The public comment period is open until April 22

Families have an opportunity to share feedback on proposed improvements to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent (MFTD waiver). The public comment period is open until April 22.

The Illinois Department of Healthcare and Family Services (HFS) operates the MFTD waiver. Many families in the Home Care Program have children who receive services through the MFTD waiver.

HFS has announced several amendments to improve how the state delivers, explains and organizes services for individuals receiving MFTD waiver support. The proposed changes aim to make MFTD waiver services clearer, more efficient and easier to access.

The proposed changes include:

NEw Service Added

• Allows occupational or physical therapists to assess a person’s home. This change helps HFS determine what equipment or home changes an individual needs for safety and independence.

Equipment and Technology Updates

• Separates evaluations from equipment services (so HFS bills and and handles them separately)
• Expands the list of covered items, including:
  • Mobility aids (such as lifts and standers)
  • Adaptive items (such as utensils, bikes and seating)
  • Sensory and safety items (such as mats and trampolines)

Home and Environment Changes

• Confirms that Environmental Accessibility Adaptations is no longer a single service
• Breaks it into separate services:
  • Pest control
  • Home modifications
  • Vehicle modifications
• Clarifies that home modifications can apply to more than one home (such as shared custody situations)

Service Improvements and Clarifications

• Adds more detail and clearer rules for:
  • Home modifications (such as lifts, ramps and generators)
  • Pest control (including traps)
• Allows the state to recover certain costs if a person passes away or cannot move home after services are planned

RemoveD Services

• Removes services that the waiver already covers elsewhere to prevent duplication:
  • Placement maintenance counseling
  • Specialized medical equipment

Provider and Service Rules

• Requires providers to be in good standing
• Clarifies when family members can be paid for respite care (only if they don’t live with the individual)

Quality and Oversight Updates

• Improves how HFS monitors and reviews the program
  • Updates performance measures and tracking methods
  • Clarifies who collects and reviews data
  • Adds grievance procedures for participants

Rates and Administrative Updates

• Sets a standard rate for the new therapist assessment service
• Updates cost estimates and system changes to support the amendment

review the full waiver amendments

To review the full waiver amendments, you can:

• Read the public comment notice on HFS’ website
• Review hard copies of the notice at the Department of Human Services (DHS) local offices (except in Cook County).
  • In Cook County, you may review the notice at the Office of the Director, Illinois Department of Healthcare and Family Services, 401 S. Clinton St., First Floor, in Chicago.

How to Get a Copy of the Proposed Waiver AMENDMENTs

• You can download and print a hard copy of the proposed waiver amendments from the HFS website at https://hfs.illinois.gov/medicalclients/hcbs.html.
• You can call (217) 524-4148 to request a copy.
• Copies are also available at the following locations:
  • Healthcare and Family Services
    201 South Grand Avenue East
    Springfield, IL 62763
  • Healthcare and Family Services
    401 South Clinton
    Chicago, IL 60607

How to submit public comments

HFS now invites families and the public to comment on these proposed amendments through April 22.

You can submit feedback in two ways:

• Email HFS.HCBSWaiver@illinois.gov
• Mail written input to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Avenue E., 2FL, Springfield, IL 62763

HFS and the Division of Specialized Care for Children will review the comments and respond to them.

We will then submit comments to the federal Centers for Medicare and Medicaid Services as part of the amendment approval process.

Our NurseNet and Provider Portal sites will be briefly unavailable starting at 8 p.m. on March 14

The Division of Specialized Care for Children (DSCC) will perform scheduled maintenance on our claims processing system and applications from 8 to 9 p.m. this Saturday, March 14.

During this time, our Provider Portal and NurseNet site will be temporarily unavailable.

If you have any questions or concerns about the downtime, please email dsccexternalhelp@uic.edu. 

We appreciate your understanding and continued partnership!  

DSCC participant families, please be on the lookout for our annual family survey on Feb. 10.

Participant families, we want to hear from you!

Our annual family survey is coming soon, and your feedback helps us better support children, youth and families like yours. You’ll also have the chance to win a gift card. 

All Division of Specialized Care for Children (DSCC) participants will receive the survey starting Feb. 10. You’ll receive the survey by email or mail, based on your preferences.

Quick, Easy and a Chance to Win

• The survey takes less than 10 minutes to complete. 
• Filling it out is optional and will not affect your services. 
• If you respond, you could win one of five $50 Amazon gift cards.*

The survey asks about your experiences with DSCC, including how well our team supports your family and meets your needs.

How Your Feedback Makes a Difference

Your voice leads to real change. This short video shares what families told us during last year’s survey and how we’re using that input to make improvements:

Based on family feedback from last year’s survey:

• We are developing a customer service training for DSCC teams to strengthen our partnership with families. The training will focus on:
  • Communication
  • Teamwork
  • Sensitivity to the needs of children and youth with special healthcare needs
  • Response times
    
• We are also expanding our education and resource efforts to help families feel more informed, connected and supported through proactive care coordination.

You can learn more about how we use family feedback on our Family Surveys page.

Please be on the lookout for our annual survey on Feb. 10.

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

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

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

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!

Join us as we grow our online community to share resources, family stories and more.

The Division of Specialized Care for Children (DSCC) is now on Instagram!

Follow @UICDSCC to stay connected and find:

• Helpful resources and tips for navigating care and services
• Family stories that celebrate our participants’ strength and unique experiences
• Upcoming events and learning opportunities
• Encouragement and inspiration from families and DSCC team members across the state

Follow @UICDSCC on Instagram

Our Instagram page is another way we’re working to keep you informed, supported and connected to the information and resources you need. 

