Hippity-hoppity, the Easter Bunny is on its way!

Sensory-friendly Easter Bunny visits are happening at sites throughout Illinois and the St. Louis area. Individuals of all ages and abilities may schedule an appointment.

The visits will take place in a calmer, quieter environment that supports visitors’ sensory, physical and developmental needs. Autism Speaks is partnering with Cherry Hill Programs to provide these special Easter Bunny photo events.

The Bunny Cares experiences are free. Photos will be available to buy at each event.

You can see the Easter Bunny on March 26 at the following locations (in the “Reserve” section for each location, click on the “Events” button and select “Bunny Cares”):

• Fox Valley
• Frontenac Plaza (Missouri)
• Hawthorn Mall
• Market Place Shopping Center
• Northwoods Mall
• Orland Square Mall
• White Oaks Mall
• Woodfield Mall (also hosting an event on April 2)

Reservations are limited. Visit the Bunny Cares website for a complete list of sites and to reserve your spot.

Many communities are also hosting sensory-friendly egg hunts and opportunities to meet the Easter Bunny. To find these events and other family-friendly spring activities, hop on over to our Special Events page.

Free virtual training sessions in English and Spanish for Division of Specialized Care for Children participants, their families and all who are interested

Navigating the health insurance maze can be frustrating.

We’ve heard our participant families’ feedback and want to help improve the process.

Please join the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) for our new education series on important health insurance topics.

These free, family-focused sessions will help you better understand your coverage and benefits.

Sessions are virtual and open to DSCC participants, their families/caregivers and anyone interested in these topics.

The DSCC Health Insurance Education Series is the result of DSCC families’ questions and suggestions from our Family Advisory Council.

Our Benefits Management and Research (BMR) team will explain a different topic and answer your questions each month. They will present each session in English and in Spanish via Zoom.

Save the date for each session:

• Understanding Your Insurance

  English: March 7, 6 p.m.
  Spanish: March 8, 6 p.m.

  This training will help you understand your health insurance. It will go over the types of insurance plans and some important words to know. You will also learn what to do if you have many insurance plans and how to find a doctor.

  Sign up for Understanding Your Insurance in English
  Sign up for Understanding Your Insurance in Spanish

• Medicaid Eligibility and Coverage

  English: April 11, 6 p.m.
  Spanish: April 12, 6 p.m.

  This training will help you learn about Illinois Medicaid programs. It will discuss who can have Medicaid and the programs for children and adults. You will learn what Medicaid covers and how to keep Medicaid coverage through the yearly redetermination process.

  Sign up for Medicaid Eligibility and Coverage in English
  Sign up for Medicaid Eligibility and Coverage in Spanish

• Insurance Appeals

  English: May 9, 6 p.m.
  Spanish: May 11, 6 p.m.

  This training will cover information on health insurance appeals. You will learn what to do if your insurance doesn’t approve a service. You will also learn more about the appeal process and how to write an appeal letter. Examples will be available.

  Sign up for Insurance Appeals in English
  Sign up for Insurance Appeals in Spanish

Details about each series session are also posted on our Events page.

Each session will be recorded. You can access the recordings and related materials on our Family Education Webinars page.

There is no cost for families to participate.

If you have questions before or after a session, please email dscc@uic.edu or fill out our Contact Us form.

We hope you’ll join us!

To celebrate Eloise turning 3, her family threw a “groovy” birthday party to provide comfort and treats for patients and their families at OSF Children’s Hospital of Illinois

Birthdays are major milestones in every child’s life. For families of children with rare diseases, they’re especially precious.  

Eloise was diagnosed with alobar holoprosencephaly when her mom, Rachel, was 20 weeks pregnant. This congenital condition causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).

“There are several types of holoprosencephaly and alobar is the most severe. We had no idea if she would be born alive or how long she would live,” Rachel said. “She spent 20 days in the NICU (neonatal intensive care unit) before going home on hospice just before COVID-19 hit.”

