All Illinois families of children with special healthcare needs are welcome to share their feedback and experiences at this virtual forum.

Join us for an opportunity to connect with other families and share your feedback on topics that matter to you. 

Our next Family Advisory Council (FAC) open forum is on Nov. 14 from 9 to 11 a.m. 

This free virtual meeting is for all Illinois families of children with special healthcare needs. You do not have to be a Division of Specialized Care for Children (DSCC) participant to attend. 

Visit our open forum event page for the link to join the meeting. Please note that live Spanish translation will be available during the open forum.

The FAC guides our efforts to strengthen teamwork, improve communication and empower families to have a voice in their children’s care. The council also connects families to resources and other families who are on a similar journey. 

Our FAC has played an important role in developing:

• Our new DSCC Family Portal to help families more easily communicate and share information with their DSCC care coordination team
• New “All About Me” Page templates to help providers, care coordination teams, schools and other caregivers understand the likes, strengths and needs of each child beyond their medical diagnosis
• A free, virtual Health Insurance Education Series to help families navigate the insurance maze and better understand their coverage and benefits
• Improvements to our family survey process, including reducing the number of surveys that families receive 
• Updates to our online Resource Directory and more

You can find the minutes from past meetings and more details on our website’s Family Advisory Council page.  

If you have questions or would like more details on how to participate in the FAC, please email dsccfac@uic.edu.

We hope to see you on Nov. 14!

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.

Acting allowed Izzy Gonzalez to break out of her shell and thrive while living with multiple disabilities

Izzy Gonzalez describes her childhood as “a storm” filled with severe illness, medical trauma and frightening diagnoses.

“As a child, I accepted that death was going to happen, and I just grew numb to that fact. I didn’t think I’d make it to high school,” recalled Izzy, now 20.

Izzy was born with VATER syndrome, a complex condition named for the body parts it affects:  vertebrae, anus, trachea, esophagus and renal (kidney).

Her condition meant frequent surgeries, hospitalizations and appointments throughout her childhood.

The isolation and uncertainty took a toll, especially as Izzy entered middle school. But when she accepted an invitation to join a local theater program for youth with disabilities, everything changed.

“I was in a tunnel for the longest time, but I found my light. Theater is my light,” Izzy said.

Today, Izzy is a college student studying theater and planning for a promising future.

She recently gave a moving speech detailing her journey with disability during “That’s What She Said 2024.” The event was a live storytelling performance featuring local women from the Champaign-Urbana community.

Izzy stood on stage during the Feb. 24 performance and read a letter to herself called “Love, Izzy.” In the letter, she speaks to her younger self at 10 years old. At that time, she was in a medically induced coma for 30 days due to a severe infection of influenza B.

“Even though you have been in and out of the hospital since birth, this is the toughest moment your body will ever face…” Izzy read aloud.

“I still feel in my heart the fear and doubt that we would never see a real sunset ever again. I’m here to tell you that you will wake up and you’ll see so many more sunsets. We made it a whole two decades, so much longer than we ever thought possible… In true Izzy fashion, we defy all the odds.”

You can watch Izzy read her powerful letter in full in the video below:

Fear, doubt and isolation

Izzy was born with no anus and only one kidney, which grew bigger to compensate for her kidney that didn’t develop. She also has scoliosis and is missing some of her vertebrae. Doctors initially told her family she’d never be able to walk.

Izzy was also born with a tracheoesophageal fistula (TEF), which meant there was an abnormal connection, or “tunnel” as Izzy calls it, between her esophagus and trachea (windpipe). She experienced frequent vomiting, acid reflux and difficulty breathing until her TEF was officially diagnosed at age 12.

Izzy’s family moved to central Illinois from California after her birth so she could receive treatment at Carle Foundation Hospital in Urbana.

She enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) in 2005.

DSCC helped coordinate Izzy’s medical appointments among many different specialists and arranged travel and hotel stays for her family.

Izzy underwent several major surgeries to correct her scoliosis and TEF, among others. She also experienced severe illnesses due to her weakened immune system.

