The Institute for Parents of Preschool Children Who are Deaf or Hard of Hearing is canceled due to the COVID-19 pandemic.

We are sorry to announce that this year’s Institute for Parents of Preschool Children Who are Deaf or Hard of Hearing is canceled.

This decision follows the Governor’s executive orders to keep schools closed, keep people home, maintain social distancing and promote public health during the coronavirus (COVID-19) pandemic.

The Institute is a one-week program for parents of children ages 5 and under who have a significant hearing loss. It takes place on the campus of the Illinois School for the Deaf in Jacksonville each June.

Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.

Although we cannot gather in person, parents can still access presentations from the Institute’s experts.

As a supporter of the Institute, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has made these presentations available online so they can benefit more families of children with hearing loss.

Videos on each topic are posted on the Illinois Sound Beginnings website.

Parents and caregivers can watch each presentation at their own pace in the comfort of their own home.

We will announce details for next year’s Institute after organizers determine a date.

If you would like more information about the Institute, call us at (800) 322-3722 or email Institute@exchange.dscc.uic.edu.

The Johnson family donated 160 Easter baskets for children at Central DuPage Hospital, surpassing their goal despite the coronavirus outbreak

Andrea Stambaugh vividly recalls the disappointment she felt when her son, Axel Johnson, was in the pediatric intensive care unit on Easter weekend 2018. 

There would be no coloring eggs, Easter egg hunts, or other favorite family celebrations.

“I was feeling like a failure because I didn’t have an Easter basket beautifully wrapped and thoughtfully hidden here for Axel to see on Easter morning,” Andrea wrote on her Facebook page, “Axel’s Journey with CMV.” “Then, as the lights turned down in the hallway and it grew quiet, I heard a family in the hallway praying. Praying not for Easter baskets and a chance to color eggs, but for life.”

The moment immediately changed her perspective. Andrea vowed to offer love and support to such families who can’t be home making memories with their children.

For the last two years, the Johnsons have collected donations to fill Easter baskets for hospitalized children. Despite unexpected challenges from the coronavirus outbreak, the family surpassed this year’s goal and delivered 160 Easter baskets to Central DuPage Hospital in Winfield.

“We know the burden and the mom guilt that people feel when they can’t provide their kid a proper holiday. We know that that’s a lot of stress and a lot of burden and frankly, the families are dealing with a lot of other things if they’re in the hospital,” Andrea said. “They shouldn’t have to feel that pressure, so we’re here to make sure that’s relieved from them and that they can focus on healing for their child.”

Axel is 3 years old and a participant in the University of Illinois at Chicago’s Division of Specialized Care for Children program.

After his Easter hospitalization, Andrea researched information from other organizations who coordinate Easter basket donations. She put together a list of suggested items, including coloring books, puzzles, dolls and action figures. She then asked her page followers for donations.

The Johnsons hoped to collect enough items for 25 baskets for Easter 2019. Donations far exceeded this goal. A team of volunteers helped them put together a total of 125 baskets for children at multiple Chicago-area hospitals.

This year, the Johnsons aimed to donate 150 baskets. They set up an Amazon wish list for Easter basket items, and donations started to pour in. But challenges soon arose as the coronavirus outbreak escalated. For safety reasons, two hospitals could no longer accept donations for patients.

Central DuPage Hospital could accept the baskets if the Johnsons followed strict safety precautions.

“We have an immunocompromised child, so we know about the importance of keeping the children and the families safe during this time,” Andrea said.

Every Easter basket item was purchased new and cleaned with bleach spray or a sanitizing wipe. Andrea and her partner, Adam Johnson, wore gloves and masks while sorting the items and wrapping the baskets with cellophane and personalized notes.

Due to the pandemic’s social distancing requirements, Andrea and Adam spent 16 hours packaging 160 baskets without their usual team of volunteers.

Last weekend, they delivered the baskets to Central DuPage Hospital in Winfield to be ready for patients on Easter Sunday.

“It makes our hearts really happy every year when we get to see the finished product and all of the kids that will be blessed this Easter,” Andrea said.

The family is also already planning to provide baskets to more hospitals next Easter.

For more information about their project and Axel’s condition, visit “Axel’s Journey with CMV” on Facebook.

Instructions for safely cleaning and re-using supplies for technology-dependent children.

Adequate medical supplies are essential for families caring for children who are medically fragile and technology-dependent at home.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) wants to make sure our participant families can keep their supplies properly stocked through the coronavirus disease 2019 (COVID-19) outbreak.

