2024 Health Insurance Education Webinar Series for Families Kicks Off in March
Free virtual training sessions for Division of Specialized Care for Children participants, their families and anyone interested in learning more about health insurance topics
Is figuring out your health insurance leaving you confused, frustrated or both?
Change your confusion to confidence with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Health Insurance Education Series.
These free trainings can help you better navigate your health insurance coverage and benefits. Each month, DSCC team members and other presenters will explain a different topic.
Each presentation will be in English. A Spanish interpretation line will be available during each session.
Check out the topics, mark your calendars and register for each session you’re interested in attending.
The session descriptions are in English followed by Spanish:
- Social Security Benefits, March 12 at 6 p.m.
- This training will help you understand Social Security benefits. Presenters from the Social Security Administration will share information about Supplemental Security Income and Social Security Disability Insurance. You will learn who can get benefits and how to apply for benefits. It will also cover what the Social Security program benefits are and how to keep your benefits.
- See the Social Security flyer for more details.
- Register on Zoom for Social Security Benefits
- Medicaid Denials, April 9 at 6 p.m.
- This training will help you understand Medicaid denials. It will review the common reasons that Medicaid denies services, such as equipment. The presentation will also share tips on how to avoid denials and what to do if Medicaid denies your services. This training will be for those with regular Medicaid and those enrolled in a managed care plan (MCO).
- See the Medicaid Denials flyer for more details.
- Register on Zoom for Medicaid Denials
- Transitioning Health Insurance Benefits to Adulthood, May 14 at 6 p.m.
- This training will help you understand how to transition health insurance benefits to adulthood. It will go over different insurance types, including Medicaid, Medicare and private insurance. This presentation will help you know what to start thinking about for health insurance benefits as you or your child nears adulthood.
- See the Transitioning Health Insurance Benefits to Adulthood flyer for more details.
- Register on Zoom for Transitioning Health Insurance Benefits to Adulthood
- Beneficios de Seguro Social, 12 de marzo a las 6 p.m.
- Esta capacitación lo ayudará a entender los beneficios del Seguro Social. Los presentadores de la Administración del Seguro Social compartirán información sobre el Seguro de Ingreso Suplementario y el Seguro de Incapacidad del Seguro Social. Aprenderá quién puede obtener beneficios y cómo solicitarlos. También cubrirá cuáles son los beneficios del programa de Seguro Social y cómo conservar sus beneficios.
- Consulte el folleto de Beneficios de Seguro Social para obtener más detalles.
- Enlace para registrarse
- Negaciones de Medicaid, 9 de abril a las 6 p.m.
- Esta capacitación lo ayudará a comprender las negaciones de Medicaid. Revisará las razones comunes por las que Medicaid niega servicios, como equipos. La presentación también compartirá consejos sobre cómo evitar negaciones y qué hacer si Medicaid niega sus servicios. Esta capacitación será para quienes tienen Medicaid regular y quienes están inscritos en un plan de atención administrada (MCO).
- Consulte el folleto de Negaciones de Medicaid para obtener más detalles.
- Enlace para registrarse
- Transición de los beneficios del seguro médico a la edad adulta, 14 de mayo a las 6 p.m.
- Esta capacitación lo ayudará a comprender cómo hacer la transición de los beneficios del seguro médico a la edad adulta. Tratará diferentes tipos de seguros, incluidos Medicaid, Medicare y seguros privados. Esta presentación le ayudará a saber en qué empezar a pensar en cuanto a los beneficios del seguro médico a medida que usted o su hijo se acercan a la edad adulta.
- Consulte el folleto de Transición de los beneficios del seguro médico a la edad adulta para obtener más detalles.
- Enlace para registrarse
You can also download a flyer with all the Health Insurance Education Series topics and registration links. (The flyer is also available in Spanish.)
The webinars are open to DSCC participants, their family members and anyone interested in these topics.
