“The help DSCC provides is more important now than it’s ever been.”

Division of Specialized Care for Children (DSCC) Medical Advisory Board Chair Dr. Stephen Bash is a “Hoosier” born and raised.

He attended college and medical school at Indiana University. While doing his rotation at Riley Children’s Hospital in Indianapolis, he fell in love with pediatric cardiology.

“I had completed one year of training, but it takes two years to be board certified for pediatric cardiology,” Bash explained. “I had to make a decision to either continue my training or join my dad at his practice.”

He joined the practice and got hands-on experience treating children with many kinds of complex healthcare needs.

Bash was partially trained and was one of only three pediatric cardiologists in the state of Indiana. For 11 years, he referred his patients, who came from multiple states, to the two specialists he had trained with at Riley Children’s Hospital.

Bash was 40 years old when his dad started to retire.

“So, I figured it was time for a new wife, a Porsche or to go back into a training program,” Bash joked. “I kept my wife, never got a Porsche and completed my training to become a board-certified pediatric cardiologist. Most people do it the other way around, but I completed my academic training after being in private practice for more than a decade as a pediatrician.”

Bash, his wife, Patti, and their four children moved to Houston so that he could finish his fellowship requirements and complete an extra year of heart catheterizations at Texas Children’s Hospital.

Where’s Peoria?  

At age 42, Bash was in the job market and fielding offers. Dr. William Albers at OSF Saint Francis Medical Center invited him to Peoria.

“I was invited to visit numerous places around the country. We had Peoria at the bottom of the list,” Bash said. “Patti and I decided we would keep an open mind, look around and talk to people before making our decision. “

The Bashes toured Peoria and found there was a lot to like. He joined OSF Saint Francis Medical Center, where he helped start the Congenital Heart Clinic and connected with DSCC.

“I initially started with DSCC evaluating and accrediting congenital heart program centers in Illinois,” said Bash. “I quickly realized that these centers of excellence were only one piece and began to connect with the other subspecialists in the state.”

It was Dr. Bash who had the dream of starting the Children’s Hospital of Illinois. The hospital eventually grew from 15 pediatric subspecialists in 1985, when he joined the pediatric cardiology group, to 150 pediatric subspecialists. It also underwent a $283 million project that included building a new facility.

In 1986, as Peoria was taking on this project to grow The Children’s Hospital of Illinois, Dr. Albers stepped down from chairing DSCC’s Medical Advisory Board (MAB). He asked Bash if he would like to join the board.

Bash accepted and has been serving in many ways since.

“I will continue to help”

The MAB is a diverse group of healthcare professionals. Each offers a unique perspective on how DSCC can enhance our care coordination services for children with special healthcare needs.

“Over the years I’ve worked with all kinds of subspecialists. I’ve also seen what the families have to go through,” explained Bash. “DSCC’s (program) is the only one that coordinates care statewide and helps steer these families through a confusing maze of insurance changes, seeing all kinds of specialists and understanding their treatment options. The help DSCC provides is more important now than it’s ever been.”

Knowing the many challenges medically complex children and their families face, Bash has focused on breaking down silos and building lasting connections to improve care.

“I began connecting with other doctors and providers in the state. Just like DSCC covers the entire state, Peoria’s pediatric cardiology clinic outreach is also wide-ranging,” Bash said.

“Even if we were competitors, we could still cooperate. For example, OSF could refer transplants to Chicago or St. Louis. Silos don’t work for the families, so creating lasting partnerships to help these families has always been at the forefront.”

Bash said he has always tried to make serving on the board personal because “what you see in a clinic or the hospital isn’t the same as visiting a family in the home.”

“Visiting these families in their homes gave me a much different picture of what they were going through. It was very humbling and not something you will get from your hospital clinic experience. Now, DSCC is there to help these families coordinate care.”

The University of Illinois Board of Trustees appoints DSCC’s Medical Advisory Board members for a three-year term. The MAB membership currently includes pediatric specialists in cardiology, rehabilitation, plastic and reconstructive surgery, neurology and more.

“I am so impressed by our members and all that they do,” Bash emphasized.

“The amazing parent, specialist and staff presentations to the board continue to help us learn about and better understand the different specialties, the many pieces involved in getting and providing care and the ways we can help impact making the services these families need available. We volunteer because we love what we do, and the need is so great.”

Dr. Bash retired from OSF three years ago and continues to enjoy leading the MAB.

“I feel like I’ve lived in the best age of medicine for any physician,” said Bash.

