Information Technology Support Associate Earns DSCC’s 2025 Award of Merit
DSCC honors Zack Alumbaugh for his outstanding customer service, collaboration and dedication to serving Illinois children and families
Information Technology Support Associate Zack Alumbaugh is the 2025 recipient of the Award of Merit from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).
The award recognizes exceptional DSCC employees for outstanding dedication and service to Illinois children with special healthcare needs and their families.
Zack joined the DSCC Information Technology (IT) team in 2020 and is based in our Central Administrative Office (CAO) in Springfield. His can-do attitude, dedication to resolving a wide range of IT challenges and kindness have made an impact in Springfield and beyond.
“Zack brings unwavering patience, creative problem-solving and genuine empathy to every interaction and challenge he faces,” DSCC Executive Director Thomas F. Jerkovitz said.
“His expertise and caring attitude have benefited every department at DSCC and given our team members the reliable support they need to best serve our participants. He understands the importance of DSCC’s mission and continually finds new opportunities to improve processes that, in turn, improve outcomes and services for families.”
Zack said he considers his role at DSCC to be much more than a job.
“What we do matters. We help participants and their families get access to assistance and care that makes a difference in their lives. DSCC is a shining example of the way a society can come together to care for each other and improve lives,” he said.
DSCC managers and colleagues nominated Zack for the award. They praise his outstanding contributions to the IT team, exceptional customer service and ability to resolve a wide range of technical issues with patience, professionalism and warmth.
“Zack skillfully bridges the gap between technology and the people who rely on it, demonstrating an extraordinary ability to anticipate needs and deliver clear, effective solutions. His remarkable capacity for communication has established him as a trusted resource across multiple departments, making him a linchpin in our organization,” said Andrew Nichols, Director of Information Systems, Security, and Compliance.
Whether the project is public-facing or behind the scenes, Assistant Director of Operations for Information Technology Greg Mayes says Zack’s combination of technical ability and exemplary customer service shines through.
“Zack’s incredibly intelligent with a great sense of humor and has a calming presence that puts everyone at ease,” Greg said.
Lombard Core Assistant Regional Manager Celestine Gatson couldn’t agree more.
“Zack’s work always, always, always exemplifies our mission. He’s always willing to be helpful,” Celestine said.
IT Training and Development Specialist Lynda Miller appreciates the many ways Zack “pours his heart into his work.”
“He never gives up on tough issues. He always follows through, and staff tell me how much they appreciate his support and his kindness,” Lynda continued. “Zack exemplifies our mission by collaborating with others, offering dependable support and building strong, trusting relationships across the team.”
Zack also enjoys spreading awareness about DSCC’s programs. He has supported key community outreach events, including the annual Illinois Statewide Transition Conference and the Sensory Station at the Illinois State Fair.
“At events, like the transition conference or other in-person meetings, he is quick to help and understands the importance of the work we do at DSCC. He works hard to ensure that things run smoothly and is willing to help in any way possible to ensure that everyone has a great experience,” said Benefits Management and Data Analytics Manager Brittani Provost.
Springfield and St. Clair Assistant Regional Manager Kathy Thomas praises Zack’s ability to get to the root of an issue and see it through.
“I have also seen him help at the Illinois State Fair. He gets out and talks with the families, playing games with the kids. It is great to see him out there promoting DSCC,” she said.
Zack joined DSCC at the encouragement of his mother, Stephanie Alumbaugh. Stephanie has worked at DSCC for over 20 years and received the Award of Merit herself in 2011 through UIC.
Zack calls this honor a “full-circle moment” for his family. He says he couldn’t be more thankful for the opportunity to work at DSCC and “get to do stuff with tech every day.”
“I really enjoy getting to help people and maybe teaching them a little bit about how the computer works. It’s just really satisfying for me,” Zack added.
Zack also appreciates how DSCC supports his continued growth and professional development. He’s currently pursuing his master’s degree in Management Information Systems.
Zack says he’s proud to play a role in supporting DSCC participants and their families.
“Knowing what DSCC does…even if you’re having a rough day professionally, that really puts everything in perspective,” Zack said. “I don’t know what else somebody could ask for in a job. We get to help people every day.”
