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.”

The prestigious achievement recognizes our commitment to providing the highest quality service and support to our participant families.

We are proud to share a significant milestone for our University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) team.

DSCC has earned Case Management Accreditation from the National Committee for Quality Assurance (NCQA). This achievement recognizes our commitment to providing exceptional care coordination and related support to our participant families.

NCQA accreditation is widely known as a symbol of quality and shows an organization’s dedication to meeting high performance measures and continuous improvement.

“We are thrilled to receive NCQA Case Management Accreditation, which highlights the strength and person-centered focus of our care coordination services,” said DSCC Executive Director Thomas F. Jerkovitz.

“This achievement reflects the great work of our entire DSCC team to improve operations and strengthen how we partner, help and connect with families throughout the state. We hope our participant families can feel confident and empowered, knowing they have a strong support system focused on improving their quality of life.”

DSCC provides care coordination to Illinois children and youth with special healthcare needs and their families through several programs.

We tailor our care coordination to each family’s unique needs and goals. We partner with them to develop a care plan focused on a child’s medial, social, behavioral, educational and financial needs.

Our care coordination can include finding specialized medical care, helping families understand their child’s diagnosis and medical treatment plan, explaining insurance benefits and attending school meetings.

In 2021, DSCC’s leadership set a strategic goal to work toward NCQA accreditation. Our team members have worked for more than three years to achieve this major recognition.

NCQA purposely sets its accreditation standards high to encourage organizations to continuously enhance their quality. The standards aim to help organizations achieve the highest level of performance possible and create an environment of continuous improvement.

The NCQA Case Management Accreditation Program reviewed our care coordination and entire organization against the following standards:

1. Program Description: The organization uses up-to-date evidence-based information to develop its case management program and regularly updates the program with relevant findings and information.
   
2. Patient Identification and Assessment: The organization systematically identifies patients who qualify for its programs.
   
3. Care Planning: The organization coordinates services for patients through the development of individualized care plans.
   
4. Care Monitoring: The organization has systems in place to support case management activities and monitors individualized care plans.
   
5. Care Transitions: The organization has a process to manage care transitions, identify problems that could cause care transitions and prevent unplanned transitions, when possible.
   
6. Measurement and Quality Improvement: At least annually, the organization measures patient satisfaction, program effectiveness and participation rates.
   
7. Staffing, Training and Verification: The organization defines staffing needs, provides staff with ongoing training and oversight and verifies healthcare staff credentials.
   
8. Rights and Responsibilities: The organization communicates its commitment to the rights of patients and its expectations of patients’ responsibilities.

“Case Management Accreditation moves us closer to measuring quality across population health management initiatives,” said NCQA President Margaret E. O’Kane. “Not only does it add value to existing quality improvement efforts; it also demonstrates an organization’s commitment to the highest degree of improving the quality of their patients’ care.”

A big congratulations and thank you to everyone who helped us reach this milestone!

NCQA is a private, nonprofit organization dedicated to improving health care quality. NCQA accredits and certifies a wide range of health care organizations. It also recognizes clinicians and practices in key areas of performance. NCQA’s Healthcare Effectiveness Data and Information Set (HEDIS®) is the most widely used performance measurement tool in health care. NCQA’s website (ncqa.org) contains information to help consumers, employers and others make more-informed health care choices. NCQA can be found online at ncqa.org, on Twitter @ncqa, on Facebook at facebook.com/NCQA.org/ and on LinkedIn at linkedin.com/company/ncqa.

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!

NurseNet helps Home Care Program families connect with nursing agencies to find available nurses in your area.

Finding in-home nurses can be challenging for many families caring for children and adults with complex medical needs.

We’ve created a new tool to help you find and connect with available nursing agencies in your area.

NurseNet aims to bridge the gap between Illinois families who need nursing and home health nursing agencies with available nurses. 

Families of individuals enrolled in the Home Care Program can use NurseNet to share their nursing needs. Nursing agencies that are enrolled with the Division of Specialized Care for Children (DSCC) can share information about where nurses are available. 

This information can help your family find suitable nursing care. It can also help nursing agencies identify opportunities to serve families. 

Anyone can use NurseNet to search for general nursing opportunities across the state. 

The search is set up for families and nursing agencies to find and share what they need easily. As a family enrolled in the Home Care Program, you can log in to NurseNet and enter your nursing needs. 

Nursing agencies can see this information and contact your family within NurseNet if they have a potential nursing opportunity in your area that matches your child’s care needs. You can also use NurseNet to see where nursing opportunities are available throughout Illinois. 

Nursing agencies enrolled with DSCC can log in to NurseNet and enter all areas of the state where they have nurses available. Nursing agencies can also see where families have nursing needs and connect with those families to provide nursing care.  

Visit the NurseNet page on our website to learn about how NurseNet can help both families and nursing agencies. You can also find helpful videos and guides on how to use NurseNet.

