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:

• Have quicker access – Having our number readily available in your contacts can save time when you need assistance or have questions.
• Avoid spam filters – Saving our number reduces the likelihood our calls will be flagged as spam.
• Communicate more seamlessly – Having one number to call helps ensure smoother communication whenever you need support or would like to share feedback.

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
• Sign documents
• View important letters
• 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.

You can also speak with your Care Coordinator if you need to update your communication preferences.

Our office hours are 8 a.m. to 4:30 p.m. Please talk to your Care Coordinator if you need to speak outside of business hours.

We want to ensure our care coordination teams are easily accessible for everyone in our programs.

Thank you for your cooperation and partnership!

Programs offering free tax preparation and help filing tax returns are available to eligible individuals and families across Illinois.

People with disabilities, families with low income, taxpayers who speak limited English, and individuals over the age of 50 can receive tax help through in-person and online programs.

Many of the programs will provide help through April 15, the deadline for filing your 2023 tax return. The type of services and programs available will vary by region.

The Internal Revenue Service’s (IRS) Volunteer Income Tax Assistance (VITA) and Tax Counseling for the Elderly (TCE) programs offer free basic tax return preparation to qualified individuals.

VITA sites offer free tax help to individuals, including:

• People who genrally make $64,000 or less
• People with disabilities
• Taxpayers who speak limited English
• People 60 years of age or older

The AARP Foundation Tax-Aide Service focuses on providing in-person and online tax help to people over the age of 50 or who have low-to-moderate income. You do not need to be an AARP member to receive assistance.

The AARP Tax-Aide Site Locator can help you find a site where an IRS-certified volunteer can help you prepare and file your taxes.

Tax-Aide also offers free virtual coaching and software for state and federal returns if you prefer to do your own taxes. You must:

• Have an income between $16,000 and $79,000
• Be an active-duty military member making $79,000 or less

In the Chicagoland area, taxpayers can also access the Ladder Up Tax Assistance Program (TAP). The program provides free basic tax return preparation for:

• Families earning up to $64,000 and individuals earning up to $32,000 per year
• Full-year Illinois residents

You can also contact your local library and government offices for information about free tax preparation services in your area.

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 dscc@uic.edu or call (800) 322-3722.

We look forward to seeing you online!

The annual academic scholarship program is taking applications for the upcoming school year through March 31.

The Illinois Department of Children and Family Services (DCFS) is currently accepting applications for the 2024 DCFS Scholarship Program. The program offers tuition money and academic fee waivers to current and former youth in care attending Illinois colleges after high school.

The program is available to youth:

• Who have an open DCFS case
• Whose cases were closed through adoption or guardianship
• Who aged out of care at 18 or older

Students interested in attending Illinois trade schools, community colleges, or traditional colleges or universities and who are at least 16 years old on March 31 may apply.

The scholarship application is available online.

Scholarship recipients will receive:

• Up to five consecutive years of tuition and academic fee waivers to be used at participating Illinois state community colleges and public universities
• A monthly grant to offset other expenses
• A medical card

The program will select scholarship recipients based on:

• Their scholastic record and aptitude
• Community and extracurricular activities
• Three letters of recommendation from non-relatives
• A personal essay illustrating their purpose for higher education

This DCFS Scholarship Program tip sheet has more details about eligibility requirements, available benefits and what the scholarship does not cover.

DCFS encourages students to submit their applications before the March 31 deadline.

Last year, DCFS awarded scholarships to 259 college-bound youth, the most in the agency’s history.

For questions about the application process or for more information, contact the DCFS Office of Education and Transition Services at (217) 557-2689 or DCFS.Scholarship@illinois.gov.

See the 2024 scholarship press release for more details.

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!

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 beststudy@uic.edu 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!

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 education@nfb.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 dscc@uic.edu.

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.

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
• Haircuts
• 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.”

See the Special Needs Superheroes flyer for more details or visit the Events section of our website.

If you’d like to attend, please call or text (618) 315-1111 to register. The deadline to sign up is Oct. 23.