DSCC Creates New Tool to Improve Families’ Access to Available In-Home Nursing

April 9th, 2024

A nurse sits face-to-face with and extends her arms around a girl with complex medical needs

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!

New Youth Advisory Council for Teens and Young Adults With Special Healthcare Needs

March 27th, 2024

A diverse group of four students, including a young woman in a wheelchair, gathered in a college library and enjoying discussion

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:

If you have questions, please contact Claire Cook, DSCC’s Title V Program Transition Specialist, at clairer3@uic.edu or (800) 322-3722, ext. 1812.

Inclusive Summer Camp Programs for All Ages

March 21st, 2024

The text, "Summer Camp," written with chalk on chalkboard next to chalk sticks of different bright colors

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:

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!

Meet Our Medical Advisory Board Member Dr. Carolyn Foster

March 8th, 2024

“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:

DSCC’s New Home Care Family Outreach Associate is Available to Support Families

March 4th, 2024

Erica Stearns and her husband stand arm-in-arm between their children Margot and Caratacus Stearns who are in medical wheelchairs while the family enjoys time outdoors

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.

Research Study Seeks Families to Help Improve Home Health Care for Children

February 29th, 2024

A mother administers food through her young daughter's gastrostomy tube while the little girl lies on her bed

“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.

Important Update on Change Healthcare Cyberattack and Its Impact on Our Participant Families

February 26th, 2024

"Update" written in white chalk on a blackboard

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. 

2024 Health Insurance Education Webinar Series for Families Kicks Off in March

February 21st, 2024

On the left is a dark blue box with rounded corners with white text that says: Health Insurance Education Series. DSCC's logo is below it. In the upper right and going down the page is a cup of coffee, part of a keyboard and a bright gold pen.

Free virtual training sessions for Division of Specialized Care for Children participants, their families and anyone interested in learning more about health insurance topics

Is figuring out your health insurance leaving you confused, frustrated or both?

Change your confusion to confidence with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Health Insurance Education Series.

These free trainings can help you better navigate your health insurance coverage and benefits. Each month, DSCC team members and other presenters will explain a different topic.

Each presentation will be in English. A Spanish interpretation line will be available during each session.

Check out the topics, mark your calendars and register for each session you’re interested in attending.

The session descriptions are in English followed by Spanish:

  • Social Security Benefits, March 12 at 6 p.m.
    • This training will help you understand Social Security benefits. Presenters from the Social Security Administration will share information about Supplemental Security Income and Social Security Disability Insurance. You will learn who can get benefits and how to apply for benefits. It will also cover what the Social Security program benefits are and how to keep your benefits.
    • See the Social Security flyer for more details.
    • Register on Zoom for Social Security Benefits
  • Medicaid Denials, April 9 at 6 p.m.
    • This training will help you understand Medicaid denials. It will review the common reasons that Medicaid denies services, such as equipment. The presentation will also share tips on how to avoid denials and what to do if Medicaid denies your services. This training will be for those with regular Medicaid and those enrolled in a managed care plan (MCO).
    • See the Medicaid Denials flyer for more details.
    • Register on Zoom for Medicaid Denials
  • Beneficios de Seguro Social, 12 de marzo a las 6 p.m.
    • Esta capacitación lo ayudará a entender los beneficios del Seguro Social. Los presentadores de la Administración del Seguro Social compartirán información sobre el Seguro de Ingreso Suplementario y el Seguro de Incapacidad del Seguro Social. Aprenderá quién puede obtener beneficios y cómo solicitarlos. También cubrirá cuáles son los beneficios del programa de Seguro Social y cómo conservar sus beneficios.
    • Consulte el folleto de Beneficios de Seguro Social para obtener más detalles.
    • Enlace para registrarse
  • Negaciones de Medicaid, 9 de abril a las 6 p.m.
    • Esta capacitación lo ayudará a comprender las negaciones de Medicaid. Revisará las razones comunes por las que Medicaid niega servicios, como equipos. La presentación también compartirá consejos sobre cómo evitar negaciones y qué hacer si Medicaid niega sus servicios. Esta capacitación será para quienes tienen Medicaid regular y quienes están inscritos en un plan de atención administrada (MCO).
    • Consulte el folleto de Negaciones de Medicaid para obtener más detalles.
    • Enlace para registrarse
  • Transición de los beneficios del seguro médico a la edad adulta, 14 de mayo a las 6 p.m.

You can also download a flyer with all the Health Insurance Education Series topics and registration links. (The flyer is also available in Spanish.)

The webinars are open to DSCC participants, their family members and anyone interested in these topics.

This is the second year for the DSCC Health Insurance Education Series. It began in response to DSCC families’ questions and suggestions from our Family Advisory Council.

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

The 2024 Health Insurance Education Series is free for all attendees.

If you miss a session, you can access the recordings and related materials on our Family Education Webinars page.

If you have questions about these webinars before or after a session, email dscc@uic.edu or call (800) 322-3722.

We look forward to seeing you online!

Applications Open for the 2024-25 IL LEND Fellowship Program

February 8th, 2024

IL LEND logo

This free training program prepares graduate students, self-advocates and family members to be leaders in improving health services for people with disabilities.

