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.

The 2024 Illinois Statewide Transition Conference is happening on Nov. 7-8 in Springfield

Luz Diaz said she struggled emotionally before attending the Illinois Statewide Transition Conference.

She felt isolated and unsure of the future for her daughter, Ariana, now 20. Ariana has cerebral palsy and quadriplegia along with hearing loss and developmental delays.

The knowledge she gained and the connections she made with other families during the 2023 conference immediately lifted her spirits. Luz now feels more hopeful for what lies ahead.

“Before I came here, I was depressed. I felt so lonely. Now that I’ve seen everything here, my thoughts have changed. I don’t feel lonely. I feel like I belong, and I feel like this is my family,” she said. “Now I feel like I’m not alone.”

The Diaz family were among 370 people who attended the 2023 transition conference in person in Bloomington-Normal.

The conference, titled “Stepping Stones of Transition,” returns for 2024 at the Crowne Plaza in Springfield, Ill., on Nov. 7-8. This year’s event is in person only.

The conference highlights opportunities and resources available for youth and young adults with disabilities and complex medical needs as they transition to adulthood. It’s a “one-stop shop” for gaining valuable resources, making connections and learning alongside individuals who are on the same journey.

The “Stepping Stones of Transition” conference is for youth, parents, caregivers, vocational specialists, healthcare providers, educators and others who work with youth and young adults with disabilities.

Youth and young adults can visit vendors, attend workshops and learn how to plan for their future, 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?

Highlights for 2024 will include learning about supported decision-making from keynote speaker and self-advocate Derek Heard along with Allison Cohen Hall from the Center on Youth Voice, Youth Choice.
You can also attend sessions on:

• Self-determination
• Advocacy
• Employment
• Future planning
• Post-secondary education
• Health care

The Division of Specialized Care for Children (DSCC) helps sponsor the transition conference and serves on its steering committee. We also can pay for the conference-related expenses for our participant families to attend.

DSCC paid the conference-related expenses for 25 DSCC participant families to attend the 2023 conference that took place in Bloomington-Normal.

“An Amazing Opportunity to Learn and Connect”

DSCC participant Vera Lynn Lindquist, 18, attended the transition conference both in 2022 and 2023. She has autism, attention-deficit hyperactivity disorder, anxiety disorder from childhood, tinnitus and hearing loss.

Vera enjoyed exploring the transition conference’s booths and sharing about the goals she has worked on.

“I know a lot more about autism awareness and speaking up and speaking out…” Vera said. “I’ve self-advocated at school. I reached out to my teacher on my laptop, I emailed him. I was behind on a lesson and let him know. He came and helped (me). It made all my teachers very happy.”

Vera attended the conference both years with her grandmother and legal guardian, Cheryl Calcese.

“We’ve used many of the independence and decision-making strategies we learned about,” Cheryl said. “Vera got a debit card. She has a money limit on it when she goes out for pizza and other group social events. She has an app on her phone to figure out the tax and tip. She adjusts everything according to her budget. She’s doing well with that and hasn’t gone over her budget once!”

The transition conference also gave Vera an opportunity to build her self-esteem and self-advocacy skills.

“She feels very comfortable at this conference, and it shows. She’s visiting with vendors and participating in sessions. Here her independence is shining. It’s very cool,” Cheryl said.

Cheryl also gained more resources and knowledge for herself.

“It’s always an amazing opportunity to learn and connect,” she said. “Thanks to the conference, I understand more about legal guardianship for adults and where to go for the paperwork for free or low-cost.”

Cheryl also learned more about the Americans with Disabilities Act (ADA).

“Vera and other students with disabilities had to miss their school homecoming,” she said. “In one of the sessions, I learned that the ADA covers social events. I connected with an organization that can help me make sure these students won’t miss their prom.”

Ariana’s mom, Luz, said she is grateful to everyone who organizes the conference so she can help give Ariana the best quality of life as she grows into adulthood.

Ariana’s father, Edgar, said he felt like the world was closing in on him before he attended the conference. By the end of last year’s event, he said he felt motivated after learning how conference speakers with disabilities advocated for themselves to have greater independence and a better quality of life.

Register and See the 2024 Schedule

The general public and professionals can visit the Statewide Transition Conference website to register and see more details.

For DSCC families, the conference schedule and more details are available:

• In English at: https://go.uic.edu/DSCC2024TransitionConferenceInfo
• In Spanish at: https://go.uic.edu/DSCC2024TransitionConferenceInfoSp

DSCC participants can register online:

• DSCC Transition Conference Sign-Up in English
• DSCC Transition Conference Sign-Up in Spanish

The deadline to register is Oct. 18. Please note that space is limited. Registration may close earlier if all spaces are filled.

Need financial help to attend?

If you are a DSCC participant family, we may be able to fund the conference-related expenses for your child and family, caregivers, nurse and/or personal attendant. These expenses include the cost of the hotel and transportation.

The Illinois Statewide Transition Conference Steering Committee has also set up a scholarship program to help youth with disabilities and their families attend the conference. The scholarship is open to:

• Individuals with disabilities
• Immediate family members of a person with a disability
• Guardians for a person with a disability

The amount of scholarship money available depends on each person’s needs.

Please fill out this scholarship form to apply. (The scholarship form is also available in Spanish.)

The deadline to apply for the conference scholarship is Oct. 18.

For more details or help with registration, please contact DSCC Title V Transition Specialist Claire Cook at (800) 322-3722, ext. 21812, or clairer3@uic.edu.

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:

• YAC flyer in English

• YAC flyer in Spanish

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.