Her first birthday didn’t seem possible, let alone future birthdays. But Eloise defied the odds. The Division of Specialized Care for Children (DSCC) participant moved from hospice to palliative care. Eloise is now a feisty 3-year-old who brings joy to everyone she meets, Rachel said.

To celebrate Eloise turning 3 in November, her family planned a special birthday party to benefit the patients and their families at OSF Children’s Hospital of Illinois. The party, dubbed “Eloise Fest – Let’s Get Groovy,” provided plenty of treats and gifts from local businesses. The celebration also donated new sound machines to create a more calming setting for families.  

“The party was a way to give back and celebrate something we never dreamed possible,” Rachel said.

Eloise has spent time in nearly every pediatric unit of OSF Children’s Hospital. Rachel and her husband, Zach, got the idea for Eloise Fest when they noticed some of the hospital rooms didn’t have sound machines. 

“Eloise’s first and second birthdays we raised money for the Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations. This year we wanted to do something more tangible,” Rachel said.

“It may seem like a small thing but hearing the beeps and monitors all the time can be really stressful for families and patients. A sound machine helps provide calm by drowning out the medical stuff. During our stays, we usually set our machine on the ocean setting and it helps provide a sense of calm that’s hard to come by in a hospital. We wanted to help other families have that same sense of calm.”

Rachel and Zach worked with the hospital to find out how many sound machines each department needed. The couple then posted a wish list for their family and friends to buy 92 sound machines and related supplies. They fulfilled the wish list within three days.

“It was so touching to see how many people are impacted by Eloise’s story and are there supporting and loving her,” Rachel said.

Eloise’s “groovy” themed party also included her favorite music playlist and a VW bus photo station that traveled from floor to floor.  Local businesses also donated an array of food and non-food goodies for patients and staff.

“This has been three years we didn’t know that we would get,” Rachel said. “I’m grateful for the team that we have surrounding us that includes doctors who understand and all the support our friends, family and DSCC provides. How else would we have gotten here?”

You can see more photos from Eloise Fest and the list of local business donors on OSF Children’s Hospital’s Facebook page.

Read more about Eloise’s powerful journey on our Family Stories page.

The 2023 Illinois Miss Amazing program is accepting applications through Feb. 15.

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, self-confidence and self-advocacy skills.

Illinois Miss Amazing is now taking applications for its 2023 Amplify event on March 18 in Bolingbrook.

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

The Illinois Miss Amazing Amplify event activities include:

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

This year’s event also features a new category. Miss Amazing Mentor is for women ages 36 and older. Mentoring can include:

• Helping the younger Miss Amazing age divisions
• Assisting at your job
• Helping at events or with organizations you feel passionate about!

Miss Amazing Mentor participants will take part in the Amplify event interview, passion presentation and personal introduction.

The March 18 Amplify event is at the Bolingbrook Community Center, 201 Canterbury Lane, in Bolingbrook.

Illinois Miss Amazing is accepting applications until Feb. 15 or until all spots are filled.

The program is also accepting applications for volunteers who want to share in the experience. Visit the Miss Amazing website for details about volunteer options.

You can learn more about the Illinois Miss Amazing program and how it helped one of our participants set goals and pursue her dreams at https://dscc.uic.edu/dscc-participant-promotes-illinois-miss-amazing/.

Events feature sensitive Santa, holiday lights, craft activities and more!

Are you looking for sensory-friendly events that the whole family can enjoy this holiday season?

There are a number of sensitive Santa opportunities, festivals and other holiday activities going on across Illinois.

