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.

Learn more about the MFTD, DRS and DDD Medicaid waivers and how they can help your family

Our annual Health Insurance Education Series returns in March to help families understand important health insurance topics.

In response to family feedback, our 2025 series will explain Medicaid Home and Community-Based Services Waiver Programs for Illinois.

The webinars are open to Division of Specialized Care for Children (DSCC) participants, their family members and anyone interested in these topics.

These free virtual trainings will feature DSCC team members and other presenters covering a different waiver each month:

• Medically Fragile and Technology Dependent (MFTD) Medicaid Waiver, March 11 at 6 p.m.
  • The March presentation will focus on the Medically Fragile and Technology Dependent Waiver for children and adults. Presenters from DSCC will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
  • See the MFTD Medicaid Waiver flyer
  • Register on Zoom for MFTD Medicaid Waiver

• Division of Rehabilitation Services (DRS) Medicaid Waivers, April 8 at 6 p.m.
  • The April presentation will focus on the different waivers available for children and young adults through the Division of Rehabilitation Services (DRS). Presenters from DRS will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
  • See the DRS Medicaid Waivers flyer
  • Register on Zoom for DRS Medicaid Waivers
• Division of Developmental Disabilities (DDD) Medicaid Waivers, May 13 at 6 p.m.
  • The May presentation will focus on the different waivers for children and young adults available through the Division of Developmental Disabilities (DDD). Presenters from DDD will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
  • See the DDD Medicaid Waivers flyer
  • Register on Zoom for DDD Medicaid Waivers
• La Excepción de Medicaid para personas médicamente frágiles y dependientes de la tecnología (MFTD), 11 de marzo, a las 6 p.m.
  • La presentación de marzo se centrará en la excepción para personas médicamente frágiles y dependientes de la tecnología para niños y adultos. Los presentadores de la División de Atención Especializada para Niños (DSCC) le explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
  • Consulte el folleto de Beneficios de MFTD para obtener más detalles.
  • Registrarse para MFTD en Zoom.
• Excepciones de Medicaid de la División de Servicios de Rehabilitación (DRS), 8 de abril a las 6 p.m.
  • La presentación de abril se centrará en las diferentes excepciones disponibles para niños y adultos jóvenes a través de la División de Servicios de Rehabilitación (DRS). Los presentadores de DRS explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
  • Consulte el folleto de Excepciones de Medicaid de la DRS para obtener más detalles.
  • Registrarse para Excepciones de Medicaid de la DRS en Zoom.

• Excepciones de Medicaid de la División de Discapacidades del Desarrollo (DDD), 13 de mayo a las 6 p.m.
  • La presentación de mayo se centrará en las diferentes excepciones para niños y adultos jóvenes disponibles a través de la División de Discapacidades del Desarrollo (DDD). Los presentadores de DDD explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
  • Consulte el folleto de Excepciones de Medicaid de la DDD para obtener más detalles.
  • Registrarse para Excepciones de Medicaid de la DDD en Zoom.

You can also:

• Download a flyer with all Health Insurance Education Series topics and registration links. (The flyer is also available in Spanish.)
• See details about each series session on our Events page.
• Watch the session recordings and access related materials anytime on our Family Education Webinars page.

Our Health Insurance Education Series began in response to questions and suggestions from our Family Advisory Council.

If you have questions about these webinars before or after a session, please email dscc@uic.edu or call (800) 322-3722.

Our annual family survey is an easy way to share your input and help improve our services.

Attention participant families, be sure to watch your mail or email!

On Feb. 10, all Division of Specialized Care for Children (DSCC) participants will receive our annual family survey.

This survey asks how well our team members support your family and meet your needs. It also asks about:

• Your contact preferences
• How and when you’d like to meet with our team
• How well our staff communicates with you

You will receive this survey by email or mail, based on your preferences. If you respond, you could win one of five $50 Amazon gift cards.*

Your responses will help us strengthen your services. They also guide updates to our DSCC policies and procedures that affect your family.

Our surveys are optional, but we strongly encourage you to share your experiences. We want to ensure we’re doing all we can to help you meet your family’s needs and achieve your goals.

* Please note: Foreign national nonresident aliens are not eligible for the gift card participation prize.