“From the development and mass production of penicillin to the eradication of polio, to the amazing procedures now being done in pediatric cardiology, we’re now doing cardiovascular surgery that I never thought would be possible in such tiny hearts,” he said.

“I’ve had a fabulous career, and DSCC has been an important part of that. There is no question that the needs of these families are very complex. As long as DSCC allows me to, I will continue to help.”

Thank you for your exceptional service, Dr. Bash!

Visit our Medical Advisory Board page to learn more about the MAB and its mission.

A DSCC mom and her friend started the Facebook group to connect with other parents of children with special needs

Thanks to an outing at a coffee shop, hearing aids and an impromptu conversation, two moms with children of similar ages and needs connected.

“I saw her daughter’s hearing aids. My son has them, too, so I just started talking to her,” Lace Mandrell said of her first meeting with Bailey McBurney Imig.

In no time Lace and Bailey were texting, talking and sharing tips, concerns and road trips to specialists.

Their immediate connection led to a new Facebook group called “Monthly Mama Therapy.”

Monthly Mama Therapy aims to help central Illinois caregivers of children with special needs connect with and support one another.

“If you’re trying to understand a diagnosis or therapy, running from appointment to appointment or saving for the next piece of equipment, things can be challenging,” said Lace “We just thought that having a network of moms with a wide range of experiences, ready to back you up on the good days and the bad days, would be amazing.”

Lace is the mother of two sons, Ollie and Auggie. Auggie, 3, is bilaterally deaf and has had cochlear implant surgery. He also has Chiari Malformation and was diagnosed with Waardenburg Syndrome.

“He’s a wild child who rarely stops moving,” Lace said. “He’s sweet, inquisitive and a little sponge excited about learning and soaking up everything around him.”

Auggie is a participant in the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). He has been enrolled with DSCC since 2019.

Bailey McBurney Imig is also the mother of two: Paxton, 3, and Parker, 2 1/2. Parker is deaf and has undergone multiple screenings and tests. There is still no diagnosis for her other conditions.

“With all of the testing and so few answers, I feel like she’s probably that one in a million child who will have a diagnosis named after her,” Bailey said. “But, despite all her complications, Parker is a tiny, little bundle of joy who loves attention. She’s an easy-going cuddler who is almost always happy and smiling.”

During their first meeting, Lace and Bailey related to each other right away.

“We just hit it off and I’m so glad. With HIPAA (the Health Insurance Portability and Accountability Act) and concerns for privacy, it can make it hard to connect. Then COVID-19, online therapies and everything else got thrown in,” said Lace. “It’s hard to do this stuff alone. It can get really complicated and overwhelming.”

The more Bailey and Lace talked, the more they wanted other moms in the “same or similar boat” to have a safe space where their kids could connect and they could relax, share and recharge. The seed for Monthly Mama Therapy was planted.

Monthly Mama Therapy has a private Facebook page and hosts meet-ups at local parks, coffee shops and other venues in the Champaign and Bloomington areas. Conversations online and in-person may range from accessible parks and walking trails to experiences with therapies or the transition to school.

The group promotes “therapy” and the importance of caregivers taking care of their own needs, too.

“The online community is really growing. When someone asks a question, the support and responses have been great,” said Bailey. “Our ultimate goal is to build an in-person community that’s just as strong.”

Monthly Mama Therapy hopes to continue growing online and meeting in person when the weather turns cool at central Illinois locations where distancing is possible.

“Our wish list includes adding some veteran parents who are willing the help the ‘newbies’ navigate and prepare for the transitions ahead,” said Lace. “We’d also love to add activities like exercise or yoga to do together.”

For more information, visit the Monthly Mama Therapy Facebook page.

Foundation provided financial gifts to support the needs of eight DSCC participants throughout 2020.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) works with many community organizations and nonprofits to help children with special healthcare needs and their families.

Late in 2019, the Sports for Kids Foundation offered to provide funding to some of our participant families in need.

After working with our Chicago Regional Office staff, Sports for Kids supported the needs of eight DSCC participants and their families during 2020.

“We are extremely grateful that Sports for Kids contacted us and offered their foundation’s support to our participant families,” DSCC Executive Director Thomas Jerkovitz said. “This financial support helped improve the quality of life for each child and family who received it.”

The Sports for Kids Foundation’s financial contributions to DSCC participants included:

• Funds to help a family pay their share of the balance for a new carbon fiber prosthesis for their child. The child’s previous prosthesis was heavy, bulky and not a good fit for the child, causing pain and discomfort. The new prosthesis will help the child take part in sports and other physical activities she enjoys.