This is the second year for the DSCC Health Insurance Education Series. It began in response to DSCC families’ questions and suggestions from our Family Advisory Council.
Details about each series session are also posted on our Events page.
The 2024 Health Insurance Education Series is free for all attendees.
If you miss a session, you can access the recordings and related materials on our Family Education Webinars page.
If you have questions about these webinars before or after a session, email firstname.lastname@example.org or call (800) 322-3722.
We look forward to seeing you online!
Applications Open for the 2024-25 IL LEND Fellowship Program
This free training program prepares graduate students, self-advocates and family members to be leaders in improving health services for people with disabilities.
Family members, self-advocates and graduate students can apply for a free training program to build your skills and improve the quality of life for people with disabilities.
The University of Illinois Chicago’s (UIC) Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) training program is now accepting applications for the 2024-25 school year.
This yearlong interdisciplinary program will provide participants a deep dive into areas that include:
- Cultural competence
- Emerging issues
- Family-centered care
- Serving children with autism and other disabilities and their families
- Services and systems change
IL LEND is housed in the Department of Disability and Human Development at UIC. It is part of LEND’s nationwide network providing interdisciplinary training to improve the health and well-being of individuals with disabilities. LEND focuses on providing individuals with the skills necessary to create positive change on all levels, from the individual to systems.
The IL LEND fellowship program brings together trainees from diverse backgrounds. Trainees will participate in classroom learning and a wide variety of hands-on experiences.
Training will focus on serving individuals with disabilities and their families through coordinated, culturally competent and family-centered care and gaining a deeper understanding of public health services and policy systems change.
Training will include:
- An individually tailored mentorship
- Weekly didactic (classroom) sessions
- Research or leadership projects
- Community outreach
- Policy and advocacy training
- Clinical training with a focus on Autism
There is no cost to participate in the fellowship program. Eligible trainees can receive a stipend.
This program is open to graduate students, adults with developmental disabilities, parents and/or siblings of individuals with developmental disabilities, and individuals from diverse backgrounds.
IL LEND trainees from the Chicago metropolitan area meet in person at UIC for their LEND training. Trainees can also join remotely through training sites at the University of Illinois at Urbana-Champaign (UIUC) and Southern Illinois University Carbondale (SIU).
The program gives priority to the following applicants:
- Family members
- Graduate students in the represented disciplines, which include nursing, social work, developmental pediatrics, disability studies, and public health.
See the IL LEND graduate program brochure for more details and a complete list of study areas.
Download the IL LEND Fellowship Program application flyer to review or share.
Read more about applying on the IL LEND website. You can also click on the links below to download the:
The deadline to apply is March 25.
If you have questions about the fellowship program, contact Kruti Acharya at email@example.com or (312) 413-1495.
To learn more about IL LEND, visit www.illinoislend.org.
DSCC Families, It’s Time to Share Your Input!
Our annual family survey is an easy way to share your feedback and make a direct impact.
Our participant families are important to us, and your feedback matters.
On Feb. 15, 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 either by email or mail, based on your preferences. If you respond, you will have a chance to win a $50 Visa gift card.*
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
Listening to our participant families is a priority. Your ideas and concerns have helped strengthen our services and guide improvement projects.
Here’s an overview of how the 2023 survey input and overall family feedback made a difference at DSCC:
- Our authorizations are now easier to fill out and keep up to date. We updated the form authorizing us to share information with multiple providers, meaning only one signature on one form.
- Our online resource library is now searchable. Families shared their need for more resources. In response, we updated our online Resource Directory and Events page to add search features. This improvement should help all Illinois families of children and youth with special healthcare needs find and share resources more easily.
- We resumed face-to-face visits. Our care coordination teams resumed face-to-face visits with families following the end of the public health emergency on May 11, 2023. Meeting in person should further improve our connection and engagement with families.
- We created a new Family Portal. In October 2023, DSCC introduced a new Family Portal to better connect families with their care teams. The portal gives participant families one place to communicate with their care coordination teams, sign documents and access information.