How Your Feedback Makes a Difference

Your ideas and feedback help improve our services to families like yours. We used family input from last year’s survey to:

• Train our care coordination teams to better understand the family perspective and tailor services to your unique needs and wants. 
• Educate families about the benefits of our DSCC Family Portal to easily communicate and share information with your care coordination team.
• Launch NurseNet, a new online tool to help families connect with available in-home nurses.
• Offer free webinars on important health insurance topics affecting families.
• Improve our language access to better support our families’ diverse backgrounds.
• Reorganize our Chicago offices to better serve the Chicago community.

Please be on the lookout for our annual survey on Feb. 10.

If you have questions or need more information, please contact your Care Coordinator.

We appreciate your partnership and look forward to hearing from you!

Miss Amazing is a national nonprofit program that encourages girls and women with disabilities to consider their goals, challenge themselves and take pride in who they are.

The Illinois Miss Amazing experience brings together a diverse group of participants to build friendships, build self-confidence and practice key self-advocacy skills in a fun environment.

The 2025 Illinois Miss Amazing program is accepting applications for participants through Jan. 25.

The program is also accepting application for volunteers who want to help and share in the experience.

The 2025 Illinois Miss Amazing Amplify event is on Feb. 22 at Center Stage Theater in Naperville.

Participation is open to girls and women ages 5 and older who have:

• An Individualized Education Program (IEP) or Individualized Program Plan (IPP)
• A 504 Plan
• Supplemental Security Income (SSI)
• A physician’s records proving disability

Amplify event activities will include:

• Show rehearsal
• Interviewing
• Passion presentation
• Hair, makeup and more

Are you ready to share your passion and shine?

Illinois Miss Amazing will accept applications until Jan. 25 or when all spots fill up.

Volunteers with and without disabilities can also lend a hand on and off the stage. Visit the Illinois Miss Amazing website to apply as a volunteer or learn more about volunteer options.

You can also read about our former participant, Izzy Gonzalez, an Illinois Miss Amazing alum pursuing a career in theater.

Families have until Jan. 30, 2025, to share their input on a state plan amendment allowing CNAs to become paid family caregivers.

Families can now share their feedback to allow more parents/legally responsible adults (LRAs) to become paid caregivers for their children at home.

The public comment period is currently open for a state plan amendment allowing parents/LRAs to become paid caregivers if they are a certified nursing assistant (CNA) and employed by a nursing agency.

Currently, parents/LRAs are paid for providing skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. This rule applies to parents/LRAs of all children approved for Home Care Program services, regardless of the child’s age.

Allowing parents and caregivers who are CNAs to become paid caregivers is an important step in strengthening support for families of individuals who need in-home shift nursing.

This change requires an amendment to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver). It also requires the creation of a new state plan amendment. Both approvals must be in place to allow for this change.

The public comment period for the new state plan amendment is now open until Jan. 30. You can read the public comment notice for the state plan amendment on the Illinois Department of Healthcare and Family Services (HFS) website.

Here is how you can review the amendment and share your feedback.

Review the Amendment

• Visit the HFS website to download and/or print a copy of the proposed state plan amendment.
• Email HFS.BPPC@illinois.gov to request a digital copy of the proposed state plan amendment.
  
• Review a hard copy of the proposed state plan amendment at HFS’ offices at:
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
  • 401 S. Clinton
    Chicago, IL 60607
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
  • 401 S. Clinton
    Chicago, IL 60607

Share Your Feedback

HFS is accepting public input on the proposed state plan amendment through Jan. 30, 2025.

You can share your feedback in two ways:

• Email your input to HFS.BPPC@illinois.gov.
• Mail your written input to the Illinois Department of Healthcare and Family Services, Attention: Bureau of Program and Policy Coordination, 201 South Grand Ave. E., 2nd floor, Springfield, IL 62763

This public comment process is one of the best ways you can make your voice heard.

Next Steps

In addition to the new state plan amendment, we have worked closely with HFS to incorporate this new rule into the MFTD waiver. This waiver amendment is currently under federal review for approval.

There is currently no set timeline for the state plan amendment and the MFTD waiver amendment to be approved.

Once approved, we will notify our Division of Specialized Care for Children (DSCC) participant families as quickly as possible.

If you have any questions, please contact your DSCC Care Coordinator at (800) 322-3722. 

Experience the magic of the season with Santa visits, light displays and other fun events happening throughout Illinois.