Family members, self-advocates and graduate students can apply for a free training program to build your skills and improve the quality of life for people with disabilities.

The University of Illinois Chicago’s (UIC) Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) training program is now accepting applications for the 2024-25 school year.

This yearlong interdisciplinary program will provide participants a deep dive into areas that include:

  • Cultural competence
  • Emerging issues
  • Family-centered care
  • Leadership
  • Advocacy
  • Serving children with autism and other disabilities and their families
  • Services and systems change

IL LEND is housed in the Department of Disability and Human Development at UIC. It is part of LEND’s nationwide network providing interdisciplinary training to improve the health and well-being of individuals with disabilities. LEND focuses on providing individuals with the skills necessary to create positive change on all levels, from the individual to systems.

The IL LEND fellowship program brings together trainees from diverse backgrounds. Trainees will participate in classroom learning and a wide variety of hands-on experiences.

Training will focus on serving individuals with disabilities and their families through coordinated, culturally competent and family-centered care and gaining a deeper understanding of public health services and policy systems change.

Training will include:

  • An individually tailored mentorship
  • Weekly didactic (classroom) sessions
  • Research or leadership projects
  • Community outreach
  • Policy and advocacy training
  • Clinical training with a focus on Autism

There is no cost to participate in the fellowship program. Eligible trainees can receive a stipend.

This program is open to graduate students, adults with developmental disabilities, parents and/or siblings of individuals with developmental disabilities, and individuals from diverse backgrounds.

IL LEND trainees from the Chicago metropolitan area meet in person at UIC for their LEND training. Trainees can also join remotely through training sites at the University of Illinois at Urbana-Champaign (UIUC) and Southern Illinois University Carbondale (SIU).

The program gives priority to the following applicants:

  • Family members
  • Self-advocates
  • Graduate students in the represented disciplines, which include nursing, social work, developmental pediatrics, disability studies, and public health.

See the IL LEND graduate program brochure for more details and a complete list of study areas.

Download the IL LEND Fellowship Program application flyer to review or share.

Read more about applying on the IL LEND website. You can also click on the links below to download the:

The deadline to apply is March 25.

If you have questions about the fellowship program, contact Kruti Acharya at acharyak@uic.edu or (312) 413-1495.

To learn more about IL LEND, visit www.illinoislend.org.

DSCC Families, It’s Time to Share Your Input!

January 24th, 2024

The text "Your Feedback Matters" coming out of a megaphone icon

Our annual family survey is an easy way to share your feedback and make a direct impact.

Our participant families are important to us, and your feedback matters.

On Feb. 15, all Division of Specialized Care for Children (DSCC) participants will receive our annual family survey.

This survey asks how well our team members support your family and meet your needs. It also asks about:

  • Your contact preferences
  • How and when you’d like to meet with our team
  • How well our staff communicates with you

You will receive this survey either by email or mail, based on your preferences. If you respond, you will have a chance to win a $50 Visa gift card.*

Your responses will help us strengthen your services. They also guide updates to our DSCC policies and procedures that affect your family.

Our surveys are optional, but we strongly encourage you to share your experiences. We want to ensure we’re doing all we can to help you meet your family’s needs and achieve your goals.

* Please note: Foreign national nonresident aliens are not eligible for the gift card participation prize.

How Your Feedback Makes a Difference

Listening to our participant families is a priority. Your ideas and concerns have helped strengthen our services and guide improvement projects.

Here’s an overview of how the 2023 survey input and overall family feedback made a difference at DSCC:

  • Our authorizations are now easier to fill out and keep up to date. We updated the form authorizing us to share information with multiple providers, meaning only one signature on one form.
  • Our online resource library is now searchable. Families shared their need for more resources. In response, we updated our online Resource Directory and Events page to add search features. This improvement should help all Illinois families of children and youth with special healthcare needs find and share resources more easily.
  • We resumed face-to-face visits. Our care coordination teams resumed face-to-face visits with families following the end of the public health emergency on May 11, 2023. Meeting in person should further improve our connection and engagement with families.
  • We created a new Family Portal. In October 2023, DSCC introduced a new Family Portal to better connect families with their care teams. The portal gives participant families one place to communicate with their care coordination teams, sign documents and access information.
  • We created “All About Me” Pages to help others get to know your child. DSCC developed “All About Me” Pages so families can highlight their child’s strengths, medical needs and more. Families can personalize the templates to best fit their child’s personality. You can share these templates with medical providers, schools, other caregivers and so on. These pages should make it easier to share what works best for your child, what they like and dislike, and their medical needs. These templates are available on our website’s “All About Me” Pages section.
  • We’ve partnered to improve nursing availability throughout the state. Nursing agencies that work with DSCC can now receive a license to work across the state. We partnered with the Illinois Department of Public Health to make this change. The new license process offers more opportunities for nursing coverage for families of children and adults with complex medical needs. DSCC is also developing NurseNet. This interactive website will allow families looking for nursing to connect with nursing agencies.

Please be on the lookout for our annual survey on Feb. 15.

If you have questions or need more information, please contact your Care Coordinator.

We appreciate your partnership and look forward to hearing from you!