Share Your Input and Connect at Our Family Advisory Council Open Forum on May 8

April 8th, 2025

DSCC Family Advisory Council logo showing a colorful chain of stick figures holding hands in front of an outline of the state of Illinois

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!

Get Hopping to Sensory-Friendly Bunny Visits and Egg Hunts in April

March 26th, 2025

A girl wearing bunny ears has a basket full of colorful eggs on her lap. She is smiling in her wheelchair.

Enjoy inclusive egg hunts, time with the Easter Bunny and lots of family fun at sites across Illinois

Wondering where the Easter Bunny will hop next?

Check out our Special Events page to find sensory-friendly Easter Bunny visits and egg hunt options for individuals with disabilities of all ages.

The Bunny Cares program offers Easter Bunny visits in a calmer, quieter environment that supports visitors’ sensory, physical and developmental needs. Autism Speaks and Cherry Hill Programs have teamed up to provide these special Bunny Cares photo opportunities.

Bunny Cares events are scheduled at several malls in Illinois on Sunday, April 6.

Click on the locations below to learn more and book your free sensory bunny visit (be sure to search the event schedule for “Bunny Cares,” “Caring Bunny” or “Sensory Bunny” for each location):

Photos will be available to buy at each event. Reservations are limited. Visit the Bunny Cares website for more details and a complete list of sites.

There are more “eggs-cellent” opportunities to meet the Easter Bunny and hunt for eggs throughout Illinois.

If you’re located in the west and northwest suburbs, check out Kidlist for Easter egg hunts and more.

We’ve also highlighted a variety of egg hunts and bunny visits happening in communities across the state. These events include:

Our Special Events page has more opportunities for finding colorful eggs, having fun and celebrating spring.

Many of the events are free. You can use the contact and registration information provided with each event listing to learn more.

Please note that the Division of Specialized Care for Children (DSCC) does not sponsor or organize these events. We are sharing the details to help families find inclusive events in their communities.

Inclusive Camps for All Ages Offer Fun, Friendships and New Adventures!

March 10th, 2025

Colorful pieces of chalk surround a small cloud-shaped chalkboard. Blue, yellow, purple and turquoise chalk was used to draw a sun and write "Summer Camp" on the chalkboard.

Check out our summer camp list to explore opportunities and find the right fit for your camper

Does your child want to make new friends? Develop new skills? Meet others with their condition or become more independent?

Head to our 2025 summer camp list. You’ll find accessible day, overnight and family camps across Illinois and beyond.

These programs welcome campers with a wide range of needs, abilities and many of our Core Program’s eligible medical conditions. The camps also cater to a wide range of interests, including:

  • Learning to program and other computer skills
  • Building independence and self-advocacy skills
  • Exploring the great outdoors
  • Cooking, art, drama and more

If you’re looking for the perfect camp opportunity, there are several ways to search on our website:

Our list continues to grow, so check back often!

PLEASE NOTE: we share these opportunities for information purposes only. The Division of Specialized Care for Children (DSCC) does not manage or coordinate these camp opportunities or programs. If you have questions about a specific camp, please use the contact number or website we list for each program.

If you know of any summer camp opportunities we should add, please send us the details at dscc@uic.edu.

Here’s to a fantastic summer filled with smiles and new experiences!

Annual Illinois Statewide Transition Conference Maps Out Routes to Adulthood

March 4th, 2025

A family of four smiles together in the middle of the hotel lobby. The parents are on either side of their children. Their teen son is in front, he uses a wheelchair. His younger sister stands behind him.

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.”

Three DSCC team members stand behind DSCC's table at the 2024 Transition Conference. The table has handouts, backpacks, pens, and other items to share with attendees. A DSCC banner stands upright behind them. It has photos of families and information about DSCC.
DSCC team members, from left to right, Kendra Irby, Courtney Kerfoot and Erica Stearns stand behind DSCC’s booth at the 2024 Transition Conference.

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.

A DSCC team member gives a presentation to conference attendees. She holds a microphone while standing in front of a presentation slide. Conference attendees sit in the first and second rows.
DSCC’s Assistant Director of Research and Practice Initiative for Title V Programs, Dr. Ebonie Zielinski, gives a presentation on the B.E.S.T Study. The study looks at how care coordination services that include mental health support can benefit teens with intellectual and developmental disabilities.

“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.”

A conference attendee smiles in the middle of the hotel lobby. He uses an electric-powered wheelchair. His service dog is next to him.
Conference attendee Jani, 14, smiles next to his service dog, Poppy. They are in the lobby of the Crowne Plaza Hotel.

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.

A mother and daughter sit next to each other during a meetup for DSCC participants. People stand around the chairs in the rows behind them.
Conference attendees Tamara and her daughter, TaLeah, 17, enjoy the DSCC Family/Caregiver, Youth/Young Adult Meetup. DSCC’s Home Care Family Outreach Associate Erica Stearns organized the meetup to bring DSCC families together at the start of the conference.

She is an accomplished basketball player who plans to go to college, play basketball and be successful.

 “I want her to be strong, and I want her to be confident,” said Tamara.

“I want her to continue to advocate for herself and others. And I think she’s doing a good job thus far.”

Tamara said she is trying to give her daughter the best tools and equip her the best way she knows how.

“All this information is very helpful and hopefully it’ll help build her up.”

Brenton Braxton said the resources and knowledge his family gained at the conference will help him achieve his goals.

“I think some things from here that I learned is that not only I’ll still have my independence, but I can also use my parents to help me in my journey and to living it to the fullest and doing all the things I want to do,” he said.

On turning 18, he said, “It’s a big step, but I feel like with the support from my family and people around me, it’ll be good.”

Save the Date for the 2025 Transition Conference

The 2025 Illinois Statewide Transition Conference will take place Oct. 30-31 at the Crowne Plaza Hotel and Convention Center in Springfield.

To learn more about how to support youth with special healthcare needs during the transition to adulthood, contact DSCC at (800) 322-3722 or visit dscc.uic.edu.

For more information about the Transition Conference, visit www.illinoistransitionconference.org/.

Check out our Facebook page to see a photo album with more photos from the 2024 Transition Conference.

Free Family Webinar Series Focuses on Medicaid Waivers

February 12th, 2025

On the left is a dark blue box with rounded corners with white text that says: Health Insurance Education Series. DSCC's logo is below it. In the upper right and going down the page is a cup of coffee, part of a keyboard and a bright gold pen.

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.
  • Division of Rehabilitation Services (DRS) Medicaid Waivers, April 8 at 6 p.m.
  • Division of Developmental Disabilities (DDD) Medicaid Waivers, May 13 at 6 p.m.
  • 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.
  • Excepciones de Medicaid de la División de Discapacidades del Desarrollo (DDD), 13 de mayo a las 6 p.m.

You can also:

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.

DSCC Families, We Want Your Feedback!

January 22nd, 2025

The text "Your Feedback Matters" coming out of a megaphone icon

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!

Be a Part of Illinois Miss Amazing

January 16th, 2025

Illinois Miss Amazing logo

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.

Share Your Feedback to Allow CNAs as Paid Family Caregivers

January 2nd, 2025

A father holds and plays with his son with disabilities while enjoying time together outdoors.

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

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. 

Sensory-Friendly and Inclusive Holiday Events for All Ages

November 23rd, 2024

A young girl with Down syndrome wearing a winter coat and hat standing outdoors in front of a Christmas tree

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:

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.

Share Your Input at Our Nov. 14 Family Advisory Council Open Forum

October 16th, 2024

DSCC Family Advisory Council logo showing a colorful chain of stick figures holding hands in front of an outline of the state of Illinois

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:

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!