- We created “All About Me” Pages to help others get to know your child. DSCC developed “All About Me” Pages so families can highlight their child’s strengths, medical needs and more. Families can personalize the templates to best fit their child’s personality. You can share these templates with medical providers, schools, other caregivers and so on. These pages should make it easier to share what works best for your child, what they like and dislike, and their medical needs. These templates are available on our website’s “All About Me” Pages section.
- We’ve partnered to improve nursing availability throughout the state. Nursing agencies that work with DSCC can now receive a license to work across the state. We partnered with the Illinois Department of Public Health to make this change. The new license process offers more opportunities for nursing coverage for families of children and adults with complex medical needs. DSCC is also developing NurseNet. This interactive website will allow families looking for nursing to connect with nursing agencies.
Please be on the lookout for our annual survey on Feb. 15.
If you have questions or need more information, please contact your Care Coordinator.
We appreciate your partnership and look forward to hearing from you!
Project to Improve Mental Health Support Benefits DSCC Teens
The B.E.S.T. study looks at how care coordination services that include mental health support can help teens with intellectual and developmental disabilities.
The teenage years can be a challenging time for all teens, including teens with intellectual and developmental disabilities (IDD).
Is your teen or young adult feeling sad, stressed or overwhelmed?
Consider joining the B.E.S.T. study. B.E.S.T. stands for Behavioral Health Stratified Treatment (B.E.S.T.) to Optimize Transition to Adulthood for Youth with IDD.
The B.E.S.T. study wants to know if care coordination services combined with mental health programming can help teens with IDD live happier and healthier lives.
All Division of Specialized Care for Children (DSCC) participants receive care coordination services. B.E.S.T. study participants receive access to additional behavioral and mental health resources and support.
DSCC participant Lily Kohtz, 19, (pictured on the left in the above photo) says her mental health has improved since taking part in the B.E.S.T. study.
Lily has spina bifida, uses a wheelchair and has difficulty with anxiety and depression due to her disabilities.
“I think a lot of people don’t connect anxiety or depression to having a disability,” she said. “The B.E.S.T. study has helped me talk about these things. We all have bad days, but depression is worse. Understanding how disability and mental health are tied together and having strategies to use to help me cope has really helped me.”
Lily says she’s enjoyed the online group sessions, where she now meets monthly with four other teens and a group leader. All meetings are confidential.
“We go over coping strategies such as controlling your thoughts and getting rid of the negative. I frequently use the skills we’ve learned and feel like my mental health has improved,” she said.
Lily’s mom, JoAnn Watkins (pictured on the right in the above photo), agrees that the study has benefitted Lily in many ways.
“I’ve seen a positive difference in Lily since she started with the B.E.S.T study. She’s using the skills she’s learned, and you can really see the improvement in her attitude and overall mental health.”
The study began recruiting participants in late 2022. More than 250 DSCC participant families have enrolled in the study so far.
Eligible DSCC participants must be enrolled in DSCC’s Core Program or Connect Care Program. (Please note that DSCC teens enrolled in the Home Care Program are not eligible to participate.)
The B.E.S.T. study is a free and voluntary project. Teens can join the study if:
- They currently have a DSCC Care Coordinator and are enrolled in DSCC’s Core or Connect Care programs.
- They are between 13 and 20 years old.
- They have an intellectual or developmental disability.
- They can comprehend at a fourth-grade or similar level.
- They can read and speak English.
- They have a computer, tablet or smartphone they can use to access the internet.
- They have permission from their parent, caregiver or guardian (if they are under 18).
The B.E.S.T. study team developed the project with input from a group of B.E.S.T. Study Scholars. These scholars are teenagers with IDD who tested and reviewed all of the B.E.S.T. study materials.
Teens who join the study are put into one of two groups:
- Group A receives care coordination services as usual from their DSCC Care Coordinator.