• Emergency funds to cover a participant family’s urgent need for over-the-counter medication, clothing, groceries and transportation. The parent was living in temporary housing and unable to work as she cared for her child’s rare progressive genetic disorder.

“During these unprecedented times, we are heartened to know that such caring organizations exist,” Jerkovitz said.

The Sports for Kids Foundation began in 1989 in Omaha, NE, according to Al Vacanti, co-founder and auction coordinator.

Before then Vacanti practiced law in Omaha and was an aspiring sports agent for professional athletes.

“I had modest success at it and in the process, I made some contacts, mostly in the NFL and pro football,” he said.

Those contacts led him to his involvement in a softball tournament that benefited March of Dimes in Omaha. That tournament led to talk about starting a sports memorabilia auction to create a general fund for children with special healthcare needs.

The Sports for Kids Foundation was born and began holding annual auctions of sports memorabilia. Proceeds from the events go to support Sports for Kids’ mission to assist children with special needs and their families.  

Foundation members either hear directly from families in need or seek organizations that serve children with special healthcare needs.

In addition to helping children in Nebraska and the Chicagoland area, Sports for Kids provides financial gifts to children throughout the United States.

The foundation’s funds have helped support a variety of needs for eligible families, including:

• Paying for or supplementing the cost of a piece of equipment, such as an adaptive bicycle

• Covering the costs for a family in a rural community to travel to a city for their child’s treatment

• Paying for a special camp or recreation program

“I would imagine we’ve given close to 1,000 financial gifts over 30 years,” Vacanti said. “There has to be a financial need. And there can be insurance there, but there are many situations where families still have large out-of-pocket expenses (for their child’s needs).”

Sports for Kids was able to hold its 30^th auction shortly before the COVID-19 pandemic shutdown occurred.

Vacanti said the foundation is hoping to hold its next auction sometime later in 2021 and continue its tradition of providing much-needed funds for children with special needs.

The Illinois Department of Public Health gives recommended guidance for preventing the spread of COVID-19 in medically fragile children.

The Illinois Department of Public Health has provided guidance for how to prevent the spread of the coronavirus disease 2019 (COVID-19) in medically fragile children.

The guidance includes:

• Planning actions for the home healthcare agency during a disease pandemic
• Preventative actions for the introduction of respiratory germs into your home
• Preventative actions for the introduction of respiratory germs within your home
• Preventative actions for vulnerable populations
• Contingency planning

The guidance is available in our COVID-19 resource list and at this direct link to the guidance document.

Meals, financial help, health tips, condition-specific information, learning tools and more to support families of children with special healthcare needs.

Parents and caregivers have a lot to juggle as they care for a child with special healthcare needs amid the coronavirus disease 2019 (COVID-19) outbreak.

The uncertainty and required social distancing can pose unique challenges, questions and concerns.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC)’s team of professionals is here to help.

We’ve compiled a list of resources to help families find the right support: https://dscc.uic.edu/browse-resources/covid-resources/.

The list includes places offering free meals, utility assistance, free Wi-Fi, health tips, educational websites, activities during social distancing and condition-specific information.

Resources are also broken down by our regional office locations.

We’ll continue to update this list as new resources become available. Please check back often for the latest information.

If you have a resource to add to our list, please email us at dscc@uic.edu.

The count helps support key programs and services for children and families.

Every 10 years, the U.S. Census Bureau counts all people in the United States. This count determines how much federal money is available for services and programs for children, including those with special healthcare needs.

By filling out the 2020 census form, parents can help ensure their children have the resources they need.

In March, the government will send every household a letter in the mail. This letter has instructions on how to fill out the census form.

The form asks for a count of everyone living at the address as of April 1, 2020. The count should include babies, young children and children with special healthcare needs and disabilities.

During the 2010 census, nearly one million young children were not counted, according to the Association of Maternal and Child Health Programs (AMCHP).  

If young children are not counted in the 2020 census, the following programs could lose funds:

• Medicaid
• Children’s Health Insurance Program
• Supplemental Nutrition Assistance Program (SNAP)
• Title I funding
• Individuals with Disabilities Education Act (IDEA) special education funding
• Head Start
• Childcare and Development Block Grants

States and communities also use census data to fund and develop programs and services for children and families.  

All census responses are confidential. Your answers are not shared with anyone and are only used to count the number of people in the country.

AMCHP provides a 2020 census fact sheet for parents. (A Spanish fact sheet is also available.) It explains how the census works, how young children should be counted and confidentiality.

The U.S. Census Bureau also provides helpful resources for parents:

• Census 101
• Counting Young Children
• 2020 Census Safety and Security

You can also watch the Census Bureau video below: