Learn How Supported Decision-Making and Guardianship Can Help You Plan for the Future

May 13th, 2026

On the left, a mother and her daughter are standing together and smiling. The text reads, "Planning for the Future: Supported Decision-Making and Guardianship" and the UIC Division of Specialized Care for Children logo

Join our free webinar on June 8 for families of youth with special healthcare needs transitioning to adulthood

When a young person with special healthcare needs turns 18, their family often faces important decisions about independence, legal rights and long-term support.

Join the Division of Specialized Care for Children (DSCC) for our free webinar, “Planning for the Future: Supported Decision-Making and Guardianship,” on June 8 from 6 to 7 p.m.

The presentation is for families of youth with special healthcare needs preparing for the transition to adulthood.

Bring your questions and learn from presenter Consuelo Puente, a retired attorney, dedicated advocate and mother of two adult sons with autism.

Consuelo will explain the differences between guardianship and supported decision-making, including:

  • What each option means
  • When they may be appropriate
  • How they can affect a young person’s rights and autonomy

Participants will learn how supported decision-making can serve as an alternative to full guardianship, promoting self-determination while helping ensure safety and well-being.

The presentation will also cover the basic steps to establish guardianship in Illinois, helping families better understand the legal process and what to expect.

See the webinar flyer for more details:

Register for “Planning for the Future: Supported Decision-Making and Guardianship“

Live Spanish translation will be available.

Continuing education credits are available for social workers.

The recording and slides from the webinar will be available on our Family Education Webinars page.

For more details or other questions, please contact Claire Cook, DSCC Title V Transition Specialist, at clairer3@uic.edu or (800) 322-3722.

We hope you’ll join us!

Share Your Input at Our May 7 Family Advisory Council Open Forum

April 17th, 2026

DSCC Family Advisory Council logo showing a colorful chain of stick figures holding hands in front of an outline of the state of Illinois

We invite all Illinois families of children with special healthcare needs to share their feedback and experiences at this virtual forum.

Join us for an opportunity to connect with other families and share your feedback on topics that matter to you. 

Our next Family Advisory Council (FAC) open forum is on May 7 from 9 to 11 a.m. 

Members will discuss how they can partner with the Division of Specialized Care for Children (DSCC) to share their families’ stories, successes and helpful tips and resources they’ve learned along the way. 

The FAC will also open the floor to hear your ideas as they discuss DSCC’s messaging to families, digital communication channels and more.  

This free virtual meeting is for all Illinois families of children with special healthcare needs. You do not have to be a Division of Specialized Care for Children (DSCC) participant to attend. 

You can sign up on Zoom to join the meeting. Please note that live Spanish translation will be available.

The FAC guides our efforts to strengthen teamwork, improve communication and empower families to have a voice in their children’s care. The council also connects families to resources and other families who are on a similar journey. 

You can find the minutes from past meetings and more details on our website’s Family Advisory Council page. You can also learn more about some of our FAC members on our Meet Our Family Advisory Council Members page.

If you have questions or would like more details on how to participate in the FAC, please email dsccfac@uic.edu.

We hope to see you on May 7!

Create Holiday Magic with Inclusive Fun for Everyone!

November 21st, 2025

A DSCC participant family of four poses with Santa Claus in front of a festive holiday photo backdrop in DSCC's Mokena Regional Office

Celebrate the holidays with our list of inclusive, sensory-friendly events happening across Illinois.

The holiday season is a time for joy, connection and shared traditions. For individuals with sensory sensitivities, medical complexities and other disabilities, typical celebrations may not always feel comfortable or accessible.

Every family deserves the chance to enjoy the season in ways that support their children and loved ones’ needs and allow for meaningful moments together.

We’ve gathered a list of inclusive and sensory-friendly holiday events happening throughout Illinois. These activities can help you experience the magic of the season at a pace and environment that works best for your family.

There are sensitive Santa opportunities, Mr. and Mrs. Deaf Claus, light displays, low-sensory celebrations, accessible theater performances and other welcoming events for children and adults with special healthcare needs.

You can check out our Special Events page for the full roundup of activities. Just like Santa’s list, be sure to check it at least twice as we continue to add events!

Please note that the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in the organization or scheduling of these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

Featured Events

Chicago and Northern Illinois

Check out WTTW’s list of holiday light displays and experiences. Kidlist also offers a huge list of Chicagoland drive-through and walk-through displays to help you get into the holiday spirit.

Other Chicagoland sensory-friendly activities include:

Central Illinois

Inclusive holiday parties are happening in central Illinois, such as:

For more ideas, check out Chambanamoms.com’s roundup of holiday season fun for families and Visit Springfield.

Southern Illinois

There are many hometown holiday parades, concerts and festivals throughout the area. You can check Southern Illinois Families (SI Families) and Southernmost Illinois for lists of events.

Inclusive activities include:

Have an Event to Share?

If you know of an inclusive or sensory-friendly event to include in our list, please email us at dscc@uic.edu.

Resources to Recharge

The hustle of the holiday season can feel overwhelming.

There are resources available if you need to step back and take a deep breath.

You can search our website for support groups and helpful webinars. On Dec. 11, the “How to Keep from Kicking Santa Claus – Tips for Managing Holiday Stress” webinar will feature practical tips for relieving stress, preventing meltdowns and strategies for creating your own fun.

Our Caregiver Mental Health Toolkit is also a great resource during the holidays and beyond.

Happy Holidays!

Honor National Family Caregivers Month by Caring for Yourself

November 12th, 2025

Caregiver Mental Health Toolkit graphic featuring a toolbox, a hand holding a heart and the Division of Specialized Care for Children logo

We’ve developed resources to help you support your mental health, reduce stress and connect with others who understand.

November is National Family Caregivers Month, a time to recognize and celebrate the incredible dedication of families caring for children and youth with special healthcare needs.

At the Division of Specialized Care for Children (DSCC), we know that caregiving can be both a rewarding and challenging journey.

As you care for others, it’s just as important to take care of your own mental health.

Find Support in Our Caregiver Mental Health Toolkit

Our Caregiver Mental Health Toolkit can help you find the support and strategies you need to recharge and stay well.

This online resource offers practical tips, self-care strategies and mental health resources to help you navigate the unique demands of caregiving while prioritizing your own health and well-being.

The Caregiver Mental Health Toolkit includes:

  • Stress management strategies and techniques to help you cope with tough times.
  • Self-care tips and practical ways to nurture your own physical, emotional and mental health.
  • Mental health support resources to connect you with professional help and support networks when needed.
  • Apps, online tools, videos and podcasts you can access anytime.

Explore the Caregiver Mental Health Toolkit

We created this toolkit with input from our Family Advisory Council, which shared the importance of mental health support for caregivers like you.

Whether you’re a parent caring for a child, a family member supporting a loved one or anyone in a caregiving role, we encourage you to explore this free resource.

Connect With a Fellow Caregiver for Support

One of the most powerful supports you can have is a connection with another parent who truly understands.

We have a Home Care Family Outreach Associate on our team who understands the unique challenges of caring for a loved one with complex medical conditions firsthand.

Our Home Care Family Outreach Associate works to create a community for caregivers within DSCC and offer heartfelt support, connection and empowerment.

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

Learn more about Erica Stearns, our current HCFOA, on our Home Care Family Outreach page and in the short video below:


Meet our Home Care Family Outreach Associate


Take a Break with Caregiver Coloring Sheets

We’ve also designed four coloring pages to help caregivers relax and take time to relieve stress and practice mindfulness.

There are four designs available in both English and Spanish:

These printable pages are a simple way to pause, relax and focus on yourself.

More Mental Health Resources and Support

You can find more mental health resources in our online Resource Directory.

Be sure to also follow our DSCC Facebook page and Instagram page for helpful reminders and tips throughout the rest of the month.

Your DSCC care coordination team is also here to support you. They can listen, help identify your needs and find available services and resources.

As the heart of your child’s care team, we celebrate you this month and always!

Free Virtual Training Program on Caring for Children With Complex Medical Needs at Home

September 18th, 2025

the eHomeCare logo featuring a computer screen with a an illustration of a stethoscope and a heart and a house

DSCC is proud to sponsor the expanded eHomeCare program to help families and home nurses improve their care knowledge and refresh their skills

We are excited to help expand a free online training program on how to care for children with complex medical needs at home.

Research shows that the number of children in need of medically complex care at home is steadily growing. With this growth, there is an urgent need for current and accessible educational resources to ensure the quality and safety of care for these children.

We’ve also heard from families and home nurses that they need a way to expand their knowledge about care in the home and refresh their skills.

The Division of Specialized Care for Children (DSCC) is proud to sponsor the expanded eHomeCare program to help meet this need and equip caregivers with the tools and knowledge necessary to provide high-quality care.

The eHomeCare program provides comprehensive, evidence-based information on the care of children with complex medical needs at home. The training is for:

  • Family members and caregivers of children with complex medical needs
  • Nurses working in home-based environments
  • Physicians
  • Respiratory therapists
  • Students from health professions
  • Anyone interested in learning more about caring for children with complex medical needs.

The eHomeCare program consists of eight on-demand courses to enhance the knowledge, skills and confidence of home care providers in the following areas:

  • Caring for children with a tracheostomy with or without a ventilator
  • Central line care
  • Dialysis in home
  • Infection control
  • Setting boundaries in the home
  • Skin care
  • Range of motion
  • Daily care activities for children

The courses aim to bridge knowledge gaps and enhance caregivers’ confidence and competence in managing both routine and emergency situations.

Please note that the completion of these training courses alone is not enough to demonstrate proficiency in skills that require specialized care (such as caring for a trach, ventilator or central line). If you are interested in becoming trained to provide these cares, please talk to your child’s medical team or home nursing agency.

Parents, extended family members, caregivers and others can use these modules to learn and refresh different skills for caring for their medically complex child in the home setting.

To learn more about the courses and enroll, visit the eHomeCare Online Training Program website.

After participating in the eHomeCare courses, individuals will be able to:

  • Describe best practices for providing care and managing common issues for children requiring complex medical care at home.
  • Recognize signs and symptoms of complications and determine appropriate responses when caring for children requiring complex medical care at home.
  • Demonstrate enhanced confidence and competence in providing care for children requiring complex medical care at home.
  • Collaborate effectively with healthcare team members to provide comprehensive and coordinated care for children requiring complex medical care at home.

Free continuing education credits are available.

If you have trouble enrolling in the course or need help, please email help@icep.wisc.edu.

The eHomeCare Program originally started as one course focused on trach and vent care through a partnership of several Wisconsin-based nursing schools and hospitals.

DSCC provided funding and collaboration to expand the eHomeCare training program in response to family feedback on the need for more education and training on caring for children with complex medical needs at home.

We partnered with the Illinois Department of Healthcare and Family Services (HFS) and the federal Centers for Medicare and Medicaid Services (CMS) to fund the project.

DSCC team members worked with eHomeCare developer Dr. Kim Whitmore and her team at Ujima United to add more courses to the training in collaboration with the Interprofessional Continuing Education Partnership at the University of Wisconsin-Madison.

We hope the expanded eHomeCare training modules will be a valuable resource for families, caregivers and everyone involved in their children’s complex care at home.

Meet Our Medical Advisory Board Member Dr. Sarah Sobotka

March 7th, 2025

headshot of Dr. Sarah Sobotka

“My hope is that what I bring to DSCC… are the data points that help to drive advocacy and improvements in care.”

Dr. Sarah Sobotka first started working with the Division of Specialized Care for Children (DSCC) through her research to improve support for children with mechanical ventilators and their families.

“I have been working with DSCC as a critical partner in my research program since 2017,” she said, noting how DSCC helped recruit eligible families for her research studies.

“I am so fortunate to have had the enthusiastic support from DSCC because our missions are so aligned and from a research standpoint, it allows me to work with a state agency that lacks the bias of a single hospital center or a single institution… it is a more balanced sample, working with the entire state.”

Sobotka and DSCC share the same goal to better understand the needs of children with medical complexity and connect their families with the right services and support to achieve their best quality of life.

In 2020, DSCC’s leadership invited Sobotka to join our Medical Advisory Board as an expert medical provider.

Her research and expertise provide valuable perspectives on how to best allocate resources and improve systems of care for all Illinois children and youth with special healthcare needs.  

An early focus on children with medical complexity leaving the hospital

Sobotka is an Associate Professor of Pediatrics, Section of Developmental and Behavioral Pediatrics, and Ambulatory Medical Director of Comer Developmental and Behavioral Pediatric Programs in the Department of Pediatrics at the University of Chicago.

She became interested in children with medical complexity while completing her residency.

“I did my pediatric residency, and then I elected to do a developmental and behavioral pediatric fellowship in order to focus on the diagnosis and support of children with disabilities and their families,” Sobotka said.

She quickly saw how long children with medical complexity and undiagnosed disability spent in the hospital.

“I recognized early on that an impediment to their flourishing and to their families’ functioning was the length of time they were in the hospital,” she said. “So, some of my early work focused on that process of discharge and the many components that have to get together in order for a child with medical complexity, particularly kids with ventilators, to leave the hospital.”

As part of Dr. Sobotka’s training, she took an additional year between her third and fourth year of medical school to complete a Master of Science for Clinical Professionals. This advanced degree gave her training in epidemiology and research.

Sobotka’s research focus has explored what happens after children with complex medical needs leave the hospital, what the home nursing landscape looks like and what individual families’ experiences and needs are.

One of Dr. Sobotka’s first research studies involved interviewing DSCC Care Coordinators, skilled private duty nurses, and parents of children in the Home Care Program who came home with a ventilator.

“I interviewed those parents a couple of times after going home, so I really started to understand the complexity of home care challenges and what that looked like for families,” she said.

This research project identified gaps in therapy services for these children, and Sobotka developed interventions to support their diverse disabilities. She also learned more about how DSCC Care Coordinators support families and what motivates and challenges professionals in this important role.

Improving the healthcare system’s efficiency

Over the last seven years, Sobotka has continued to partner with DSCC on multiple studies. Recent projects include:

  • “Disparities in Home Nursing and Hospital Length of Stay for Children with Invasive Mechanical Ventilation: Identifying National Trends and Piloting a Parent-to-Parent Intervention”
    • This study includes a parent-to-parent coaching pilot program for families. This pilot program is for families who have a child on a ventilator in the hospital and are awaiting home nursing so their child can be discharged home or have gone home and do not have enough home nursing support.
  • “Let’s E.A.T! (Eating with Assistive Technology)”
    • This study aims to help children with feeding tubes and tracheostomies (trachs) eat by mouth. It is for families who have a child under 3 years old with a feeding tube and trach.

You can read more about these studies on pages 35 and 36 of our FY 2024 Annual Report.

A major theme in Sobotka’s work is improving the healthcare system’s efficiency so that all children, especially those with medical complexity, spend more time in the least restrictive environment at home with their families.

“This ultimately has the greatest potential to improve their developmental trajectory, because although this is a population at high risk for complex disability, I still believe there are opportunities to mitigate the worst disability outcomes with the right interventions at the right times,” Sobotka said.

Sobotka says families’ experiences and feedback direct the course of her research.

As a Medical Advisory Board member, Sobotka enjoys the opportunity to collaborate with other members to advocate for parent caregivers. She also aims to keep families’ needs and priorities at the center of decisions and improvements in the healthcare system.

“My hope is that what I bring to DSCC and also to other investigators, clinicians, and families are the data points that help to drive advocacy and improvements in care,” she said.

Thank you, Dr. Sobotka, for your dedication to improving the lives of children with complex medical needs and their families!

Sensory-Friendly and Inclusive Holiday Events for All Ages

November 23rd, 2024

A young girl with Down syndrome wearing a winter coat and hat standing outdoors in front of a Christmas tree

Experience the magic of the season with Santa visits, light displays and other fun events happening throughout Illinois.

The holiday season is a time for joy, connection and celebration. For individuals with sensory sensitivities and other disabilities, traditional festivities can sometimes feel overwhelming.

We’ve gathered a list of inclusive and sensory-friendly holiday events happening throughout Illinois to help families celebrate the season.

There are light displays, sensitive Santa opportunities, parades and more going on throughout Illinois.

Our Special Events page includes a roundup of opportunities designed specifically for youth with disabilities and special healthcare needs.

We hope this collection of events will help spark ideas to create your own holiday magic:

Be sure to check our Special Events page often as we add more holiday activities to the list. If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Happy Holidays!

Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in the organizing or scheduling of these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

NurseNet Simplifies the Search for In-Home Nursing

October 2nd, 2024

DSCC participant Kaharri Pittman, who is enrolled in the Home Care Program, sits inside his crib next to his ventilator

Home Care Program parent praises NurseNet as an easy way to find available nurses in your area

The search for in-home nurses can be exhausting for many families of loved ones with complex medical needs.

Home Care Program parent Shekia Wright understands this challenge.

She recently tried NurseNet to find available nurses for her 1-year-old son, Kaharri Pittman (pictured above). He has a tracheostomy and relies on a ventilator to breathe.

Shekia set up a NurseNet account and entered Kaharri’s nursing needs.

She quickly found two available matches from two different nursing agencies. Overall, she was impressed with how easy NurseNet is to use.

“It was easy to set up the account and easy to find available nurses,” Shekia said. “I would recommend NurseNet to any families looking for nursing.”

NurseNet is a new tool that makes it easier for families to find the in-home nursing care their child needs. We created NurseNet to be an online resource that connects families with available in-home nursing providers throughout Illinois.

Families can use NurseNet to share their nursing needs. Nursing agencies that are enrolled with the Division of Specialized Care for Children (DSCC) can see this information and contact families if they have available nurses who match the child’s care needs.

Nursing agencies can also use NurseNet to share information about where nurses are available.

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

How NurseNet Helps Families

  • Easy Access: NurseNet is available 24/7, giving you the flexibility to search for nursing providers at your convenience.
  • Comprehensive Listings: The tool includes a wide range of in-home nursing providers across the state, ensuring you have multiple options to choose from.
  • Direct Connection: You can contact nursing providers directly through NurseNet, making the process of securing care for your child quicker and more straightforward.

How to Get Started

We encourage you to visit our NurseNet page and explore this new tool. There you’ll find guides and how-to videos to help you get started. 

If you have problems accessing NurseNet, please send an email to dsccexternalhelp@uic.edu.  

You can also talk to your DSCC Care Coordinator to help you get started. Your Care Coordinator can assist with the sign-up process during your next home visit.

We understand how important it is to have reliable, skilled nursing care for your child. We believe NurseNet will significantly improve your ability to find the support you need!

Podcast Highlights DSCC’s Role in Policy Solutions for Children with Complex Care Needs During Emergencies

September 12th, 2024

A set of headphones resting above a recording microphone on an orange background

The MCH Bridges podcast shares the story of how DSCC partnered with parent advocates and state agencies to allow generators to be an MFTD waiver benefit

In August 2020, a powerful windstorm called a derecho struck Illinois.

The storm produced about 15 tornadoes in the Chicagoland area and caused widespread power outages. Many people were without power for multiple days.

After the storm, parent advocate Susan Agrawal compiled feedback from Home Care Program families about how the power loss affected their children and loved ones with complex medical needs. She then shared this feedback with the Division of Specialized Care for Children (DSCC).

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS). The Home Care Program serves individuals who need in-home nursing to safely live at home.

Many of these individuals are enrolled in the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent (MFTD waiver). These individuals often have tracheostomies, ventilators, gastrostomy tubes and other medical technology that depends on electricity.

