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:

• Lighthouse (Lighthouse in Spanish)
• Sunflowers (Sunflowers in Spanish)
• Hot air balloons (Hot air balloons in Spanish)
• Gears and clock (Gears and clock in 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!

We’ve created free templates you can personalize to help doctors, schools and others get to know your child

It takes a village to care for children and youth with special healthcare needs. Parents and caregivers must partner with many different team members — specialists, nurses, therapists, educators and so on — to help their children reach their full potential.

Ensuring everyone understands your child and their unique needs can be exhausting. We want to help make it easier to share your child’s strengths, wants, goals and more.

We’ve created “All About Me” Pages that you can personalize to help anyone get to know your child. These free templates highlight what works best for your child, what they like and dislike and who they are as a person.

There are a variety of designs to choose from to help you capture your child’s personality and what makes them unique.

Visit the new “All About Me” Pages section of our website to see the templates and learn how to customize them for your child. 

Our “All About Me” Page templates are available for anyone to download and customize.

If you are a Division of Specialized Care for Children (DSCC) participant and need help using the templates, please contact your Care Coordinator. 

These pages are a result of feedback from our annual family surveys and our Family Advisory Council meetings.

We hope these pages can be helpful conversation starters with new doctors, nurses, teachers and other caregivers for your child. 

A new video and an updated free online course are available to help support the care of children with tracheostomy tubes

Parents and caregivers have a lot to learn when their child needs a tracheostomy (trach) tube to breathe.

Our Division of Specialized Care for Children (DSCC) team is here to support and guide families through learning how to care for their children’s complex medical needs.

We’ve gathered two new training resources to help families understand trach care.

Lurie Children’s Hospital Video on How to Handle Trach Emergencies

When emergency situations occur, it’s very important to keep the child’s trach tube open and in place.

Ann and Robert H. Lurie Children’s Hospital of Chicago has developed a video to help parents, caregivers and others know how to handle emergency situations with pediatric trach patients.

In this video, Lurie nurses explain:

• How to prevent and assess emergency situations
• How to manage a mucous plug
• How to replace a trach tube that has become dislodged
• What to do if the trach tube is difficult to replace
• When to provide manual ventilation using bag to trach tube, bag and mask to mouth, and mouth to mouth

We encourage our participant families in the Home Care Program to watch this video. Many of the children and youth in the Home Care Program rely on trachs and ventilators to breathe.

Please note that watching this video alone is not enough training to safely care for a child with a trach. Families should speak with their child’s doctors and care team about any questions or training needs.

For more information on how to safely care for a trach tube, you can visit Lurie’s Tracheostomy Care at Home webpage.

Free eHomeCare Course on How to Care for Children With A Trach

An updated free online course is available on how to care for children with trachs with or without a ventilator.

The eHomeCare program training is for:

• Nurses working in home-based environments
• Physicians
• Respiratory therapists
• Family members and caregivers of children with trachs with and without ventilators
• Students from health professions

The course is available until Sept. 30, 2026.

Learners can use this course for initial training, an annual review or as an ongoing resource.

The course learning objectives are:

• Describe best practices for providing day-to-day care for children with trachs with or without ventilators in the community
• Explain how to manage emergency situations for children with trachs with or without ventilators in the community
• Report an increase in confidence when caring for children with trachs with or without ventilators in the community
• Describe the roles and responsibilities of members of the healthcare team.

Free continuing education credits are available.

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

Again, please note that families should speak with their child’s doctors and care team about any questions or training needs for their child with a trach.

Our participant families can also contact their DSCC Care Coordinator with questions.

National Consumer Scholars can develop leadership skills and share their experiences to help improve care and services for people with complex health and social needs

A leadership development program is available for caregivers and advocates who live with and/or care for someone with complex medical needs.

The Camden Coalition is accepting applications for its 2023-24 National Consumer Scholars program.

In the National Consumer Scholars program, caregivers and advocates can take part in peer-led leadership development activities. They play an active role in the coalition’s annual conference and bring lessons back to their local communities. Consumer Scholars also work alongside Camden Coalition staff to develop and inform the complex care field.

National Consumer Scholars have firsthand experience living with and/or caring for someone with complex health and social needs. They also have experience working as a consumer/patient advisor/advocate and/or community leader.

The program is open to individuals from across the country who represent many different experiences.

Learn more about the program and how to apply on the National Consumer Scholars program website.

The application deadline is May 31.

For more information, contact Evelyne Kane at ekane@camdenhealth.org.

DSCC partners with IL LEND to offer an online space for parents to learn about important topics, gain resources and discuss strategies

A new webinar series provides an online space for parents and caregivers to access educational workshops, learn about resources and discuss strategies and support needs.

The series is open to all parents and caregivers of children enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

It’s the result of a partnership between DSCC and UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND).

There is no cost for families to participate.

Please note this workshop series now has a parent education focus rather than a traditional support group.

The virtual workshops will take place via Zoom on the third Wednesday of the month through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with staff

The workshop schedule is for the following dates from 7 to 8 p.m.:

• Feb. 16
• March 16
• April 20

The topic for the Feb.16 session is Early Intervention. The guest speaker is Maria Kastanis, assistant director of the Early Intervention Training Program (EITP) at the University of Illinois at Urbana-Champaign.

The details and registration information for the next meeting are below:

• WHAT: Educational workshop series for parents/caregivers of children and youth enrolled in DSCC’s programs
• WHEN: Feb. 16, 7 to 8 p.m.
• TOPIC: Early Intervention (Note: the discussion part of the workshop will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• Registration link

Visit the workshop series website for more details about the series and individual meetings.

We’ll also post details about upcoming meetings in the Events section of our website.

If you have questions about the series or an individual meeting, please fill out the Contact Us section of the workshop series website.

UPDATE: Please note this support group is now open to all families of children enrolled with the Division of Specialized Care for Children. See the latest support group news for more details.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is partnering with UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) to offer a support group for families enrolled in the Home Care Program.

The Home Care Program helps children and adults who require in-home nursing care. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

This support group will provide an online space for parents to access educational workshops and swap concerns, resources and strategies.

There is no cost for families to participate.

The group will meet on the third Wednesday of the month from November through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with Home Care staff

IL LEND would also like to hear families’ ideas for future support groups and workshop topics. You can share your feedback on this brief online form.

The support group schedule is for the following dates from 5:30 to 6:30 p.m.:

• Nov. 17
• Jan. 19
• Feb. 16
• March 16
• April 20

Here are details for the first session:

• WHAT: Virtual support group/workshop series for parents/caregivers of children and adults enrolled in the Home Care Program.
• WHEN: Nov. 17 from 5:30 to 6:30 p.m.
• TOPIC: Navigating the COVID-19 Pandemic (Note, the discussion portion of the support group will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• REGISTER: Please sign up online in advance. After registering, you will receive a confirmation email containing information about joining the workshop discussion via Zoom.

Mom’s new podcast features Care Coordinator Amanda Kaufman and how she helps children with medical complexity through DSCC

As a Care Coordinator in the Home Care Program, Amanda Kaufman guides parents and caregivers as they learn to care for their medically complex children at home.

One of those parents formerly on her caseload is Erica Stearns. Erica is the mother of two Home Care participants, 5-year-old Margot and 3-year-old Caratacus.

Earlier this year, Erica started a podcast called, “Atypical Truth.” The podcast focuses on issues affecting caregivers, individuals with disabilities and individuals with complex medical conditions.

Erica recently invited Amanda on the podcast to talk about her role at the Division of Specialized Care for Children (DSCC), where she works in our St. Clair Regional Office.

During the conversation, Erica spoke about how Amanda and DSCC have provided invaluable support to her family:

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.

The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis.

DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home rather than in a hospital or an institution, they’ve also supported us emotionally throughout every step of this journey.

They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and they even go so far as to send birthday cards to each of the kids, which I just can’t express it enough how touching and heartwarming that singular gesture is.”

Amanda talked about her background as a social worker and her passion for connecting families to the right resources.

“I love finding resources, and I love being successful at finding something that a family needs,” Amanda told Erica.

Amanda also shared how caring for her late mother now helps her relate to her participant families’ challenges and emotions.

You can access the entire podcast episode, titled “Resource Hunter,” on the Atypical Truth website. It is available for listening on all popular podcast streaming services.

A big thank you to Erica for featuring DSCC and highlighting Amanda’s compassion and commitment to our participant families!