- Group B receives care coordination services and mental health support from the B.E.S.T. team. This support is based on each teen’s needs and can include:
- Mental health education
- Online group sessions
- Caregiver education and support
The study is a virtual program that will continue recruiting through December 2025.
The B.E.S.T. study is a partnership between DSCC and the University of Illinois Hospital and Health Sciences System (UI Health), the University of Illinois Chicago’s (UIC) Department of Disability and Human Development and the UIC Department of Pediatrics.
The principal investigators are Dr. Benjamin Van Voorhees and Dr. Kristin Berg.
The B.E.S.T. study team includes mental health professionals from Illinois, California and Massachusetts. They are all working together to find a way to promote the health and well-being of teens with IDD.
You can learn more information for both teens and parents/caregivers on the B.E.S.T. study website.
If you would like to join the study or have questions, please email the B.E.S.T. study team at firstname.lastname@example.org or call (833) 732-5778.
If you choose to join, you and your family can support research that helps other teens and families.
Both parents/caregivers and teens must agree to be in the study. (Note that if a teen is their own legal guardian, they can participate alone or with a parent/caregiver if they choose.)
Those who join will be compensated for their time.
We’re excited to continue our partnership on this important research project!
Introducing “All About Me” Pages to Highlight Your Child’s Strengths, Needs and More
We’ve created free templates you can personalize to help doctors, schools and others get to know your child
It takes a village to care for children and youth with special healthcare needs. Parents and caregivers must partner with many different team members — specialists, nurses, therapists, educators and so on — to help their children reach their full potential.
Ensuring everyone understands your child and their unique needs can be exhausting. We want to help make it easier to share your child’s strengths, wants, goals and more.
We’ve created “All About Me” Pages that you can personalize to help anyone get to know your child. These free templates highlight what works best for your child, what they like and dislike and who they are as a person.
There are a variety of designs to choose from to help you capture your child’s personality and what makes them unique.
Visit the new “All About Me” Pages section of our website to see the templates and learn how to customize them for your child.
Our “All About Me” Page templates are available for anyone to download and customize.
If you are a Division of Specialized Care for Children (DSCC) participant and need help using the templates, please contact your Care Coordinator.
We hope these pages can be helpful conversation starters with new doctors, nurses, teachers and other caregivers for your child.
Home Care Region 2 Care Coordinator Earns DSCC’s Award of Merit
DSCC honors Ned Kostur for outstanding service to Illinois children and youth with special healthcare needs and their families
Care Coordinator Ned Kostur is the 2023 recipient of the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Merit Award.
The award recognizes exceptional employees for outstanding dedication and service to Illinois children and youth with special healthcare needs.
“Ned is an outstanding Care Coordinator. He is a trusted mentor to his teammates and a caring and dedicated partner to the families he serves, helping meet their needs and improve the quality of their lives,” DSCC Executive Director Thomas F. Jerkovitz said.
Ned is based in our Lombard Regional Office and works for DSCC’s Home Care Region 2. As a Care Coordinator in the Home Care Program, he helps families of children and youth who need in-home nursing to safely live at home.
Many of the DSCC participants Ned works with are on the Home and Community-Based Services Waiver for Those Who are Medically Fragile Technology Dependent (commonly called the MFTD waiver). These children and youth have more complex medical needs that require a higher level of care.
Ned helps educate their families about the services and benefits of the MFTD waiver and other state programs that can help meet their needs. He also guides families through the process of modifying their homes to support their child’s medical care and equipment.
“I meet with families, which I enjoy very much. It’s just a rewarding experience to get a piece of equipment or to finally find that right nursing fit for that family and just to see the smile on the family’s face as we’re aiding them in their journey in helping their child,” Ned said. “It’s just a great organization to work for.”
Ned began his journey with DSCC in 2003. Over the last two decades, he has worked in both the Core and Home Care programs.
Ned is a “go-to” for his colleagues who describe him as caring, compassionate, considerate, and hard-working. They also love how his passion for serving our participant families shines through in all his actions.
“Ned exemplifies what great care coordination looks like and its positive impact on the families we serve,” said Terri-lynn Jones Wood, Assistant Director of Home Care Operations for Regions 2, 4 and 6.
“He has a true desire to bring families a sense of relief and understanding that they have someone on their side, someone they can trust and rely on,” Home Care Region 2 Regional Manager Mariangely Spilotro-Marquez added.
“He takes great pride in his work and ensuring that families understand Home Care, the services provided, what his role is and how he can assist them.”
Ned draws on his experience in clinical psychology, biology, treatment and discharge planning, quality assurance, teaching and more to help others. His Lombard teammates appreciate his wealth of knowledge about DSCC processes and resources, sense of humor and willingness to help in any situation.
“He has shown me what it means to be dedicated, empathetic and professional,” Program Coordinator Assistant Kimberley Firkins said. “Ned’s the perfect example of what it means to partner, help, and connect, not only with our families and providers but also within the organization, with his teams, and his co-workers.”
Learn more about Ned and his exceptional service to families in this video below:
DSCC staff nominated a total of five of their colleagues for this year’s Merit Award. As the winner, Ned receives a Merit Award memento, a $2,500 award and recognition from the Executive Director.
The other 2023 nominees are:
- Elizabeth “Liz” Bailey, Home Care Enrollment Manager, Lombard Regional Office
- Lisa Garbe, Assistant Regional Manager. Marion and Olney Regional Offices
- Mayra Rubio, Bilingual Care Coordinator, Mokena Regional Office
- Amanda Simhauser, Communications Manager, Central Administrative Office in Springfield
A big congratulations to Ned and all the 2023 nominees! We are grateful for your service and commitment to Illinois families!
DSCC Partners in Research Study to Improve Home Health Care for Children
“SafeCare@Home4Kids” aims to understand and prevent safety issues at home for children with medical complexity
The Division of Specialized Care for Children (DSCC) is excited to partner on a new research study to help improve home health care for children with complex medical needs.
The research team is led by Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago. Foster is one of our Medical Advisory Board Members.
Foster and her research team have received a $2 million grant award to fund the study, called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.”
This study will bring together experts and patient families to better understand how family caregivers and home nurses can help identify, communicate and prevent safety issues at home for children with complex medical needs. The study will use this input to create a digital safety toolkit to help support families.
DSCC Executive Director Thomas F. Jerkovitz said DSCC appreciates this opportunity to partner in the study. He said DSCC will share our team’s experiences with families and home nurses who report safety challenges at home.
Dr. Molly Hofmann, our Director of Care Coordination, Systems Development and Education, is one of the participating experts.
“DSCC plays such a pivotal role in supporting care in the home and… is a repository for safety events,” Foster said. “DSCC also plays such a functional role in creating solutions, so it was pretty clear to me I wanted to have DSCC be a partner in the grant.”
Children with medical complexity need substantial amounts of care to live safely at home. In recent years, their families have taken on increasingly more in-depth medical care at home.
“We send patients home with increasingly more complex medical regimes, and families have expressed to us they didn’t have a clear way to get the support they need when experiencing problems at home,” Foster said.
“A lot of our patients have an artificial airway to help them breathe or they have a g-tube in their stomach to help them eat. If that gets clogged or it falls out or the tubing connected to the machine gets broken, then they can’t get the nutrition they need and they end up in the emergency room. And it’s a life-threatening event at home if their airway isn’t working,” Foster continued. “The idea for the study is we want to find out what are the things leading up to when those safety events occur so we can prevent them.”
“SafeCare@Home4Kids” also wants to help improve communication when medical device and equipment malfunctions happen at home.