The feedback Agrawal shared showed that many Home Care families wanted the ability to use MFTD waiver funds to pay for power generators for their homes.

DSCC took this feedback, did research and worked with HFS to pursue an amendment to the MFTD waiver to allow waiver funds to cover the cost of generators.

A recent episode of the MCH Bridges podcast tells the story of how this new waiver benefit became available for families. The podcast is from the Association of Maternal and Child Health Programs (AMCHP).

Dr. Molly Hofmann, DSCC’s Director of Care Coordination, Systems Development and Education, co-hosted the episode called “Generating Policy Solutions to Protect Children with Complex Health Care Needs During Emergencies.”

The episode highlights the importance of preparedness, especially in the face of natural disasters or power outages that can severely affect the care of children who are medically fragile and technology dependent.

It features the following DSCC team members and partners:

  • Stephanie Leach, DSCC’s Associate Director of Systems of Care
  • Courtney Kerfoot, DSCC’s Integrated Program Support Specialist
  • Susan Agrawal, parent advocate, Director of the Family-to-Family Health Information Center at The Arc of Illinois and the founder and leader of MFTD Waiver Families in Illinois
  • Pam Winsel of the Illinois Department of Healthcare and Family Services

Thank you to AMCHP for highlighting our efforts and partnerships to ensure children with complex medical needs have the life-saving technology they need in emergency situations!

You can learn more about how the MFTD waiver pays for home generators and other important benefits for Home Care families on our Waiver Services for Home Care Families page.

In-Depth Simulated Training in Chicago for Families and Caregivers of Children with Complex Medical Needs

August 28th, 2024

A woman in a mask checking the tracheostomy tube of an infant medical training mannequin in a simulation room setting

This free in-person training will take place Sept. 24-25 at UIC’s Simulation and Integrative Learning Center in Chicago.

Registration is now open for a special in-person training program for the families and caregivers of children with complex medical needs.

This free two-day training will take place Tuesday, Sept. 24, and Wednesday, Sept. 25, at the University of Illinois Chicago Simulation and Integrative Learning (SAIL) Center on the fifth floor at 1220 S. Wood St. in Chicago.

Families have shared the need for more support for parents/caregivers of children with complex medical needs. We are excited to partner with Almost Home Kids to provide this valuable training opportunity. It will offer essential tools and knowledge to help you in your caregiving journey.

You may attend this training if you:

  • Are the parent or caregiver of a child in the Home and Community-Based Services Waiver for Those Who Are Medically Fragile Technology Dependent (MFTD waiver)
  • Have prior experience in caring for a child with a tracheostomy (trach) tube and/or a child with a trach tube and ventilator
  • Are able to commit to online learning before the in-person learning days
  • Can attend both dates to complete the training

The training will be from 8 a.m. to 4:30 p.m. each day. The in-depth curriculum will include:

  • Reducing the risk of infection
  • Skin care
  • Daily care of the child with a tracheostomy and ventilator
  • Activity and movement
  • Equipment and alarms
  • Gastrostomy care and feeding
  • Tracheostomy basics
  • Respiratory assessment and interventions
  • Ventilator training with hands-on practice
  • Emergency preparedness
  • Caregiver resiliency and well-being
  • Simulation learning experience

You can also see the Caregiver Simulated Training flyer for more details.

Please sign up online to participate in the training. There is no cost to attend.

For more information, contact Yolanda Rivera, Nursing Professional Development Specialist and Clinical Educator, at connect@almosthomekids.org or (630) 271-9155, ext. 114.

This training is part of our efforts to use federal funding from the American Rescue Plan Act to improve support and services for families of children with complex medical needs.

Almost Home Kids (AHK) provides a bridge from hospital to home through an innovative community-based care system for children with medical complexities. Its services include:

  • Responding to the needs of families
  • Training caregivers
  • Advocating for accessibility and inclusion
  • Educating healthcare professionals

Almost Home Kids has locations in Chicago, Naperville and Peoria.