We understand the search for in-home nursing can be frustrating and overwhelming. That’s why we created this tool to help you share your nursing needs and connect with nursing agencies with available nurses.

We are excited to offer this tool to help provide nursing connections to our participant families enrolled in the Home Care Program!

An opportunity for youth to help improve transition support and make a difference!

Youth with special healthcare needs should have a big role in shaping their future and helping improve support for others.

We want to hear from teens and young adults about what’s important and helpful to them as they plan for the future. Our new Youth Advisory Council is a great opportunity for them to share their input and make a difference.

The Youth Advisory Council (YAC) is a diverse, youth-driven group that aims to develop more youth-focused ways to help individuals and families with transition planning, resources and services.

The YAC’s goal is to support positive outcomes in adulthood for all Illinois youth with special healthcare needs in the areas of:

• Employment

• Health care

• Independence

• Quality of life

The YAC’s role is to:

• Bring a different and personal perspective on issues important to youth.
  
• Partner with the Division of Specialized Care for Children (DSCC) to help develop more youth-focused methods to enhance care coordination.
  
• Develop strategies to improve communication between youth/young adults and older adults.

Members participate in four virtual meetings per year.

Who is Eligible to Join the YAC?

The YAC is open to youth with special healthcare needs who are:

• Ages 15 to 24

• Living in Illinois

• Planning for the transition to adulthood in the areas of education, health care, employment and home and community-based support

Youth do not have to be a DSCC participant to join the council.

How to Join and Learn More

Members must complete an online application to join. (The application is also available in Spanish.)

Visit our Youth Advisory Council page for more information and answers to frequently asked questions.

You can also see the YAC flyer for more details:

• YAC flyer in English

• YAC flyer in Spanish

If you have questions, please contact Claire Cook, DSCC’s Title V Program Transition Specialist, at clairer3@uic.edu or (800) 322-3722, ext. 21812.

Our list of camps and activities all over Illinois can help you find the right fit for your child

Summer and the long break from school are right around the corner!

The good news is there are a variety of programs throughout the state to help keep your children engaged and learning.

We’ve gathered a list of day and overnight camps as well as virtual programs for youth of all ages with disabilities and special healthcare needs.

Does your child want to make new friends? Develop new skills? Meet others with their same condition or become more independent?

Our 2024 summer camp list can help you find the right fit.

There are several ways to search the camp opportunities on our website:

• Use the search box and filter option on our Events page to search for camps and other related keywords and locations
• View our full 2024 summer camp list
• Use our Events Calendar view to see summer camps listed by date

These camps are accessible and inclusive for a variety of ages and needs, including many of our program’s eligible medical conditions.

Please note that program deadlines vary, and some camps fill up quickly.

Know of a good summer camp opportunity to add to our list?

Send us the details at dscc@uic.edu. We’ll continue to update our list of camps and activities, so please check back often!

“I want to improve the delivery of care to kids and families who have the most significant medical needs.”

Dr. Carolyn Foster is a physician and researcher who has dedicated her career to improving the care and quality of life for children with complex medical needs and their families.

Therefore, serving on the Medical Advisory Board (MAB) for the Division of Specialized Care for Children (DSCC) was a natural fit.

Foster joined the board in 2020. She brings her perspective as a provider as well as 15-plus years of research focused on home health care for children with complex medical needs.

“I was acutely aware from my own patients of the role DSCC played in helping them,” Foster said. “I felt I could bring my experiences as a health services researcher and my understanding of how we evaluate healthcare services and what we know about kids with complex medical needs.”

Foster is currently an attending physician at Ann and Robert H. Lurie Children’s Hospital of Chicago in advanced general pediatrics and primary care. She is also an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine.

Her research centers on developing and evaluating healthcare delivery interventions and healthcare policies for children with medical complexity and disability. The purpose is to maximize health outcomes for these children and improve how well their family members and caregivers navigate their systems of care.

Foster is particularly interested in improving both the access to and the quality of home and community- based health care for children to help them live safe, independent and full lives at home, school and beyond.

“I had a family member who had a health condition that impacted her experience in the day-to-day world, and it motivated me to be a physician. When I was in training, I appreciated this tool of using health services research to improve how we deliver care,” she said.

“I want to improve the delivery of care to kids and families who have the most significant medical needs. There is an ongoing gap in how we serve that population, so I want to put my effort there… This patient population deserves a voice, and I’m hoping to further emphasize that.”

Foster said she appreciates DSCC’s work to shed light on these issues statewide. She is happy to help advise and cheer on these efforts.

“Having a child who has a special healthcare need or disability or complex medical problem is really challenging because the health care, education and community resources are not always talking to one another,” she said.

“DSCC is one of those key programs in the state of Illinois that really provides an important function in making it a little easier for families by helping with care coordination and getting what they need for their child.”