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

Here’s a look at some of the special programs available and other event guides for parts of the state:

• The Secret Sleigh Project coordinates volunteers to provide in-home Santa visits to children who are medically fragile nationwide. See our Secret Sleigh event listing for more details on how to request a visit.
• The National Federation of the Blind is offering letters from Santa and winter celebration letters in Braille to children who are blind or have low vision. The program is for children 10 years old and younger. Please complete the letter request form by Dec. 17. Letters are available in English or Spanish. If you have any questions, call (410) 659-9314, ext. 2236, or email education@nfb.org.
• The Santa Cares program from Autism Speaks and Cherry Hill Programs provides sensory-friendly Santa experiences in Illinois and the St. Louis area on Dec. 4. These visits are free. Keepsake photo packages will be available for purchase. Reservations are required. 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 may vary. Please check your location to confirm your date and time.)

• For families in the Chicagoland area, Chicago Parent magazine provides a list that includes opportunities to visit with Santa and other events tailored to the needs of children with disabilities.

• In central Illinois, check out this list from ChambanaMoms.com for events within driving distance of the Champaign-Urbana area or this list of seasonal light displays and events from the Mahomet Daily.
• SpringfieldMoms.org’s seasonal guide provides a roundup of activities happening in the capital city area.

• Southern Illinois residents can find many fun, seasonal activities on SI Families’ event calendar. It’s packed with ideas including a drive-thru Santa event in Marion, the Lights Fantastic Parade in Carbondale and even a “Home Alone” drive-in movie event at Murphysboro High School.
• The animals at the Lincoln Park Zoo, St. Louis Zoo, and other zoos throughout Illinois are celebrating the season, too! Contact your local zoo to find out what’s happening and when.

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

Happy Holidays!

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

Fowler Bonan Foundation, a southern Illinois nonprofit, worked with DSCC’s Marion Regional Office to provide shoes and clothing for participant Renesmae and her two younger siblings

Renesmae is an outgoing 5-year-old who loves unicorns. She recently started kindergarten with extra sass and confidence thanks to new unicorn outfits and orthotic shoes for the school year.

Renesmae and her two younger siblings received a free back-to-school shopping spree for these much-needed items and more from the Fowler Bonan Foundation.

Renesmae’s care coordination team from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) partnered with the foundation to make the special shopping trip possible,

“There’s a lot going on. With the kids starting school, we just didn’t know what we were going to do,” her mother, Misty, said during the shopping trip.

“Everyone at DSCC is really nice. They help with rides to the doctors and other things, but we never expected this. I can’t believe we’re shopping! It’s just above and beyond.”

A family in need

Renesmae has been a DSCC participant for most of her life.

“She had viral meningitis and severe seizures when she was 2 months old,” Misty said. “She has partial paralysis on her right side, can’t open her right hand on command or raise that arm very high, and limps or drags her foot when she walks. Thankfully, she hasn’t had any seizures in a while.”

Renesmae also has hypertonia, which makes her muscles stiff and difficult to move, and homonymous hemianopsia, a condition that causes her to see only one side of the visual field of each eye.

Misty describes Renesmae as “outgoing and not one bit shy.”

“She’s my absolute handful and, like the country song says, can be ‘t-r-o-u-b-l-e,’” she said. “She’s also a great big sister and is always doing stuff for her little brothers. She’s such a mother hen to Liam and Aries.”

Liam is an infant, and Aries is 3. Aries is now starting Head Start, a program that promotes school readiness.

Renesmae’s DSCC care coordination team includes Care Coordinator Cheryl Golliher and Program Coordinator Assistant Renee Woodson. They partner with Renesmae’s family to find treatment options, transportation to appointments and other services to help Renesmae thrive.

“The family let me know they needed help getting her orthotic shoes,” Cheryl said. “Renesmae wants to be like every other kid. The shoes look like any other pair of shoes but are different sizes and fit her brace. The shoes are an important part of keeping her focused on positive things, not other distractions.”

As Cheryl and Renee looked for options for Renesmae’s footwear, they learned all three siblings needed new clothes and shoes for the school year.

A local nonprofit ready to help

Our DSCC care coordination teams can help our participant families find community funding opportunities and resources to meet these important needs.