The holiday season is a time for joy, connection and celebration. For individuals with sensory sensitivities and other disabilities, traditional festivities can sometimes feel overwhelming.

We’ve gathered a list of inclusive and sensory-friendly holiday events happening throughout Illinois to help families celebrate the season.

There are light displays, sensitive Santa opportunities, parades and more going on throughout Illinois.

Our Special Events page includes a roundup of opportunities designed specifically for youth with disabilities and special healthcare needs.

We hope this collection of events will help spark ideas to create your own holiday magic:

• 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. 8. You must sign up to attend. Photo packages will be available to buy. Visit the Santa Cares website for a complete list of Santa’s stops. Be sure to select “Santa Cares”, “Caring Santa” or “Sensitive Santa” when checking your location. (Note some event dates and times may vary. Please check your location to confirm your date and time.)
• The National Federation of the Blind is offering letters from Santa and winter celebration letters in Braille to children who are blind or have low vision. The program is for children 10 years old and younger. Please complete the letter request form by Dec. 16. Letters are available in English or Spanish. If you have any questions, call (410) 659-9314, ext. 2236, or email education@nfb.org.
• 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:
  • AMC and the Autism Society’s Sensory Friendly Films
  • Reel Movies for Real Needs
  • Studio Movie Grill
• For families in the Chicago area, Chicago Parent magazine has a roundup of sensory-friendly Chicagoland events as a list of free holiday activities for Chicagoland families. Activities include:
  
  • Illumination: Tree Lights at Morton Arboretum
  • Special Kids Day Visit With Santa in Elmhurst
  • Holiday Express at Blackberry Farm
  • Sensory-Friendly Performance of A Christmas Carol at the Goodman Theatre.
• In central Illinois, enjoy time with Santa at the sensory-friendly “Meet and Greet with Santa” in Springfield or the “Sensory Hour Sweets with Santa” at the Allerton Mansion in Monticello. The Illinois Times family event calendar and Chambanamoms.com website also provide lists of events, parades, light displays and more in and around the Springfield and Champaign-Urbana areas.
• Southern Illinois residents can find many fun seasonal activities on SI Families’ event calendar. It’s packed with ideas including the:
  • Very Merry Marion Parade
  • Christmas Open House with Santa at the Benton Public Library
  • Lights Fantastic Parade in Carbondale
• St. Louis events include Breakfast with Signing Santa and Milk & Cookies with Santa in St. Louis – Chesterfield.
• The animals at zoos throughout Illinois are celebrating the season, too! Check out Sensory Night at St. Louis Zoo Wild Lights, ZooLights at Lincoln Park Zoo or contact your local zoo to find out what’s happening and when.

Be sure to check our Special Events page often as we add more holiday activities to the list. If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Happy Holidays!

Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in the organizing or scheduling of these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

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 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing provided education and connection to 27 Illinois families.

Marcellus Weldon and his daughter, Mariana, were born with the same rare genetic disorder called Treacher Collins syndrome.

It affects the development of the head and face, including the ears.

“We don’t have any ear canal or any ear at all, on both sides. So, we’re profound to moderate deaf. It just happens at birth,” Marcellus explained.

He uses the analogy of a car to describe living with their disabilities.

“Growing up, I was the passenger, and my mother was the driver because she also has the same condition as me,” he said.

“Now that I’m the parent, I’m the driver and Mariana is the passenger. And we have to go through hills, valleys, twists and turns together. And there’s going to be things that I just can’t do with her.”

The desire to give Mariana, 6, the knowledge and tools necessary to be her own “driver” led the Weldon family to the 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

The Institute is a free, annual program for parents and caregivers of children ages 6 and under who have an identified hearing loss. It focuses on helping families find answers, build connections and access resources all in one place.

During the four-day program, Marcellus watched Mariana bond with other children. He also learned more about his family’s type of hearing loss, education options and how to best support Mariana through school and beyond.

“It’s nice for me to see her thrive not only academically but socially, and she’s just been blossoming like no other. And that’s a beautiful thing to see,” he said.

“She has a community. She has somewhere to go,” Marcellus continued. “She has resources that I never had — someone to fill up her tank, using that analogy.”

The Weldons were among 27 families from all over Illinois who attended this year’s Institute from June 13-16 on the Illinois School for the Deaf (ISD) campus in Jacksonville.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors.

