This free in-person training will take place July 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 Wednesday, July 24, through Thursday, July 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 expressed 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.

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, email connect@almosthomekids.org or contact Yolanda Rivera at yrivera@luriechildrens.org.

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.

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!

“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.

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

The Division of Specialized Care for Children (DSCC) is excited to partner on a new research study to help improve home health care for children with complex medical needs.

The research team is led by Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago. Foster is one of our Medical Advisory Board Members.

Foster and her research team have received a $2 million grant award to fund the study, called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.” 

This study will bring together experts and patient families to better understand how family caregivers and home nurses can help identify, communicate and prevent safety issues at home for children with complex medical needs. The study will use this input to create a digital safety toolkit to help support families.

DSCC Executive Director Thomas F. Jerkovitz said DSCC appreciates this opportunity to partner in the study. He said DSCC will share our team’s experiences with families and home nurses who report safety challenges at home.

Dr. Molly Hofmann, our Director of Care Coordination, Systems Development and Education, is one of the participating experts.

“DSCC plays such a pivotal role in supporting care in the home and… is a repository for safety events,” Foster said. “DSCC also plays such a functional role in creating solutions, so it was pretty clear to me I wanted to have DSCC be a partner in the grant.”

Children with medical complexity need substantial amounts of care to live safely at home. In recent years, their families have taken on increasingly more in-depth medical care at home.

“We send patients home with increasingly more complex medical regimes, and families have expressed to us they didn’t have a clear way to get the support they need when experiencing problems at home,” Foster said.

“A lot of our patients have an artificial airway to help them breathe or they have a g-tube in their stomach to help them eat. If that gets clogged or it falls out or the tubing connected to the machine gets broken, then they can’t get the nutrition they need and they end up in the emergency room. And it’s a life-threatening event at home if their airway isn’t working,” Foster continued. “The idea for the study is we want to find out what are the things leading up to when those safety events occur so we can prevent them.”

“SafeCare@Home4Kids” also wants to help improve communication when medical device and equipment malfunctions happen at home.

“Doctors don’t always know, and families might not know that they should or can tell us about it. They might tell the DME (durable medical equipment company) to get the replacement part, but we don’t know about it, so we keep ordering it for other patients,” Foster said. “It’s both an issue for current patients and also an issue for future patients.”

The study aims to create a better system where families can communicate safety problems at home and know who to notify when they occur.

“One of the problems we recognize is families are scared they’re going to get in trouble. We want to make sure they feel supported to let us know when medical problems are happening at home,” Foster said. “The goal is to move past the reporting safety events to preventing them in the first place.”

The study will also host focus groups to hear directly from families about the safety issues that affect them.

“The goal is to hear from real families on what it’s like day-to-day,” Foster said. “Hopefully it’s the beginning of several projects to support how we’re improving care in the home.”

If you are a family member and would like to participate or learn more about the “SafeCAre@Home4Kids” study, you can email Foster at fosterlab@luriechildrens.org.

We are excited to collaborate with Foster and her research partners on this important project. We’ll share more updates and opportunities to get involved as it progresses.

The project kicked off in September and will continue through July 31, 2027.

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.