Amy Jones, DSCC Regional Manager for our Olney and Marion offices, and her team contacted the Fowler Bonan Foundation to see if they could help Renesmae’s family. The foundation provides clothing and shoes to low-income children through their Clothes for Southern Illinois Kids initiative.

“They agreed to help buy clothes and shoes for all of the children and asked that we join their volunteers to help the family shop,” Amy said. “We contacted the family and worked with the foundation and our team to get everything set.”

Bobbie Fox is a Fowler Bonan board member who began volunteering with the organization nearly two decades ago.

“My family was new to the area, and I worked as a store manager. Back then I did all the shopping for our families on my lunch break,” Bobbie explained. “Now, more people know about us and that we offer help in 17 counties throughout southern Illinois. We work with local organizations, community businesses, teachers and others to fundraise and make sure that every bit goes out locally to reach our families and help kids.”

 Time to shop

Everyone met at Walmart in Anna on July 20 for the shopping trip. The group included Renesmae’s family – her parents, Misty and Jerry, and little brothers, Liam and Aries – and Bobbie from the foundation and her daughter, Saylor.

Cheryl and Renee were unable to attend. Their teammate Jimmy Baldi, a DSCC Program Coordinator Assistant from the Marion office, volunteered to join the group and help shop.

The first stop was the shoe department. Mom and dad located the right sizes, but the kids had a tough time deciding with so many options to choose from. Renesmae selected Minnie Mouse sandals. Aries went with the Batman sneakers.

“We want to be sure that the kids have shoes and other essentials, such as socks and underwear, in addition to everyday clothes,” Bobbie explained. “The foundation typically provides $100 to $150 for each child to cover these needs.”

A team effort and “win-win for all”

Everyone did their part to help Misty and Jerry feel comfortable and find items the kids needed.

The group took turns hunting for unicorns and superheroes (Aries’ favorite), suggesting styles and finding the right sizes.

Everyone’s efforts were worth it. At the checkout, the kids were happy campers and Misty couldn’t believe they each had five new outfits for school along with plenty of underwear and socks.

Jimmy even snuck in some baby time with Liam.

“I’m really amazed and just so thankful to the foundation and everyone,” Misty said. “These will be hidden away until school starts so that they don’t get messed up.”

As the shopping trip ended, Bobbie exchanged high fives with Renesmae and got a big hug from Aries.

“It’s such a joy to be able to do this,” Bobbie said. “The focus on the kids, partnering with other organizations and individuals. It’s a team effort and a win-win for all.”

The Fowler Bonan Foundation also ordered Renesmae’s orthotic shoes.  Jimmy later traveled to the foundation’s headquarters in Harrisburg to pick them up. Cheryl delivered the shoes to the family.

What started as a team effort, ended as a team effort.

“The Foundation is a great resource and so quick to respond to the needs of our families,” said Cheryl. “The shopping trip helped relieve so much stress and worry for the family. It was a great team effort in every sense of the word. I hated to miss the shopping trip, but Jimmy volunteered to go and really loved going.”

We’re thrilled our Marion Regional Office team and the Fowler Bonan Foundation came together to support Renesmae’s family. A big thank you to Fowler Bonan for providing the generous shopping spree!

If you would like to volunteer to help the foundation or know of a family or child in need, please contact them at FowlerBonanFoundation@gmail.com.

You can see more photos from the shopping trip on our Facebook page.

UIUC’s School of Social Work recognized Amy Jones for her dedication and excellent learning experience for interns

Sruthi Thinakkal says her internship with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) shaped her as a social worker and taught her the meaning of true teamwork.

Amy Jones, Regional Manager of DSCC’s Olney and Marion regional offices, was an enthusiastic and motivating mentor throughout Sruthi’s experience.

Amy has now received the Outstanding Master of Social Work (MSW) Field Instructor Award for the summer 2021 semester. The honor is from the University of Illinois Champaign-Urbana’s (UIUC) School of Social Work.

