition,” she said.

Fisher particularly enjoyed the breakout session “SSI, SSDI, HFS: Understanding the Alphabet Soup of Government Benefits.” She gained a better understanding of available government benefits and how they change over the lifetime.

Eighteen-year-old DSCC participant RJ Smith attended the conference with his mom, Karla. It was the first time attending for both.

Smith is a senior in high school who plays the baritone in his high school band. He wants to go to culinary school after graduation to become a baker.

He picked all the conference breakout sessions that he and his mom attended.

One of their favorites was about the Fast Track Transition Program through the Illinois Department of Human Services’ Division of Rehabilitation Services. The program provides pre-employment transition services to students with disabilities.

Smith said he is ready for more independence, and his mom said the session helped open her eyes to more options to help achieve that.

“I want to help him become more independent and push him toward that but not just leave him sitting the middle of the road, stranded,” Karla Smith said.  “(The conference) overall has been helpful.”

The conference consisted of informative breakout sessions in the areas of:

• Employment
• Education
• Community
• Health care

Nearly 40 DSCC staff members attended the conference in-person or virtually to network, learn from others and strengthen their skillsets and tools to serve our families.

DSCC also sponsored the conference’s health care track for providers who play a role in the transition from the pediatric to adult health care system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

DSCC transition specialist Darcy Contri said attending providers found helpful tips and information they will apply in their own practices and interactions with youth and families. These changes include:

• Starting the transition planning process sooner with patients and families.
• Making sure the youth and their family are included in all decision-making and planning.
• Keeping a holistic view of the patient and noting environmental barriers for their family.
• Emphasizing self-determination when working with youth and families on transition goals.
• Discussion of self-management strategies with youth and families.

Contri has been involved with planning the conference for the last 16 years.

“Every year it has been exciting to see the positive impact the transition conference has on improving outcomes for Illinois transition-age youth and their families,” she said.

Read more about the conference.