“They knew my name in the pediatric ward and that was just the life I was living,” Izzy recalled.

This life meant Izzy missed many days of school, including all of sixth grade, due to medical reasons. The time away from her peers made it hard for Izzy to connect socially.

“I was gone from school so much, people in middle school thought I was a new kid,” Izzy said. “I was so much of an introvert because I didn’t know how to talk to anyone. I was that person who specifically chose to sit by myself at a lunch table at the back of a lunchroom.”

One day, Izzy’s mom asked if she’d like to try the Champaign Urbana Theatre Company’s Penguin Project.

The Penguin Project is a national program that provides a supportive environment for children with disabilities to explore their creative talents in a community theater experience. Youth with disabilities are the artists and “peer mentors” without disabilities join them on stage.

Not knowing what she was agreeing to, Izzy replied “yes.”

“I was bored with life so much that I was questioning my existence. I was questioning why I was here,” Izzy said, noting she had fallen into a deep depression and thought about self-harm.

Izzy felt she had nothing to lose.

“No limits”

The Penguin Project brought unexpected hope and unlocked a new passion and excitement within her.

“When I fell into The Penguin Project, I thought, ‘This is fun! I get to socialize with people and meet people like me,’” she said. “It’s an amazing program. You get to socialize with so many people that you wouldn’t have met otherwise, and that’s when I really found my people.”

Izzy was 12 when she joined The Penguin Project and has stayed involved with it ever since.

“Theater essentially saved my life and altered the course of my entire life. It altered the course of my future,” she said. “I got to enjoy life. I got to enjoy existing. I remember that first year, I was just enjoying being alive and that’s something I could never repay back in a million years. And that’s why I love The Penguin Project so much.”

Izzy started to act in other local theater productions. She calls being on stage and playing different characters a fun and freeing experience.

“In the theater, we get to be whatever we want. There are no limits,” she said.

Izzy received a nomination for a best up and coming actor award from the Champaign Urbana Theatre Company for her 2017 portrayal of Wally Webb in the play “Our Town.”

Izzy also participated in the Illinois Miss Amazing program. Miss Amazing provides opportunities for girls and women with disabilities to share their abilities and ambitions. In 2018, she became the Illinois Miss Amazing Junior Teen Queen.

As she prepared to graduate high school, Izzy knew she wanted to pursue theater in college.

She decided to attend Parkland College in Champaign, where she is studying theater arts and focusing on acting. Izzy recently completed her fourth semester and says she’s gained invaluable experience with the different theater production roles.

She hopes to eventually transfer to Millikin University in Decatur and earn her Bachelor of Fine Arts in theater. She also wants to become a makeup artist to help financially support her acting goals.

“A bright future”

Izzy currently lives at home with her parents due to her medical needs. She is working on becoming more independent so she can live on her own. After 19 years as a DSCC participant, she left the program in March 2024 as she prepares to receive adult services.

As she enters adulthood, Izzy enjoys raising awareness and advocating for people with disabilities.

She encourages other youth with disabilities and special healthcare needs to have fun as much as possible.

“That’s what always got me through my hospital stays. I had fun. I knew I was being watched medically, and I knew I was going through sicknesses, but I still had fun. I was still a child,” she said “And I’d say to the parents, make it fun for your child, just to take their minds off of what’s happening. Give them activities to do.”

Izzy also stresses the importance of a positive mindset.

“If you have a pessimistic mentality than nothing good is going to come of that, and you’ll just feel bad the entire time. If you have a more optimistic mentality, you’ll be able to cope better,” she said. “Always try to live in the moment, no matter what the situation is.”

As Izzy looks back on the “storm” of her childhood, she is thankful for the support she’s received along the way from her parents and her sister as well as DSCC.

She’s also incredibly proud of how far she’s come.

As she eloquently spoke to her 10-year-old self in her “Love, Izzy” letter: “One thing you’ll find out is the word ‘failure’ doesn’t seem to be in our medical vocabulary…” Izzy said.

“I can’t wait for you to experience everything that’s to come, and I can’t wait to experience what’s to come. I know that we will have a bright future.”