Annual Illinois Statewide Transition Conference Maps Out Routes to Adulthood
The Annual Illinois Statewide Transition Conference provides valuable opportunities and resources to help youth and young adults with disabilities navigate the transition to adulthood.
Turning 18 is a major milestone. For Brenton Braxton and his family, they approached it with a mix of excitement and many questions about the future.
What benefits can Brenton qualify for as an adult? What should they know about guardianship and power of attorney?
Brenton has Duchenne muscular dystrophy, a genetic disorder that causes his muscles to weaken over time.
“When Brenton was first diagnosed when he was 7, these things that are being presented to us now – at that time, we had no idea that we’d be able to be at this place. So, that’s why my word I keep using is a sense of excitement because… Brenton’s still thriving,” his mom, Veneise, said.
Brenton is now a senior in high school with a strong interest in sports and a desire to go to college and “live life to the fullest.”
To help Brenton and his family prepare for what’s next, their Division of Specialized Care for Children (DSCC) Care Coordinator recommended they attend the Illinois Statewide Transition Conference.
The annual event provides valuable resources and information to help youth with disabilities and their families navigate the transition to adulthood.
“One of the major reasons why we wanted to attend this conference is that we wanted to get in the room with the resources. We wanted to get to the people, talk to the people, engage with the people that can say, ‘Hey, here’s what your child qualifies for. Hey, try this program for him, do this, go down this avenue,'” Veneise said.
“You just really want to have your feet grounded in knowing what’s getting ready to happen.”
The Braxtons were among nearly 450 people who attended the 19th Illinois Statewide Transition Conference, titled “Stepping Stones of Transition,” on Nov 7-8, 2024, at the Crowne Plaza Hotel and Convention Center in Springfield.
The transition conference brings together youth with disabilities, parents, caregivers, vocational professionals, healthcare professionals, educators and more,
Youth with disabilities and their families can network and find answers to common questions about the transition to adulthood, including:
- What happens after I leave high school?
- How do I sort through the maze of resources?
- What steps can I take now to prepare for upcoming changes?
- What skills are important for me to develop?
“Here we all are in one space.”
DSCC Home Care Family Outreach Associate Erica Stearns describes the annual conference as “a dream come true.”
Erica is the parent of two children enrolled with DSCC. Erica also has lived experience as an individual with disabilities.
“I was talking to another adult with disabilities before this interview, and it dawned on me, I didn’t grow up having this,” she said.
“To have an event where everyone is coming together for a similar purpose related to our children and their disabilities is incredibly meaningful, and it’s unique in that here we all are in one space.”
Erica highlighted the importance of ensuring youth and young adults have access to the information and resources they need as they transition to adulthood.
“It is abundantly clear that while we know that there are certain steps and certain paths that individuals with disabilities can take as they navigate their entry into adulthood, the information to prepare both their families and themselves for that is very challenging to find,” she said.
“I think most families feel empowered with knowledge. And I think that’s what this conference provides families is information, knowledge, tools and resources.”
DSCC helps sponsor the conference and serves on its steering committee. DSCC also provides financial support to help participant families attend the conference.
Claire Cook is DSCC’s Title V Transition Specialist and co-chair of the Transition Conference’s Steering Committee.
“Several families came back from last year,” said Claire. “We had about 20 or so individual families from DSCC, five of which were primarily Spanish speaking and several of our transition-age youth.”
“A lot of opportunities, a lot of information.”
Jani, 14, attended the conference with his mom, Aimee, and sister, Grace.
Jani has spinal muscular atrophy (SMA). He first enrolled with DSCC when he was diagnosed with SMA, close to 12 years ago.
Jani described the conference as a positive experience with valuable information. He and his family gained resources, discovered new opportunities and made connections.
“We had a very nice family that was sitting by us (at lunch), whose son had a similar disability. It was just nice to talk to them and hear their story,” Jani said.
When asked if he would recommend the conference to other young adults, he said, “You should definitely come because it has a lot of opportunities, a lot of information. It’s just good to come to understand what’s going to happen, what they want to do later in life.”
After high school, Jani plans to go to college and become a teacher.
“I want her to be strong, and I want her to be confident.”
TaLeah, 17, attended the conference with her mom, Tamara. TaLeah first enrolled with DSCC 15 years ago, when she was diagnosed with hearing loss.
She is an accomplished basketball player who plans to go to college, play basketball and be successful.
“I want her to be strong, and I want her to be confident,” said Tamara.
“I want her to continue to advocate for herself and others. And I think she’s doing a good job thus far.”
Tamara said she is trying to give her daughter the best tools and equip her the best way she knows how.
“All this information is very helpful and hopefully it’ll help build her up.”
Brenton Braxton said the resources and knowledge his family gained at the conference will help him achieve his goals.
“I think some things from here that I learned is that not only I’ll still have my independence, but I can also use my parents to help me in my journey and to living it to the fullest and doing all the things I want to do,” he said.
On turning 18, he said, “It’s a big step, but I feel like with the support from my family and people around me, it’ll be good.”
Save the Date for the 2025 Transition Conference
The 2025 Illinois Statewide Transition Conference will take place Oct. 30-31 at the Crowne Plaza Hotel and Convention Center in Springfield.
To learn more about how to support youth with special healthcare needs during the transition to adulthood, contact DSCC at (800) 322-3722 or visit dscc.uic.edu.
For more information about the Transition Conference, visit www.illinoistransitionconference.org/.
Check out our Facebook page to see a photo album with more photos from the 2024 Transition Conference.
New Youth Advisory Council for Teens and Young Adults With Special Healthcare Needs
An opportunity for youth to help improve transition support and make a difference!
Youth with special healthcare needs should have a big role in shaping their future and helping improve support for others.
We want to hear from teens and young adults about what’s important and helpful to them as they plan for the future. Our new Youth Advisory Council is a great opportunity for them to share their input and make a difference.
The Youth Advisory Council (YAC) is a diverse, youth-driven group that aims to develop more youth-focused ways to help individuals and families with transition planning, resources and services.
The YAC’s goal is to support positive outcomes in adulthood for all Illinois youth with special healthcare needs in the areas of:
- Employment
- Health care
- Independence
- Quality of life
The YAC’s role is to:
- Bring a different and personal perspective on issues important to youth.
- Partner with the Division of Specialized Care for Children (DSCC) to help develop more youth-focused methods to enhance care coordination.
- Develop strategies to improve communication between youth/young adults and older adults.
Members participate in four virtual meetings per year.
Who is Eligible to Join the YAC?
The YAC is open to youth with special healthcare needs who are:
- Ages 15 to 24
- Living in Illinois
- Planning for the transition to adulthood in the areas of education, health care, employment and home and community-based support
Youth do not have to be a DSCC participant to join the council.
How to Join and Learn More
Members must complete an online application to join. (The application is also available in Spanish.)
Visit our Youth Advisory Council page for more information and answers to frequently asked questions.
You can also see the YAC flyer for more details:
If you have questions, please contact Claire Cook, DSCC’s Title V Program Transition Specialist, at clairer3@uic.edu or (800) 322-3722, ext. 21812.