“Doctors don’t always know, and families might not know that they should or can tell us about it. They might tell the DME (durable medical equipment company) to get the replacement part, but we don’t know about it, so we keep ordering it for other patients,” Foster said. “It’s both an issue for current patients and also an issue for future patients.”
The study aims to create a better system where families can communicate safety problems at home and know who to notify when they occur.
“One of the problems we recognize is families are scared they’re going to get in trouble. We want to make sure they feel supported to let us know when medical problems are happening at home,” Foster said. “The goal is to move past the reporting safety events to preventing them in the first place.”
The study will also host focus groups to hear directly from families about the safety issues that affect them.
“The goal is to hear from real families on what it’s like day-to-day,” Foster said. “Hopefully it’s the beginning of several projects to support how we’re improving care in the home.”
If you are a family member and would like to participate or learn more about the “SafeCAre@Home4Kids” study, you can email Foster at email@example.com.
We are excited to collaborate with Foster and her research partners on this important project. We’ll share more updates and opportunities to get involved as it progresses.
The project kicked off in September and will continue through July 31, 2027.
Sensory-Friendly Holiday Happenings in Illinois
Fun, inclusive events the whole family can enjoy throughout Illinois!
How will you make memories this holiday 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.
You can also browse this collection of special programs and event guides for opportunities to create some holiday magic and plenty of smiles:
- Autism Speaks and Cherry Hill Programs will provide sensory-friendly Santa experiences in Illinois and the St. Louis area on Dec. 3. These visits are free. Keepsake photo packages will be available for purchase. You must sign up to attend. 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 ages 10 and younger. Please complete the letter request form before Dec. 15. If you have any questions, call (410) 659-9314, ext. 2236, or email firstname.lastname@example.org.
- The Secret Sleigh Project is coordinating volunteers to provide in-home Santa visits to children who are medically fragile. Use the “Request a Santa Visit” form on the project’s website to request a visit.
- For families in the southern Illinois area, SI Families’ event calendar provides a great list of fun, seasonal activities. Other events in the area include Sensitive Santa at Heartland Regional Medical Center in Marion, the Carbondale Lights Fantastic Parade, and the DuQuoin Holiday Lights Fair.
- For options in central Illinois, check out these lists from ChambanaMoms.com and Springfieldmoms.org. Great places to see lights include Chatham Lights up the Park, Festival of Lights in East Peoria, and Mattoon Lightworks.
- For Chicagoland residents, WTTW Public Television, Chicago Parent Magazine and Kidlist have some great suggestions for things to do and see. Want to catch a show? Chicago Children’s Theatre features accessible weekends for children and their families.
- Don’t forget to check with your local zoos! The St. Louis Zoo and Lincoln Park Zoo will offer a sensory-friendly viewing option. Contact your local zoo to see what’s happening and when.
We will continue to add holiday events and activities, so please check our Special Events page often throughout the season.
If you know of a good sensory-friendly event to share, please email us at email@example.com.
Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in organizing or scheduling these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.
DSCC Rolls Out New Tool to Better Connect With Our Participant Families
The DSCC Family Portal can help you easily communicate with your care coordination team and find the information you need
It’s important for our Division of Specialized Care for Children (DSCC) participant families to be active partners in their child’s care. We’re excited to introduce a new way for you to easily share information and communicate with your DSCC care coordination team.
Our new DSCC Family Portal aims to help you find the records you need all in one convenient place.
You can use the Family Portal to:
- Send messages
- Sign documents
- View important letters
- See a list of providers and much more
To access the portal, visit https://go.uic.edu/DSCCFamilyPortal.
To log in to the Family Portal for the first time, you will need:
- Your email address
- Your DSCC participant’s name or DSCC ID number
- A unique password
We know learning a new application can seem tough. We have tip sheets and videos to help you get started and feel comfortable using the 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 firstname.lastname@example.org. A designated DSCC staff person will help you as soon as possible.
We are always looking for ways to improve our services and strengthen our support for families.
