DSCC’s updated Family Advisory Council makes it easier for families to take part and share feedback.

Feedback from our parents and participants is important to us at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

We have updated our Family Advisory Council (FAC) setup to make it easier for families to take part and share their input.

The FAC’s mission is to bring together families and our staff and leadership to promote the delivery of participant and family-centered services.

Our updated council will connect families to resources and provide guidance to strengthen our teamwork, improve communication and empower families to have a voice in their child’s care.

Our Family Advisory Council will consist of 15 family members and two DSCC staff members. Members must agree to a one-year commitment with an option to stay for a second.

The FAC will meet in person twice per year. Meeting locations will include Springfield, Chicago and southern Illinois.

We plan to hold a virtual meeting in September 2020. We will hold two more virtual meetings per calendar year via telephone or video.

FAC members will receive $100 per face-to-face meeting with travel reimbursement, lodging fees and per diem included. Members will receive $50 per virtual meeting.

Family engagement is essential for a successful Family Advisory Council. FAC members will have a shared responsibility to facilitate meetings and keep participant- and family-centered values at the forefront of discussions.

We ask that FAC members not only attend scheduled meetings but also share ideas, provide feedback and give support to other members. These are crucial components for a strong and productive committee.

Eligible FAC members must:

• Be a family member of a current or former Core or Home Care program participant
• Have knowledge of and interest in improving systems of care for children with special healthcare needs
• Have time for quarterly meetings
• Can travel to the regional hub for face-to-face meetings

Please contact Adell Scott (adells@uic.edu) or Claire Richardson (clairer3@uic.edu) if you have any questions or recommendations. You may also reach them by phone at (217) 558-2350.

DSCC provides memory booklet for children and families to complete together during the pandemic.

From school closings to parents suddenly working from home, the coronavirus (COVID-19) pandemic has drastically changed Illinois families’ way of life over the last two months.

To help children express themselves and record their experiences during the Stay at Home Order, we’ve created our own COVID-19 Memory Book that families can print out and complete.

The book includes an “About Me” section for children and youth to fill out as well as their favorite ways to stay busy, what they are thankful for, how they’ve stayed connected with others and a list of celebrations that happened during social distancing. There’s also a page for children to fill out if they celebrated a birthday during the pandemic.

The back page includes information about the COVID-19 resources compiled by the Univesity of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). The resources include links to more at-home learning opportunities and activity resources for families.

Click on the COVID-19 Memory Book link to print the PDF.

The book is also available in Spanish.

Mandy Nicolaides is raising awareness about her son’s severe speech and communication disorder.

Mandy Nicolaides thought her son may never speak.

At 3 years old, he could say less than five intelligible words, she recalled.

Eldon knew what he wanted to say.  The message from his brain wasn’t connecting with his mouth muscles to make the right sounds.

Eldon was diagnosed with childhood apraxia of speech. It’s a motor speech disorder that makes it difficult for a child to plan the right mouth movements for speech.

With the right speech therapy, Eldon has flourished and is now able to speak full sentences at 4 years old.

Apraxia is one of the most severe childhood speech and communication disorders. Yet, it is often misunderstood or unfamiliar to the general public. Mandy is now working to raise awareness and share Eldon’s story.

Mandy petitioned the city councils in Bloomington and Normal to declare May 14 Apraxia Awareness Day in their communities. McLean County will also make a proclamation for Apraxia Awareness Month in May. May is also Better Hearing and Speech Month.

Mandy believes it’s important to be a strong advocate for her child and educate the community about Eldon’s condition.

“It’s frustrating because a lot of people look at him and think he doesn’t know what he’s saying,” she said. “His receptive language is insane. His speech just sometimes comes out as gibberish, but he thinks he’s saying it perfectly clear.” 

Eldon was born with severe hearing loss in his right ear and now has a cochlear implant.

He began receiving Early Intervention services shortly after birth. He later enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

As he grew, Eldon struggled to speak. Mandy at first thought he had a developmental delay.

One of his Early Intervention therapists diagnosed him with childhood apraxia of speech around his 3rd birthday.

Mandy then enrolled Eldon in the Carle Auditory Oral School (CAOS) in Urbana. The program helps children with and without hearing loss develop spoken language and listening, thinking and learning skills.

At CAOS, Eldon receives extensive speech therapy with speech pathologists well-versed in apraxia, Mandy said.

Since the family lives in Bloomington, Mandy drives an hour each way to take Eldon to school. She says the commute is well worth it.

“It’s amazing. I cannot say enough good things about what this school does for these kids. If they were not there, I know without a doubt Eldon would not be where he is,” she said “Every child with apraxia is different. They might struggle with different sounds or words, so his school is tailored to each child and their needs.”

Speech therapy is vital for youth with childhood apraxia of speech. 

“The biggest thing is being able to diagnosis it properly. Kids can be so different on what they struggle with,” Mandy said. “With Eldon, it’s a double-whammy. He has the apraxia and he has the hearing loss, which makes it difficult to pinpoint sounds.”

Mandy is thankful for the support from the CAOS program, Early Intervention and DSCC to help Eldon receive the right therapy and services for his unique needs.

“Early intervention gave me so much insight and answers to so many questions and helped guide me in the right way,” she said.

Mandy calls her DSCC Care Coordinator, who is a speech-language pathologist,  phenomenal. She attends Eldon’s appointment and takes notes for Mandy. She also helps the family find resources and stay on track with important deadlines.

“It’s definitely been an emotional journey and an exciting and scary journey,” Mandy. “I remember people telling me at the beginning of this to document everything… It’s hard sometimes when there isn’t a lot of progress or times when we’re stagnant. But then I look back and remember where he was and that all of these little accomplishments are huge for him.”

For more information on apraxia, visit www.apraxia-kids.org.

More information on Eldon’s progress and the family’s fundraising efforts for the Carle Auditory Oral School is available on their fundraising page.

DSCC’s posted office phone numbers are best way to reach our staff by phone.

Our staff is here to help Illinois families navigate the far-reaching effects of the coronavirus (COVID-19) pandemic.

We want to make sure Division of Specialized Care for Children (DSCC) participants use the correct phone number when calling their Care Coordinator or other DSCC team member.

Participants and community partners should use the local number or toll-free 800-number for each regional office posted at https://dscc.uic.edu/find-an-office/.

Our office numbers are also listed on our brochure and in our Family Handbook for participants.

You may also call our general toll-free number at (800) 322-3722 and we’ll direct you to the right place.

We have updated our phone system. Our main office numbers remain unchanged, but previous internal phone numbers will be disconnected.

Please only use our listed office phone numbers going forward.

Thank you for your cooperation!

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.

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/.