“Parent Institute for me is exactly the soul and the heart of what DSCC’s mission is. You have our mission statement as partnering, helping and connecting. And this program is the epitome of what that is,” said Violet Wiker, DSCC’s Family Liaison who helps families enroll and prepare for the Institute.

Continue reading and watch the recap video below to for powerful parent and staff testimonials from the 2024 Institute:

Expert advice and guidance

The Institute provides valuable education and networking for children with hearing loss, their parents/caregivers and their siblings.

Participating parents and caregivers attend daily lectures by experts in the field to learn about raising a child with hearing loss. They also meet in small groups with professionals to discuss specific concerns and connect with other caregivers.

“They go through classes, they have educational experiences, they get to make friends that are people that are living their journeys and then interacting with the professionals that can give them great advice and guidance and expertise on how to go forward from here,” Violet said.

The children with hearing loss attend classrooms with experienced teachers of children who are deaf or hard of hearing. They play with one another and often develop deep friendships.

Each child also has the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations.

“All of those are these amazing comprehensive reports that (families) can take with them out into their communities where they need those reports and those recommendations,” Violet said.

Siblings also attend and stay with their families in the ISD dorms. The siblings have their own teachers and take part in fun recreational activities.

“No one ever leaves disappointed and without fail, by the time we depart at the end after the graduation ceremony, people are always very grateful, glad that they came and they have taken away a lot of knowledge and information,” said Angela Kuhn. Angela is an ISD administrator who serves as the director for the Institute.

“They have really a connection with the staff here at the School for the Deaf and DSCC employees that lasts for a lifetime.”

“We understand each other”

Mayra Villarreal attended the Institute looking for knowledge, community and others who would understand her family’s situation.

Mayra’s daughter, Miliani “Mili” Carmona, 6, has a rare genetic mutation that causes progressive hearing loss. It also causes retinitis pigmentosa, a condition that affects the eyes and leads to gradual vision loss, as well as seizures and other neurological problems.

The Institute helped Mayra understand how Mili perceives the world.

“The first thing that really hit a ‘wow’ moment for me was when we were doing the educational part about the hearing impairment, and they played that hearing loss simulation video. And hearing where she was, it was just surreal because you don’t really get it. You could try all you want to understand what your child’s going through, but you don’t get it unless you’re in it…” she said.

“It broke my heart. But it also made me understand her more… and see why things have been so hard for her.”

Mayra also found understanding for herself from both the Institute staff – many of whom have hearing loss themselves or are related to someone with hearing loss – and the other families.

“Everybody’s connected in some sort of way, and that’s why I feel like everybody here has such a passion for it,” Mayra said. “I’m lucky enough to take back these relationships that I have built with these parents because we might not be on the same journey, but we understand each other.”

Parent Megan Andresen and her 5-year-old son, Victor, are both deaf from Waardenburg syndrome.

“Coming into this I wanted to learn about my son’s behavior. Then I learned about implants and cued speech and different things, and it really opened my eyes.,” she said.

“The thing I think I’ll take away is as parents, whether we’re deaf or hearing, we have that same commonality because we do have deaf children, and it’s not different people in different groups,” she continued.

“It’s everybody really together, all coming here for the betterment of their children and to learn about their children.”

Sarah Dupuis’ daughter, Kimberly Pham, is 5 and was born with Down syndrome and mild to moderate hearing loss. As a special needs parent, Sarah said the opportunity to relate with other families is invaluable.

“Having a kid with special needs is so isolating. And to just be here with other families that face the same struggles… You’re sharing all of these stresses together, and it’s so cathartic,” she said.

Sarah and her husband, James Pham, also enjoyed the opportunity to immerse themselves in the classes and conversations without the distractions of day-to-day life back home.

“When you’re a parent of a child with special needs, you’re so overwhelmed all the time. And we just need resources, and it’s so hard to figure all those resources out by yourself,” Sarah said.

“You can come here, you can get the camaraderie with the other parents. You can learn about all kinds of things that you didn’t know about before. And it’s just so great. So, we’re really grateful for this.”

Inclusion and lifelong friendships

Lauren and Jonathan O’Brien traveled to the Institute with their daughter, Alannah, 7, and son, Josiah, 4.

Josiah has a genetic deletion on chromosome 15, which causes global delays with a bilateral hearing loss.

Alannah loved the sibling program and made a best friend with another girl in her group. Lauren and Jonathan also befriended the child’s parents.