“Receiving this award was such a nice surprise! I’m truly honored but never expected it,” Amy said.

The School of Social Work gives the award during each internship rotation to a field instructor who has provided exceptional teaching/mentoring for their MSW intern.

“Based on Sruthi’s nomination letter, it is apparent that (Amy is) dedicated to providing an excellent learning experience for the students, and the School of Social Work is very appreciative,” MSW Field Director Lindsey Trout said in an email announcing the award.

Sruthi nominated Amy for the award after spending two semesters with DSCC’s Marion and Olney offices in 2021. (You can read more about how Sruthi’s internship provided life-changing experiences and lessons.)

“It had been a little while since I’d submitted the nomination, and I’ve been so busy that I completely forgot,” Sruthi said. “It made me so happy! I could go on and on about how Amy shares information and is always willing to help others. It was such a nice surprise, but I just knew she would win!”

Sruthi now works in Chicago with the Rush Craniofacial Center team. She credits her internship with preparing her for a job she loves.

“I gained so many skills that have directly impacted my career,” Sruthi explained. “DSCC taught me so much about working in tune with families, the grief process, the importance of teamwork and listening, and how a monthly call can make such a difference in helping families feel supported and connected.”

Amy says interns aren’t the only ones who benefit.

“It’s a mix of seasoned and new that brings fresh ideas and different perspectives to the workplace,” Amy said. “It’s exciting to watch their growth and know that they’re building a ‘toolbox’ of skills that will serve them well as they move on in their careers. It’s equally rewarding learning from them along the way.”

The Olney and Marion regional offices have recently welcomed two new interns to their team.

“I’m looking forward to learning as much from them as they will from us,” Amy said. “I enjoy being able to talk about the world of social services and sharing about DSCC but It’s really a team effort. All of us work to partner with our families, to help them know about and connect with the services they need.”

Amy’s award has a place of honor in her office – and in her heart.

“The award isn’t just mine. It’s for all of us.”

Congratulations, Amy, on your well-deserved honor!

Individuals facing mental health crises can call 988 anytime for help and life-saving services

Starting on July 16, a simple three-digit number will connect anyone in the United States to the National Suicide Prevention Lifeline (also called the Lifeline).

The new 988 dialing code will help people facing mental health crises immediately connect to individuals who are specially trained to respond to such situations. It is available for calls (multiple languages) and text or chat (English only).

The Lifeline is free, confidential and available 24 hours a day, seven days a week.

Lifeline crisis counselors understand what callers are going through and know what local resources might make a difference. Anyone who needs support for a suicidal, mental health and/or substance use crisis may dial 988.

The new 988 number aims to strengthen efforts to transform crisis care nationwide. It will serve as a universal entry point so that no matter where someone lives, they can reach a trained crisis counselor who can help.

According to the Centers for Disease Control and Prevention, one in five Americans will have a mental illness in any given year.

The Substance Abuse and Mental Health Services Administration (SAMHSA) reports that in 2020 the United States had one death by suicide about every 11 minutes. Suicide is also a leading cause of death for people ages 10 to 34 years. Additionally, more than 100,000 individuals died from drug overdoses from April 2020 to 2021.

You can learn more about how 988 works and the support it provides on the 988 Frequently Asked Questions page.

This fact sheet also explains the basics about 988. (You can also see the fact sheet in Spanish.)

The current Lifeline phone number of (800) 273-8255 will remain available to people in emotional distress or suicidal crisis, even after 988 is launched. 

Individuals may also continue to text the Crisis Text Line (text HOME to 741741). Both offer free, confidential help around the clock, 365 days a year.

You can also visit our online Resource Directory for more mental health services and support.

PLEASE NOTE: As of spring 2024, the Co-Op Program is no longer accepting new students.

Are you interested in going to college this fall?