We can’t wait to see you there! 

DSCC can help our participant families find food pantries and other resources as the federal government shutdown continues.

UPDATED on Nov. 14, 2025 – The Illinois Department of Human Services says it’s working to distribute full Supplemental Nutrition Assistance Program (SNAP) benefits now that the federal government shutdown has ended.

IDHS expects the remaining benefit payments to be made over the coming days, with all SNAP recipients receiving their full November benefits by Nov. 20.

To check your Electronic Benefits Transfer (EBT) Card balance, visit IDHS: Illinois Link Card or call the Illinois Link Help Line at (800) 678-LINK (5456). 

SNAP recipients can still use their benefits left on cards from previous months.

Visit snapfederalimpact.illinois.gov for the most up-to-date information from IDHS and to find food in your community.

Resources for Where to Find Food

If your family is affected by this change or needs food support, there are many local and statewide resources available:

• IDHS: Find Food website
• Find Food IL Community Food Map
• Find Food – We Got You Illinois
• Find Food – Feeding Illinois
• Find a Food Pantry or Food Bank in Illinois
• Chicago Food Programs – Greater Chicago Food Depository
• Illinois Department on Aging’s Provider Profile Search
• FoodFinder interactive food assistance map
• Freefood.org
• Findhelp.org resource locator
• 211 food programs and food benefits information
• USDA National Hunger Hotline at (866) 348-6479
• The Free Formula Exchange

These resources can help families locate nearby food pantries, meal programs and other nutrition supports. You can also find more information about local food pantries and other resources in our online Resource Directory.

If you have questions or need more assistance, please contact your Division of Specialized Care for Children (DSCC) Care Coordinator. We are here to help!

Details about our updated phone menu to help families more quickly connect with our team

It’s important that you can reach the right team member whenever you need help or have questions.

We want to share our updated phone menu to help you more quickly connect with our staff.  

Our updated phone menu options are: 

• Press 1 for Customer Service
• Press 3 to Dial by Extension
• Press 4 for Language Line

Please note: If you need to reach a staff member directly by their extension, you must first select option 3 (“Dial by Extension”).

Entering the extension at the start of your call will automatically connect you with our Customer Service team. Option 2 (the old Language Line) is no longer available.

We understand this change may be new and want to ensure you can get to the right person without any confusion. If you have questions or need assistance, our Customer Service team is happy to help explain these options when you call.

Our toll-free number, (800) 322-3722, remains the simplest and fastest way to reach anyone at DSCC. 

Saving our toll-free (800) number and updating your Care Coordinator’s extension number in your phone’s contact list can help:

• Prevent you from mistaking our calls as spam, ensuring you receive important updates and support from your care coordination team 
• Save time when you need to call us for assistance or have questions
• Ensure smoother communication whenever you need support or would like to share feedback

You may also reach us electronically through our general dscc@uic.edu email address or our Contact Us or Request a Callback forms on our website.

Save Time With the DSCC Family Portal

Our DSCC Family Portal is also available to help you communicate and share information more easily with your care coordination team.

You can use the Family Portal to:

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

To help you get started, we’ve created several tip sheets and videos for how to use the Family Portal. You can find these resources on our website’s Family Portal page.

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 hope you’ll take advantage of this helpful tool!

Find out what our participant families can expect as we continue to roll out CarePay, our new claims processing system

We want to share our progress as we implement a new claims system and explain what this change means for you. 

In May, the Division of Specialized Care for Children (DSCC) launched our new claims processing system called CarePay. We developed CarePay to offer faster and more efficient claims processing. 

We are continuing to work through the initial rollout and its related issues. Here is what our participant families can expect and need to know: 

For Core Program Families

As we move to CarePay, you may experience some temporary delays with our claims processing. It could take up to 30 days for us to pay a claim. 

If you or your child’s provider has been waiting for a claim payment for longer than 30 days, please contact us. We can verify that we have properly received your claim submission and investigate any issues.

If you have experienced a significant delay with a claims payment, please bring it to the attention of your care coordination team so we can help you. 

For Home Care Program Families

• We are continuing to issue payments to nursing agencies at the updated 2025 rates. The rate increase received the necessary federal approvals in April, with an effective date of Jan. 1, 2025.
• We continue to work with our claims system developers on a plan for issuing “top-off” payments for adjusted claims we received between January and when CarePay went live.
• It is important for your nursing agency to double-check the accuracy of the claims it submits for reimbursement as we process these payments.

We understand that timely claims processing is important to you and your providers. We’re committed to resolving any issues as quickly as possible and ensuring you receive the support you need.

Thank you for your patience and partnership as we work through this transition.

If you have any questions or concerns, please don’t hesitate to contact us at (800) 322-3722. 

The council is a great opportunity to share your voice and help improve transition support for youth across Illinois.

Calling all teens and young adults with special healthcare needs in Illinois!

Would you like to make a difference? Your voice can help shape programs and services for youth like you across the state.

We are looking for new members to join our Youth Advisory Council (YAC).

The YAC is an opportunity to share your feedback and help improve planning for the transition to adulthood. You can also strengthen your leadership skills and connect with other youth.

As a YAC member, you can:

• Learn about and help improve how the transition to adulthood works for Illinois youth with special healthcare needs
• Help us gain a better understanding of your and your peers’ transition needs
• Give a voice to what matters most to you
• Gain valuable leadership and advocacy experience
• Expand your network

The council is open to all Illinois youth ages 15 to 24 with special healthcare needs.

You do not need to be a Division of Specialized Care for Children (DSCC) participant to join.

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. 21812.

Your perspective matters!

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.