We’ve compiled guidance and instructions to help families safely clean and re-use supplies in case there’s a future shortage. *Please note you should check with your child’s care team to make sure these guidelines are appropriate for your child.

The DSCC Guidance on Home Medical Supplies includes instructions for cleaning and re-using:

• Feeding supplies
• Suction supplies
• Tracheostomy supplies
• Ventilator equipment
• Nebulizer equipment

*Again, please check with your child’s care team to make sure these guidelines are appropriate for your child.

The guidance is available on our Home Care Information and Resources page as well as in our list of COVID-19 resources and supports for families.  

Our Care Coordinators are also available to discuss strategies and help you become prepared and well-equipped for your child’s care in the weeks and months ahead.

Please reach out to your local regional office or call us at (800) 322-3722.

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.

We’re here to help participants and their families plan and take the proper precautions with their medical supplies during the COVID-19 outbreak.

Many families enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) rely on medical supplies for their child’s care.

Now is a good time to plan for how to keep your supplies properly stocked through the current coronavirus disease 2019 (COVID-19) outbreak.

We suggest you reach out to your child’s medical provider about how to safely reuse and/or make supplies last longer. This information can help you act in the best interest of your child in case there’s a need to conserve medical supplies in the future.

We also recommend asking your provider about getting extra necessary medications to have on hand or using a mail-order option.

Your DSCC Care Coordinator is also available to discuss strategies and help you feel prepared and well-equipped for your child’s care in the weeks and months ahead.

Please reach out to your local regional office or call us at (800) 322-3722.

DSCC taking steps to protect our participants, their caregivers and our staff, including suspended home visits and limiting office visitors.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has an important update about the coronavirus disease 2019 (COVID-19) pandemic. 

We want you to be aware of some p​recautions we are taking to protect our program participants, their families/caregivers and our DSCC team.   

We are limiting visitors in our office until the guidance changes.  We feel this step is necessary to protect the participants of our program and our staff.

If you arrive at one of our offices, you will be asked to call to tell us more about how we can help you.  

We are also suspending home visits or other face-to-face visits until the current situation improves. 

DSCC Regional Offices plan to remain open.  If we have to close an office, we will still have staff available through our other DSCC locations who can help you get the care you need. 

Since the guidance on ways to slow the spread of coronavirus is evolving, please watch our website for continued updates.  

Our DSCC team remains committed to our mission to partner with Illinois families and communities to help children and youth with special healthcare needs connect to the services and resources they need.

We appreciate your patience and understanding as we all do our part to help slow the spread of the coronavirus.  

Be well!

Families can watch video presentations from experts in the field on a range of topics affecting children who are deaf or hard of hearing.

The Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing is a one-week program for parents of children ages 5 and under who have a significant hearing loss.

It takes place on the campus of the Illinois School for the Deaf in Jacksonville each June. Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.

Lecture topics include:

• Individuals With Disabilities Education Act (IDEA)
• Advocacy
• Communication Options
• Language
• Assistive Listening Devices
• Literacy
• Amplification

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC), a supporter of the Institute, is making these presentations available online so they can benefit more families of children with hearing loss.

Videos on each topic are posted on the Illinois Sound Beginnings website.

Parents and caregivers can watch each presentation at their own pace in the comfort of their own home.

If you are interested in participating in the next Institute or would like more information, call us at (800) 322-3722 or email Institute@exchange.dscc.uic.edu.

You can also visit our Events page for more details about the 2020 Institute.

You may also read a recap of the 2019 Institute at https://dscc.uic.edu/institute-provides-support-connection-for-dscc-families-of-children-with-hearing-loss/.

DSCC Program Coordinator Assistant Lisette Rios draws from her own family’s experiences in the program to connect with other families.

In 22 years, Lisette Rios’ life has truly come full circle.

Born with a cleft lip, Lisette grew up as a participant of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

“I remember my mom talking on the phone a lot to my Care Coordinator, who would always ask how I was doing,” Lisette said.

DSCC helped the Rios family find medical specialists, discuss treatment options, coordinate surgeries and ensure Lisette and the family’s overall needs were met.

Now as a DSCC employee herself, Lisette is that helping hand and voice of comfort for other families like hers.

“My mom likes to say it’s a full circle for me. It was meant to be,” she said.

True to her dream

For as far back as Lisette can remember, DSCC was a part of her life. Shortly after her birth, her pediatrician referred the Rios family to DSCC.

“I think my parents were probably very overwhelmed. I was the first-born and there were a lot of issues, and they didn’t know what was going to happen. The fact that my pediatrician told them about DSCC helped a lot,” she said.