“I think the most important thing was for us to find a community because we are blessed to be in a really good school district with a deaf and hard-of-hearing community. But there’s not always kiddos that also have all their diagnoses going on. And so here, you not only have the Deaf culture, but there were other kiddos that had similarities to him cognitively,” Lauren said.

“It’s just been amazing for us to have the parent side of it and then to know that (Josiah)’s being seen by all of these top specialists in the field. And then (Alannah)’s having the time of her life with other siblings. It’s so special for all of us to be here together and to get this experience.”

Ramie Nauman’s daughter Alivia is 6 and has a fluctuating hearing loss along with other health conditions. They attended the Institute along with Alivia’s big sister, Malley, who is 19 and studying in the deaf and hard of hearing education program at Illinois State University

Alivia is mostly non-verbal and communicates through sign language. Up until attending the Institute, Ramie and Malley were the only ones who signed with Alivia outside of her school.

“She doesn’t have a lot of people to actually talk to all the time. So, we wanted for her to be able to talk to other kids and other adults. And we’ve heard about the school (ISD) and that everybody signs, and so, she’s been super excited,” Ramie said of preparing for the trip to ISD.

Alivia’s excitement only grew once she arrived on campus and could sign with everyone she met.

“I love to see her in her element, talking to the cook and talking to everybody. So, I think that’s been really fun to watch her be able to communicate with everybody here, which she’s never had before,” Ramie said.

“I feel like everything’s just way less scary because she knows, ‘OK, I can talk to anybody,’” Malley added.

Alivia’s Institute classmate Kingslee also benefited from that immediate sense of belonging, his grandmother Constance said.

Back home in the Collinsville area, Kingslee was the only deaf child in his class. Therefore, his exposure to sign language and communicating with other kids was minimal.

During the Institute, Kingslee formed fast friendships and didn’t want to leave his classroom.

“It’s like a family here. Like my grandmother always said, ‘It takes a village to raise a child.’ And I see this here is his village,” Constance said.

To families thinking about attending the Institute next year, Constance has a simple message.

“Come. If this is your state, come,” she said.

Learn more about the Institute

Visit our Facebook page to see an album of photographs from the the 2024 Institute.

In addition to DSCC, the following organizations supported this year’s program:

• Department of Human Services – Division of Rehabilitation Services
• Illinois School for the Deaf
• Illinois State Board of Education
• Illinois Department of Public Health
• Ann & Robert H. Lurie Children’s Hospital of Chicago

For more information about the Institute and how DSCC supports children with hearing loss, call (800) 322-3722 or email dsccinstitute@uic.edu.

Todd Williams received Division of Specialized Care for Children (DSCC) support growing up and now leads the Evaluation Center at the Illinois School for the Deaf

Todd Williams has come full circle.

Todd, 53, grew up with hearing loss that wasn’t diagnosed until late in his childhood. He enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) and a new world of access opened to him.

That access and support led him to a career that’s opening doors and opportunities for countless other Illinois families of children who are deaf or hard of hearing.

Todd is currently the Evaluation Center Director at the Illinois School for the Deaf (ISD). In this role, he helps school children with hearing impairments all over Illinois receive the right assessment, enrichment and intervention services.

Todd also speaks with parents during the annual Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing on the ISD campus in Jacksonville each June. The Institute is a partnership of DSCC, the Illinois School for the Deaf and other sponsors. It provides valuable education, resources and connections to families of young children with hearing loss in Illinois.

“My involvement with Parent Institute is just to be an advocate and tell them… ‘I’m a client of this program. So, please take advantage of the services that are out there,’” he said.

“The services don’t just come to you. You have to make an effort.”

Todd explains more about how he helps empower and inspire Institute families in the video below:

Todd says he is thankful for the support his family received when they needed it most.

He was in the sixth grade when his language arts teacher noticed something was “off” and mentioned it to his mother. 

“Sometimes you don’t know what you don’t know until you do,” Todd said. “Once my hearing was tested, they couldn’t figure out why I was functioning so well! I remember being able to read lips. Even though I might not hear the bell ring, I could see what the other kids were doing and follow along.”

Todd said his hearing loss was mild to moderate at that time, and school wasn’t a struggle.

He was then diagnosed with bilateral sensorineural hearing loss, a condition where there is damage to the tiny hair cells in the inner ear (known as stereocilia) or to the nerve pathways that lead from your inner ear to the brain.