Learn more about Zack and his impact on DSCC in this short video:
DSCC staff nominated a total of 11 of their colleagues for this year’s Award of Merit. As the winner, Zack will receive a memento, a $2,500 award and recognition from the Executive Director.
Congratulations to all of our outstanding 2025 DSCC Award of Merit Nominees:
- Shanna Berg, Customer Service Specialist
- Deanna Deleshe, Core Regional Manager
- Cheryl Golliher, Core Care Coordinator
- Rebecca Grzeslo, Core Program Coordinator Assistant
- Andrea Hoskinson, Assistant Director of Operations Finance, Accounting, and Procurement
- Darlene Jones, Home Care Quality Improvement Specialist
- Beth Niemerg, Core Care Coordinator
- Haley Phelps, Interim Relief Program Manager
- Tiffany Riddle, Core Enrollment Specialist
- Rita Storck, HC Care Coordinator
See photos of the 2025 nominees in our 2025 Award of Merit luncheon photo album on Facebook.
Create Holiday Magic with Inclusive Fun for Everyone!
Celebrate the holidays with our list of inclusive, sensory-friendly events happening across Illinois.
The holiday season is a time for joy, connection and shared traditions. For individuals with sensory sensitivities, medical complexities and other disabilities, typical celebrations may not always feel comfortable or accessible.
Every family deserves the chance to enjoy the season in ways that support their children and loved ones’ needs and allow for meaningful moments together.
We’ve gathered a list of inclusive and sensory-friendly holiday events happening throughout Illinois. These activities can help you experience the magic of the season at a pace and environment that works best for your family.
There are sensitive Santa opportunities, Mr. and Mrs. Deaf Claus, light displays, low-sensory celebrations, accessible theater performances and other welcoming events for children and adults with special healthcare needs.
You can check out our Special Events page for the full roundup of activities. Just like Santa’s list, be sure to check it at least twice as we continue to add events!
Please note that the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in the organization or scheduling of these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.
Featured Events
- The Secret Sleigh Project coordinates volunteers to provide in-home Santa visits to children who are medically fragile nationwide. See our Secret Sleigh event listing for more details on how to request a visit.
- Autism Speaks and Cherry Hill Programs will provide free sensory-friendly Santa experiences at multiple shopping centers in Illinois on Dec. 7. You must sign up to attend. Photo packages will be available to buy.
See our Santa Cares listing for more details. Be sure to select “Santa Cares”, “Caring Santa”, or “Sensitive Santa” when checking your location. Event dates and times may vary. Please check your mall location to confirm your date and time. - Enjoy a movie on the big screen with the lights up, lower sound and the freedom to get up, dance, walk, shout or sing. Visit the following sites to find more details and a theater near you:
- Looking for holiday light displays to walk, wheel, or drive through? Maybe a parade, cookie walk or festival is more your style? Check out the websites and listings below to help plan your holiday adventures (note that some events may not be sensory-friendly):
Chicago and Northern Illinois
Check out WTTW’s list of holiday light displays and experiences. Kidlist also offers a huge list of Chicagoland drive-through and walk-through displays to help you get into the holiday spirit.
Other Chicagoland sensory-friendly activities include:
- Sensory-Friendly ZooLights at Lincoln Park Zoo and Sensory-Friendly Holiday Magic at Brookfield Zoo
- Special Kids Day Visit With Santa in Elmhurst
- Sensory-Friendly Holiday Express at Blackberry Farm in Aurora
- Breakfast with Mr. and Mrs. Deaf Santa Claus for Children With Hearing Loss in Chicago/ Desayuno con el Sr. y la Sra. Santa Claus Sordos
- “Abilities Team Winter Party” in Plainfield
- “Photos with Santa” for Children With Autism and Developmental Disabilities in Machesney Park
- Sensory-Friendly Winter Lights at Central Park in Oak Brook
- Winter Wonderland Celebration at the DSCC Mokena Regional Office
Central Illinois
Inclusive holiday parties are happening in central Illinois, such as:
- Cookies at the Clearinghouse/Evento Anual de Galletas en el Clearinghouse in Champaign
- Sensory Hour Sweets With Santa in Monticello
- “Special Time With Santa” in Taylorville
- Inclusive Holiday Dance in Springfield
- Lincoln Land Down Syndrome Society Christmas Party in Springfield
For more ideas, check out Chambanamoms.com’s roundup of holiday season fun for families and Visit Springfield.