Learn more about Foster’s latest research study below:

• Research Study Seeks Families to Help Improve Home Health Care for Children
• DSCC Partners in Research Study to Improve Home Health Care for Children

Our Home Care Family Outreach Associate Erica Stearns can offer support, connection and empowerment for DSCC families caring for loved ones with complex medical needs.

We understand that caring for a loved one with complex medical needs can pose unique and sometimes unexpected challenges for families.

We are excited to introduce a new Home Care Family Outreach Associate (HCFOA) on our team who understands these challenges and can provide heartfelt support.

With lived experience as a patient, parent and caregiver, our HCFOA can recognize shared experiences and guide families through the complexities of multiple systems of care.

Our HCFOA also works to create a sense of community for caregivers within the Division of Specialized Care for Children (DSCC). In this community, families can feel supported, empowered and more confident in their caregiving journey.

Erica Stearns recently joined DSCC as our first HCFOA. She is the proud parent of two children, Margot and Caratacus, who have been enrolled in the Core and Home Care programs since 2016. They reside in southern Illinois and enjoy the beauty of the Shawnee National Forest.

Erica also serves as the co-chair of DSCC’s Family Advisory Council. You can learn more about Erica, her family and her caregiving journey in The Stearns Family Story.

As our HCFOA, Erica works hand-in-hand with families and caregivers to:

• Create trusting partnerships
• Offer tailored support in addition to the care coordination services they receive from DSCC
• Provide essential caregiver resources

Erica helps ensure that caregivers are equipped with the knowledge and skills they need to advocate for their children and navigate complex systems of care. She can help support your family as you navigate:

• Adjusting to a new norm
• Needing support for your child/loved one’s medical needs and increased level of care
• Looking for guidance on what to expect
• Wanting to connect with other families

Families can request to connect with Erica in several ways. You can ask your DSCC care coordination team to refer you to the HCFOA. You can also email a request to speak with Erica at DSCC-FamilySupport@uic.edu.

For more information about the HCFOA and Erica, please visit our Home Care Family Outreach page.

“SafeCare@Home4Kids” aims to understand and prevent safety issues at home for children with medical complexity

A research study is looking for families to help improve home health care for children with complex medical needs.

The study is called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.” It wants to learn from parents of children with medical complexity about what it is like to care for your children at home, including giving your children complex medication and using your children’s devices. The study aims to find ways to help prevent safety problems with this complex caregiving at home.

Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago is leading the research team. Foster is also a member of the Division of Specialized Care for Children’s (DSCC) Medical Advisory Board.

By sharing your experiences, you can help “SafeCare@Home4Kids” find ways to better support and help parents while reducing problems and challenges at home.

What does the study involve?

Participation in the study will take about one week. For seven days, you will send photos or text-based messages about your experience with your child’s medication-related activities and devices at home. Please note, if you do not have a device, the study researchers will loan you one.

After the week is over, you will meet with research team members to talk about your messages. You will also participate in a “critical decision methods” interview about how you:

• Identify problems with your child’s medication or device
• Communicate the problem
• How you have problem-solved these issues in the past

The research team will keep your answers confidential. If you complete all study steps, you can receive up to $195 by virtual gift card.

How do I participate?

You can enroll in the “SafeCare@Home4Kids” study if you:

• Speak English or Spanish
• Have a child who is 17 years old or younger with a disabling complex chronic condition who uses an implanted medical device to receive medication at home (such as a gastrostomy tube)

Please email fosterlab@luriechildrens.org or call (312) 227-2510 to enroll or ask questions.

For more details about the “SafeCare@Home4Kids” study and DSCC’s involvement, please visit https://dscc.uic.edu/dscc-partners-in-research-study-to-improve-home-health-care-for-children/.

You can also see the study flyer for more information.

We are working with our state and provider partners to try to ensure there is no impact on our participants’ care.

Late last week, we learned of a cyberattack affecting Change Healthcare.

We want to share how this event may impact our participant families. We also want to explain the steps that are in place to try to ensure there is no impact on your child’s care.  

Change Healthcare/Optum is the database that the Illinois Department of Healthcare and Family Services (HFS) uses to manage pharmacy claims. Please see the following communication from HFS at https://hfs.illinois.gov/medicalproviders/notices/notice.prn240223b.html.

In addition to the impact on the pharmacy system, this cyberattack also affects some billing processes. Home nursing agencies use Change Healthcare’s system to electronically submit their bills for payment. 

We have sent communication to the home nursing agencies who use electronic bills and put an alternative method of bill submission into place. This should not create any disruption in the nursing agencies’ ability to provide services in the home.

Lastly, our Division of Specialized Care for Children (DSCC) team is here to support your family with any issues you may experience. 

If you have any concerns or need assistance, please reach out to your assigned DSCC Care Coordinator. We are happy to help you.