“We don’t know what caused my hearing loss, but I was sick a lot as a young child with allergies and ear infections,” Todd said. “I must have had hearing at some point because I know what letters and other sounds should sound like, so my speech wasn’t greatly impacted.”

He attended public school during the recession of the 1980s, and money was tight for his family as they started researching how to best support his hearing loss.

“The economic situation was terrible, and probably everybody in town was getting or needed some sort of assistance,” Todd explained.

His mom attended a town meeting about available services, and a woman told her about DSCC.

“That was back when DSCC was called the Division of Services for Crippled Children,” Todd said. “Thankfully, the name has changed, inclusion is growing, and the woman impressed on my mom that DSCC could help.”

For 87 years, DSCC has partnered with Illinois families to help connect children with special healthcare needs – including hearing loss – to the services and resources necessary to reach their full potential.

Thanks to DSCC, Todd began to see audiologists and providers who could help. He also received financial support for the cost of his first hearing aid. (DSCC can provide financial assistance for some eligible medical expenses when families meet certain income guidelines.)

“Having my hearing aid was access. We would have found the money somewhere, but it would have been an incredible hardship,” Todd said. “It was no coincidence that things fell in line. With DSCC it was amazing, perfect timing. That’s the beauty of it.”

Later, when his family moved, DSCC went with them.

“No matter where you go in Illinois, DSCC is there,” Todd said. “They were there to help my family with appointments and hearing aids. I got a second hearing aid when I was a sophomore and getting closer to aging out of the program.”

Todd later started planning for college. He took a placement test at John A. Logan Community College in Carterville. While there, a gentleman saw his hearing aids and gave him contact information for the Division of Rehabilitation Services (DRS or DORS) program.

“DORS helps individuals with disabilities become independent, productive citizens. They helped me through school, and I got my master’s at no cost,” Todd said.

He attended Illinois State University and earned a bachelor’s degree in teaching deaf and hard-of-hearing students. He later earned his master’s degree in counseling as well.

Over the years, Todd has worked in education and counseling and served as a deaf/hard of hearing consultant for the state. He also progressed from being hard of hearing to deaf. Todd now has cochlear implants, which unlocked a new world of sounds for him.

He became ISD’s Evaluation Center Director in December 2020. He says he enjoys empowering families and serving as a role model for youth with hearing loss.

“I had a little kid come up to me in the dining hall who was all excited because I had two implants just like him,” Todd said. “So, there’s the role model part, too, which is important for our kids to see that adults do walk around with these (implants), and they are successful.”

Todd encourages families of young children with hearing loss to attend the Institute and learn how ISD, DSCC and other state programs can benefit their children and families.

“Don’t miss out on a chance when you can really gain the most comprehensive evaluation for your child, and the resource list will be phenomenal,” Todd said.

“You have the ability to ask questions, to get questions answered that maybe you’re not feeling comfortable with asking in another setting. That’s what we’re here for. We’re here to answer questions and become a resource for you so the programing for your child can be the best that it can be. That’s our goal.”

Participant families, please save our (800) 322-3722 number to your contact list!

As part of our commitment to serving our participant families, we want to ensure you can easily reach us whenever you need help or have questions.

Please take a moment to save our toll-free (800) number to your contacts list: (800) 322-3722.

This step will help prevent our calls from being mistaken as spam. It will also help ensure you receive important updates and support from your care coordination team.

Our (800) 322-3722 number remains the simplest and fastest way to reach anyone at the Division of Specialized Care for Children (DSCC).

You can use this number to dial your Care Coordinator’s direct extension or have our Customer Service Representatives connect you with the right person or team.

Saving our number to your phone’s contact list can help improve the process in several ways:

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You may also reach us electronically through our general dscc@uic.edu email address or our Contact Us or Request a Callback forms on our website.

You can also use our new DSCC Family Portal to easily share information and communicate with your care coordination team. You can use the Family Portal to:

• Send messages
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• See a list of providers and much more

To access the portal, visit https://go.uic.edu/DSCCFamilyPortal.

To help you get started, we’ve created several tip sheets and videos for how to use the Family Portal. You can find these resources on our website at https://dscc.uic.edu/dscc-family-portal/.

If you have trouble accessing the Family Portal or need other support, please email dsccexternalhelp@uic.edu.

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