Lisette required at least eight surgeries throughout her childhood until age 12. She particularly remembers DSCC helping her family navigate her orthodontics issues and finding a specialist who could address them.

The family’s Care Coordinator would also check in about Lisette and her goals for the future. Around age 12, she decided she wanted to become a social worker.

“My mom told my Care Coordinator that, and my coordinator said, ‘Maybe she can come work with us,’” Lisette recalled. “After I got my internship, I joked with my mom that I’m coming for this position I was promised.”

Lisette stayed true to her dream.

After high school graduation, she double majored in sociology and criminology at UIC. When it was time to look for internships, she reached out to DSCC.

“On the other side”

Lisette started an internship in the Chicago Core Regional Office during the fall 2018 semester.

“I think seeing how much DSCC helped my family made me want to do social work. I want to help people and I want to make things better or try to find solutions to things,” Lisette said.

“You’re already dealing with so much when you have a child born with a health condition. It’s already a lot of emotions for the family and then to try to figure everything out on your own – that’s a lot. I want to be on the other side trying to reassure families and help them.”

Lisette called her DSCC internship a wonderful experience. She learned how to read medical reports and the steps necessary for families to apply for DSCC’s assistance. She also learned how to communicate with families and help them identify their needs.

Care Coordinator Rita DeSoto was Lisette’s supervisor during the internship. Rita admired how quickly Lisette learned her job role and her willingness to do hands-on work.

After her internship ended, Lisette graduated in December 2018. Since DSCC had no job openings at the time, she looked elsewhere for employment.

A few months later, a job in our Chicago Core Office became available. Lisette applied and in August 2019, DSCC hired her as a full-time Program Coordinator Assistant (PCA).

In this role, she makes sure families complete the necessary paperwork for DSCC to communicate with their providers, provide financial assistance and so on. She also takes calls from families about any needs or problems that arise.

“It’s being there for someone to let them know you understand, you know what’s going on and that one way or another, we’ll figure it out if there is a problem,” she said.

“Here to help”

Lisette serves as a PCA for six Care Coordinators, including Rita, her former internship supervisor. Rita praises her communication skills and work ethic.

“I am so grateful to currently have her as my PCA teammate, she really does an outstanding job and goes above and beyond,” Rita said. “Lisette is a great asset to the Chicago Core team and we are very happy to have her with us. She is on her way to great things.”

Lisette said she often draws from her own family’s experiences to relate to other DSCC families. Many families she works with are more hopeful once they learn Lisette is a former participant herself.

“I want families to know that we’re here to help out throughout the process. It’s not just you and your child having to deal with this. There are resources, and I am here to help you,” she said.

Looking ahead, Lisette would like to earn her master’s degree in social work and advance positions at DSCC.

She encourages current DSCC participants to take ownership of their care and the necessary paperwork and to be persistent with their goals.

“No matter what your condition is, you can live a so-called normal life,” she said. “Nothing is really out of reach.”

Public input needed for maternal and child health survey

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) wants to hear from you.

We invite Illinois residents to fill out a quick, anonymous survey about the needs of women, infants, children and families across the state.

Your input will help us better understand the health challenges facing Illinois communities. It will also help us determine how new programs and services could help meet communities’ needs.

The survey takes about 10 minutes to complete. Responses are anonymous and confidential. You can click on the English survey link or the Spanish survey link to complete it online.

We are working with the Illinois Department of Public Health to collect survey responses.

This feedback will help guide the work of the Illinois Maternal and Child Health Services Title V Program over the next five years.

We will collect responses through the end of March 2020.

Email DPH.MCH@illinois.gov with any questions about the survey.

We hope to hear from you!

DSCC continues to provide care coordination services and support for affected families.

Illinois children with special healthcare needs who receive Medicaid are now enrolled in managed care.

Managed care is a type of health insurance program. When you enroll in managed care, you become a member of a health plan. HealthChoice Illinois is the new managed care program that is now required statewide.

The Illinois Department of Healthcare and Family Services (HFS) moved children with special healthcare needs into a HealthChoice Illinois health plan on Feb. 1.

This transition affected participants enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) who both:

• Receive Medicaid and
• Do not have private health insurance

DSCC staff is working with HFS and its partners to continue our care coordination services for DSCC families now enrolled in a HealthChoice Illinois health plan.

We are developing contracts with each HealthChoice Illinois plan so families continue to receive the right support for their unique needs and goals.

We will share more information about our partnership with each HealthChoice Illinois health plan once contracts are complete.

DSCC staff is here to help affected families with any questions about your new health plan.

You may contact your local DSCC regional office or reach us at (800) 322-3722 or dscc@uic.edu.