Southern Illinois
There are many hometown holiday parades, concerts and festivals throughout the area. You can check Southern Illinois Families (SI Families) and Southernmost Illinois for lists of events.
Inclusive activities include:
- Sensitive Santa Event for Children With Autism and Other Sensory Differences in Marion
- St. Louis Zoo Wild Lights Sensory-Friendly Night
- Christmas Open House with Santa in Benton
- Santa at the Center in Effingham
- “Milk and Cookies with Santa” for All Ages and Abilities in St. Louis – Chesterfield
Have an Event to Share?
If you know of an inclusive or sensory-friendly event to include in our list, please email us at dscc@uic.edu.
Resources to Recharge
The hustle of the holiday season can feel overwhelming.
There are resources available if you need to step back and take a deep breath.
You can search our website for support groups and helpful webinars. On Dec. 11, the “How to Keep from Kicking Santa Claus – Tips for Managing Holiday Stress” webinar will feature practical tips for relieving stress, preventing meltdowns and strategies for creating your own fun.
Our Caregiver Mental Health Toolkit is also a great resource during the holidays and beyond.
Happy Holidays!
Honor National Family Caregivers Month by Caring for Yourself
We’ve developed resources to help you support your mental health, reduce stress and connect with others who understand.
November is National Family Caregivers Month, a time to recognize and celebrate the incredible dedication of families caring for children and youth with special healthcare needs.
At the Division of Specialized Care for Children (DSCC), we know that caregiving can be both a rewarding and challenging journey.
As you care for others, it’s just as important to take care of your own mental health.
Find Support in Our Caregiver Mental Health Toolkit
Our Caregiver Mental Health Toolkit can help you find the support and strategies you need to recharge and stay well.
This online resource offers practical tips, self-care strategies and mental health resources to help you navigate the unique demands of caregiving while prioritizing your own health and well-being.
The Caregiver Mental Health Toolkit includes:
- Stress management strategies and techniques to help you cope with tough times.
- Self-care tips and practical ways to nurture your own physical, emotional and mental health.
- Mental health support resources to connect you with professional help and support networks when needed.
- Apps, online tools, videos and podcasts you can access anytime.
We created this toolkit with input from our Family Advisory Council, which shared the importance of mental health support for caregivers like you.
Whether you’re a parent caring for a child, a family member supporting a loved one or anyone in a caregiving role, we encourage you to explore this free resource.
Connect With a Fellow Caregiver for Support
One of the most powerful supports you can have is a connection with another parent who truly understands.
We have a Home Care Family Outreach Associate on our team who understands the unique challenges of caring for a loved one with complex medical conditions firsthand.
Our Home Care Family Outreach Associate works to create a community for caregivers within DSCC and offer heartfelt support, connection and empowerment.
You can ask your DSCC care coordination team to refer you to the HCFOA. You can also email a request to speak with the HCFOA at DSCC-FamilySupport@uic.edu.
Learn more about Erica Stearns, our current HCFOA, on our Home Care Family Outreach page and in the short video below:
Take a Break with Caregiver Coloring Sheets
We’ve also designed four coloring pages to help caregivers relax and take time to relieve stress and practice mindfulness.
There are four designs available in both English and Spanish:
- Lighthouse (Lighthouse in Spanish)
- Sunflowers (Sunflowers in Spanish)
- Hot air balloons (Hot air balloons in Spanish)
- Gears and clock (Gears and clock in Spanish)
These printable pages are a simple way to pause, relax and focus on yourself.
More Mental Health Resources and Support
You can find more mental health resources in our online Resource Directory.
Be sure to also follow our DSCC Facebook page and Instagram page for helpful reminders and tips throughout the rest of the month.
Your DSCC care coordination team is also here to support you. They can listen, help identify your needs and find available services and resources.
As the heart of your child’s care team, we celebrate you this month and always!
DSCC is on Instagram!
Join us as we grow our online community to share resources, family stories and more.
The Division of Specialized Care for Children (DSCC) is now on Instagram!
Follow @UICDSCC to stay connected and find:
- Helpful resources and tips for navigating care and services
- Family stories that celebrate our participants’ strength and unique experiences
- Upcoming events and learning opportunities
- Encouragement and inspiration from families and DSCC team members across the state
Our Instagram page is another way we’re working to keep you informed, supported and connected to the information and resources you need.