We hope the Family Portal will be an easy and convenient way for you to connect with your care coordination team and the resources you need.
DSCC Dad Helps Superheroes of All Abilities Unite in Southern Illinois
Pastor Tim Reynolds organizes the annual Special Needs Superheroes event to take place in Mount Vernon on Oct. 28
In Mount Vernon, superheroes of all kinds unite each year to bring joy to children and adults with disabilities.
Mount Vernon Baptist Temple’s annual Special Needs Superheroes event encourages individuals of all ages and abilities to dress as their favorite superhero and enjoy fall activities together. This popular free celebration returns for its fifth year on Oct. 28.
Pastor Tim Reynolds helped create the event and credits his wife, Melissa, and a dedicated group of volunteers with keeping it running. Reynolds’ daughter Isabella has complex medical needs and is a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).
Reynolds said the idea for the event came from a desire to serve his small community in southern Illinois.
“It can be hard for families and individuals with disabilities to go to a theme park. We have a church with a good layout, nice grounds, and a gymnasium,” Reynolds said. “I pastor two churches, and we decided to work together to create a special day for young and old alike that was as close to a carnival atmosphere as possible.”
Choosing a superheroes theme, the first event kicked off in 2018.
“I’m not sure why we chose the superheroes theme, but it fit, and it’s lots of fun. The first year we had about 400 attendees,” Reynolds said.
The event continued to grow each year except for a one-year gap in 2020 due to the COVID-19 pandemic.
“This year we’re planning for more than 800 guests. We have a bunch of folks who love Comic-Con. They have amazing costumes and travel from Missouri, Kentucky, Indiana and other places to help us year after year,” Reynolds said.
Volunteers from churches, 4-H clubs, government, and more serve as “buddies.” They help participants of all ages and abilities experience activities that include:
- A petting zoo and horseback rides
- Face painting and games
- Balloon tying with Rainbow the Clown
- Superhero photos
- Brats, hamburgers, snow cones and popcorn
“It’s just a big kick. Some people like dressing up, others just like taking it all in,” Reynolds said. “I really love the horseback riding and seeing them with the animals. For some, it’s the first time they’ve ever ridden a horse or been able to touch and be up close to these animals. They’re so uninhibited in expressing their excitement and joy. You can’t help smiling all over.”
The guest list also includes community members and residents from area Community Integrated Living Arrangement (CILA) Homes.
The whole Reynolds family, including Isabella and her three older siblings, also take part in the fun.
Reynolds said his wife, Melissa, organizes all the details for the superheroes event. She prefers to remain in the background while he is “just the promoter and front man.”
“She is the rock of our family and works tirelessly caring for Isabella,” Reynolds said.
Isabella has Moebius syndrome, a rare neurological disorder that can cause paralysis, an inability to smile and other disabilities.
“We adopted her as a baby and the doctor said she wouldn’t live past a year old,” Reynolds said. “She’s a happy girl and recently turned 12.”
Isabella enrolled with DSCC shortly after birth and receives services through the Home Care Program. The Home Care Program helps children and young adults who need in-home nursing to safely live at home.
“We connected with DSCC at the hospital and really appreciate all that they do,” Reynolds said. “DSCC has helped us track down nursing services and medical equipment. They’re always there to help and are another go-to when you need help filling in the gaps.”
Members of our DSCC team from the St. Clair Regional Office will be at this year’s Special Needs Superheroes event to speak with families about our services.
The event takes place from 4 to 6:30 p.m. on Oct. 28 at Mount Vernon Baptist Temple, 817 Woodland Drive, in Mount Vernon. There is no charge to attend.
“Everything is completely free,” Reynolds emphasized. “There’s nothing better than the smiles and hugs you get from kids with sno-cone-covered faces. We started all of this to be a blessing to someone, but I think we, the volunteers, are truly the ones who go away blessed.”
If you’d like to attend, please call or text (618) 315-1111 to register. The deadline to sign up is Oct. 23.