The University of Illinois Chicago (UIC)’s Co-Operative Career Experience Certificate (Co-Op Program) could be a good fit.

This new certificate program aims to help students with intellectual and developmental disabilities achieve competitive careers in the community.

The Co-Op Program will prepare students through inclusive classes and community work placements. It is designed to support students who may not be able to access post-secondary education in traditional ways.

UIC’s Department of Disability and Human Development is now accepting applications to the Co-Op Program for the fall 2022 semester. The deadline to apply is July 13.

Students in the program earn undergraduate credits from UIC’s Department of Disability and Human Development. Participants have an academic transcript just like any other UIC student.

Co-Op staff members are available to help students get the accommodations needed to complete assignments and take classes alongside other UIC students.

In addition to learning in the classroom, students in the Co-Op Program will build skills through practical work placements in the community.

The combination of classroom and on-the-job experience helps students network and create a path toward career opportunities after certificate completion in:

• Arts and culture
• Social justice and advocacy
• Health and care across the lifespan

Students must complete a total of 36 credit hours to complete the program.

To be eligible for the Co-Op program, applicants must:

• Be a high school graduate
• Be 18 years old or older
• Have a diagnosed intellectual or developmental disability

For more information about the program, admission and costs, visit the Co-Op Program website.

Interested Co-Op applicants must use the program’s specialized application form to apply.

If you need help with the application process, the Co-Op team can assist in several ways:

• Sign up to attend the Community Webinar on June 24 at 12 p.m. (The webinar will be recorded and posted on the Department of Disability and Human Development’s YouTube Channel to watch later).
• Contact the Co-Op team with any questions at DHDCoOp@uic.edu.
• Check out The Co-Op Program Facebook page for regular updates and information.

Helpful information and tips to find formula and keep children healthy

The infant formula shortage continues to affect families across the country.

Formula is not only important for babies’ nutrition but also for some young children, teens and adults with medical needs.

Several resources are available nationwide and here in Illinois to help families during the shortage:

• The U.S. Department of Health and Human Services (HHS) website has resources in a variety of languages to help families find infant formula during the shortage. These resources include information on safe substitutes, formula company contacts and community programs.
• The Illinois Department of Human Services (IDHS) has trained caseworkers to help families with formula questions. You can contact the IDHS Help Line at (800) 843-6154. The Help Line is primarily for Supplemental Nutrition Assistance Program (SNAP) and Women, Infants and Children (WIC) participants but is open to all Illinois residents.
• For Illinois WIC participants, a waiver now allows for flexibility in the size and type of formula available to buy with WIC benefits. More details are on IDHS’ “Having Trouble Finding Formula” page.
  • Illinois WIC programs also provide a wide range of support for breastfeeding mothers and funds for healthy foods, including fresh fruits and vegetables. More information and updates can be found on the Illinois WIC website. Families can also call (217) 782-2166 for additional support
• HealthyChildren.org, the parenting website of the American Academy of Pediatrics, provides tips on finding baby formula during the shortage and what you may safely consider if you can’t find any. The site is updated regularly with helpful information and the latest guidance.
• The U.S. Food and Drug Administration (FDA) has released information on the international formulas that will soon be on store shelves in the United States. Some of these formulas have different mixing guidance and will require conversion from milliliters to ounces. The FDA has a “Tips for Preparing Imported Infant Formula” handout available to help. (The handout is also available in Spanish.)

Remember that you should not water down your baby’s formula to stretch it out. You also should not make formula at home or discard formula unless it is expired or part of the recall.

HHS notes that in most cases, you can feed your baby any brand of formula that is available.

If your child has special health needs, be sure to check with their doctor about medically appropriate and safe feeding alternatives. Your doctor may have samples in stock or know of other local organizations that can help.

Please contact your pediatrician for guidance on adjusting feeding practices and be sure to stay in touch about any issues or concerns with your child’s nutrition.