We can’t wait to see you there!
Seeking Teens and Young Adults for Our Youth Advisory Council
The council is a great opportunity to share your voice and help improve transition support for youth across Illinois.
Calling all teens and young adults with special healthcare needs in Illinois!
Would you like to make a difference? Your voice can help shape programs and services for youth like you across the state.
We are looking for new members to join our Youth Advisory Council (YAC).
The YAC is an opportunity to share your feedback and help improve planning for the transition to adulthood. You can also strengthen your leadership skills and connect with other youth.
As a YAC member, you can:
- Learn about and help improve how the transition to adulthood works for Illinois youth with special healthcare needs
- Help us gain a better understanding of your and your peers’ transition needs
- Give a voice to what matters most to you
- Gain valuable leadership and advocacy experience
- Expand your network
The council is open to all Illinois youth ages 15 to 24 with special healthcare needs.
You do not need to be a Division of Specialized Care for Children (DSCC) participant to join.
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.
Your perspective matters!
Free Virtual Training Program on Caring for Children With Complex Medical Needs at Home
DSCC is proud to sponsor the expanded eHomeCare program to help families and home nurses improve their care knowledge and refresh their skills
We are excited to help expand a free online training program on how to care for children with complex medical needs at home.
Research shows that the number of children in need of medically complex care at home is steadily growing. With this growth, there is an urgent need for current and accessible educational resources to ensure the quality and safety of care for these children.
We’ve also heard from families and home nurses that they need a way to expand their knowledge about care in the home and refresh their skills.
The Division of Specialized Care for Children (DSCC) is proud to sponsor the expanded eHomeCare program to help meet this need and equip caregivers with the tools and knowledge necessary to provide high-quality care.
The eHomeCare program provides comprehensive, evidence-based information on the care of children with complex medical needs at home. The training is for:
- Family members and caregivers of children with complex medical needs
- Nurses working in home-based environments
- Physicians
- Respiratory therapists
- Students from health professions
- Anyone interested in learning more about caring for children with complex medical needs.
The eHomeCare program consists of eight on-demand courses to enhance the knowledge, skills and confidence of home care providers in the following areas:
- Caring for children with a tracheostomy with or without a ventilator
- Central line care
- Dialysis in home
- Infection control
- Setting boundaries in the home
- Skin care
- Range of motion
- Daily care activities for children
The courses aim to bridge knowledge gaps and enhance caregivers’ confidence and competence in managing both routine and emergency situations.
Please note that the completion of these training courses alone is not enough to demonstrate proficiency in skills that require specialized care (such as caring for a trach, ventilator or central line). If you are interested in becoming trained to provide these cares, please talk to your child’s medical team or home nursing agency.
Parents, extended family members, caregivers and others can use these modules to learn and refresh different skills for caring for their medically complex child in the home setting.
To learn more about the courses and enroll, visit the eHomeCare Online Training Program website.
After participating in the eHomeCare courses, individuals will be able to:
- Describe best practices for providing care and managing common issues for children requiring complex medical care at home.
- Recognize signs and symptoms of complications and determine appropriate responses when caring for children requiring complex medical care at home.
- Demonstrate enhanced confidence and competence in providing care for children requiring complex medical care at home.
- Collaborate effectively with healthcare team members to provide comprehensive and coordinated care for children requiring complex medical care at home.
Free continuing education credits are available.
If you have trouble enrolling in the course or need help, please email help@icep.wisc.edu.
The eHomeCare Program originally started as one course focused on trach and vent care through a partnership of several Wisconsin-based nursing schools and hospitals.
DSCC provided funding and collaboration to expand the eHomeCare training program in response to family feedback on the need for more education and training on caring for children with complex medical needs at home.
We partnered with the Illinois Department of Healthcare and Family Services (HFS) and the federal Centers for Medicare and Medicaid Services (CMS) to fund the project.
DSCC team members worked with eHomeCare developer Dr. Kim Whitmore and her team at Ujima United to add more courses to the training in collaboration with the Interprofessional Continuing Education Partnership at the University of Wisconsin-Madison.
We hope the expanded eHomeCare training modules will be a valuable resource for families, caregivers and everyone involved in their children’s complex care at home.
