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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Employment

• Health care

• Independence

• Quality of life

The YAC’s role is to:

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

Members participate in four virtual meetings per year.

Who is Eligible to Join the YAC?

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

• Ages 15 to 24

• Living in Illinois

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

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

How to Join and Learn More

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

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

You can also see the YAC flyer for more details:

• YAC flyer in English

• YAC flyer in Spanish

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

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.

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. 

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

• Transitioning Health Insurance Benefits to Adulthood, May 14 at 6 p.m.
  • This training will help you understand how to transition health insurance benefits to adulthood. It will go over different insurance types, including Medicaid, Medicare and private insurance. This presentation will help you know what to start thinking about for health insurance benefits as you or your child nears adulthood.
  • See the Transitioning Health Insurance Benefits to Adulthood flyer for more details.
  • Register on Zoom for Transitioning Health Insurance Benefits to Adulthood

• 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.
  • Esta capacitación lo ayudará a comprender cómo hacer la transición de los beneficios del seguro médico a la edad adulta. Tratará diferentes tipos de seguros, incluidos Medicaid, Medicare y seguros privados. Esta presentación le ayudará a saber en qué empezar a pensar en cuanto a los beneficios del seguro médico a medida que usted o su hijo se acercan a la edad adulta.
  • Consulte el folleto de Transición de los beneficios del seguro médico a la edad adulta para obtener más detalles.
  • Enlace para registrarse

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!

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!

Increased rates for in-home nurses will take effect on Jan. 1, 2024.

We have an exciting update for our participants enrolled in the Home Care Program.

The Centers for Medicare and Medicaid have approved a rate increase for in-home nurses in the new year.

We hope this rate increase can help expand available and high-quality nursing options for our participant families.

This rate increase affects:

• Registered nurse (RN), licensed practical nurse (LPN) and certified nursing assistant (CNA) care
• In-home and facility-based respite care
• Nurse training rates

This increase will take effect Jan. 1, 2024. The rates are as follows:

• RN, $54 per hour
• LPN, $45 per hour
• CNA, $30 per hour

You can see the updated Home Health Fee Schedule on the Illinois Department of Healthcare and Family Services (HFS) website.

The following rate increases are for participants who are in the Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD):

• Nurse training for an RN, $54 per hour
• Nurse training for an LPN, $45 per hour
• In-home respite for an RN, $54 per hour
• In-home respite for an LPN, $45 per hour
• In-home respite for a CNA, $30 per hour

HFS will also increase the maximum amount for nurse training service hours from four to 32 hours per nurse per waiver year.

As a reminder, parents and legally responsible adults who have an RN or LPN license can be paid caregivers. (Parents and legally responsible adults who are CNAs cannot be paid caregivers at this time.)

HFS will increase your nursing resource allocation amounts to reflect the increase.

Your Division of Specialized Care for Children (DSCC) care coordination team can help you with any questions about the rate increase or nursing services.

You can also find more helpful information about Home Care Program services on our website’s Home Care Information Hub.

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. 

The DSCC Family Portal can help you easily communicate with your care coordination team and find the information you need

It’s important for our Division of Specialized Care for Children (DSCC) participant families to be active partners in their child’s care. We’re excited to introduce a new way for you to easily share information and communicate with your DSCC care coordination team.

Our new DSCC Family Portal aims to help you find the records you need all in one convenient place.

You can use the Family Portal to:

• Send messages
• Sign documents
• View important letters
• See a list of providers and much more

To access the portal, visit https://go.uic.edu/DSCCFamilyPortal.

To log in to the Family Portal for the first time, you will need:

• Your email address
• Your DSCC participant’s name or DSCC ID number
• A unique password

We know learning a new application can seem tough. We have tip sheets and videos to help you get started and feel comfortable using the portal. You can find these resources on our website at https://dscc.uic.edu/dscc-family-portal/.

If you have trouble accessing the Family Portal or need other support, please email dsccexternalhelp@uic.edu. A designated DSCC staff person will help you as soon as possible.

We are always looking for ways to improve our services and strengthen our support for families.

We hope the Family Portal will be an easy and convenient way for you to connect with your care coordination team and the resources you need.

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.