Webinar Series to Help Families, Caregivers and Youth Navigate the Transition to Adulthood
Learn practical strategies and tools to plan for the transition to adulthood during our free two-part series
Families can face new challenges and shifting roles as young people move toward adulthood.
Join the Division of Specialized Care for Children (DSCC) to learn more about navigating this journey during our free “Preparing for Adulthood: A Roadmap for the Future” webinar series.
The two-part series will feature Claire Cook, DSCC Title V Transition Specialist, and Suzanne Aaron, Northern Illinois Outreach Specialist for Illinois Life Span.
The sessions will cover:
- “Session One: Navigating Adult Systems,” June 26 at 6 p.m.
This session is for youth ages 12 to 15 and their families. Families with children at other developmental stages are also welcome to attend.
This session will provide practical tools for exploring and understanding adult systems, such as health care, education, employment and more. It will also cover strategies for balancing independence and guidance as family roles evolve.
- “Session Two: Empowering Parents and Caregivers,” July 31 at 6 p.m.
Session two is for parents, caregivers and families of youth ages 16 and older with complex needs and/or disabilities.
Building on session one, participants will dive deeper into adult guardianship, health insurance, benefits and programs for youth with complex needs. The session will focus on creating meaningful daily routines while managing evolving family dynamics. It will also explore the role of support circles and how to make decisions that support youth and caregivers in the long run.
- “Primera sesión: Recorrer los sistemas de los adultos,” 26 de junio a las 6 p. m.
Esta sesión es para padres, cuidadores, familias y jóvenes de 12 a 15 años. Las familias de jóvenes en otras etapas de desarrollo también son bienvenidas.
- “Segunda sesión: Empoderar a los padres y cuidadores,” 31 de julio a las 6 p.m.
Según la primera sesión, este seminario web se centrará en tutela de adultos, seguro médico, beneficios y programas para jóvenes con necesidades complejas, crear rutinas diarias importantes mientras se maneja la dinámica familiar en evolución y la función de los círculos de apoyo y cómo tomar decisiones que apoyen a los jóvenes y a los cuidadores a largo plazo. Esta sesión ofrecerá a las familias conocimientos y estrategias adaptadas a sus retos únicos.
Each presentation will be in English. Live Spanish interpretation will be available.
The recordings and slides for both sessions will be available on our Family Education Webinars page.
If you have questions about the series, please contact Claire Cook at clairer3@uic.edu or (800) 322-3722.
Please spread the word and plan to join us!
Rate Increase for In-Home Nurses Now Approved
HFS has received the necessary federal approval for the Jan. 1, 2025, rate increase to take effect.
We have an important update on the rate increase for in-home nurses originally set to take effect on Jan. 1, 2025.
The Illinois Department of Healthcare and Family Services (HFS) has received the necessary federal approvals for the rate increase to take effect.
You will see the updated rates reflected on your next Prior Authorization for In-Home Shift Nursing letter (also known as the 2352).
The rate increase affects:
- Registered nurse (RN), licensed practical nurse (LPN) and certified nursing assistant (CNA) care
- In-home and facility-based respite care
- Nurse training rates
The increased rates are:
- RN, $57.78 per hour
- LPN, $48.15 per hour
- CNA, $32.10 per hour
You can find the updated rate table on our website’s Home Care Rate Table page.
The Division of Specialized Care for Children (DSCC) will begin paying nursing agencies the newly approved rate when our new CarePay claims software system goes live. We currently expect to launch CarePay in mid-May.
We are communicating with our enrolled home nursing agencies about this update as well.
After we transition to CarePay, DSCC will work with home nursing agencies to adjust payments for nursing services dating back to Jan. 1.
If you have any questions, please reach out to your DSCC Care Coordinator. We are here to help!
Share Your Input and Connect at Our Family Advisory Council Open Forum on May 8
We invite all Illinois families of children with special healthcare needs 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 May 8 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.
You can sign up on Zoom 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 also played an important role in developing:
- Our DSCC Family Portal to help families more easily communicate and share information with their DSCC care coordination team
- NurseNet, a digital platform that connects Illinois families needing nursing care with local home health agencies
- “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
- Our 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.
You can also visit our Family Stories page to learn about some of the family members who serve on the council:
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 May 8!
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 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.