New approval process for respite care for individuals enrolled in the MFTD waiver begins on Sept. 1

Families enrolled in the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile Technology Dependent (MFTD waiver) will see a new approval process for respite nursing services.

This change will help make respite nursing services more respectful of your wishes.

Starting Sept. 1, 2025, nursing agencies must get your permission and official approval from the Division of Specialized Care for Children (DSCC) before providing respite care to your child. This means a nursing agency or respite facility cannot use your respite hours unless you ask for them and agree to the plan.

Why This Change Is Important

We are making this change because families shared concerns that agencies and/or facilities used their respite care hours without their knowledge or permission. We want to make sure:

• You are always in control of when and how your family uses respite care.
• Respite services follow Medicaid and MFTD waiver rules.
• You know exactly how many respite hours are used and when.

What You Need to Know

• Each year, families in the MFTD waiver get 336 hours of respite care.
• Respite care is only available if the legally responsible adult (LRA) asks for it.
• Nursing agencies cannot use respite hours without your clear permission.
• If you request respite, the agency must fill out a form and get approval from DSCC before care begins.
• Respite hours don’t roll over to the next year and can’t be used as overtime.

If you think your child needs respite care, talk to your nursing agency about how many hours you want and when you need them. Please give them as much notice as possible (at least two business days before you need the care).

Your nursing agency will then contact DSCC to submit your request.

If something comes up at the end of the month and you need extra help, please talk with your nursing agency. They can work with you to request respite.

If you have any questions, please reach out to your DSCC Care Coordinator. They are here to support you through this process.

Thank you for your cooperation and partnership!

Nearly 20 Illinois families gained valuable knowledge, support and connection for raising a child with hearing loss during the annual Institute in June  

June 10-14, 2025, marked 80 years of the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

This free, annual program is for parents and caregivers of children ages 6 and under who have an identified hearing loss. It helps families learn, connect, and find support all in one place.

Since 1945, the Institute has welcomed families at the Illinois School for the Deaf (ISD) campus in Jacksonville. This year, 18 families from across the state found community and connection at this five-day program.

The Division of Specialized Care for Children (DSCC) helps support the Institute, along with other sponsors.

Support for the Whole Family

The Institute is more than a learning program for parents. It’s a family-friendly event where everyone can join in.

“It really is a valuable experience for everyone who comes,” said Angela Kuhn, director of the Institute and an administrator at ISD. “It’s an event that is inclusive of everyone in your family.”

Parents Rogelio and Lizeth came to the Institute with their 10-year-old son, Roger, and their 2-year-old daughter, Aliah. Aliah was born with Microtia, a condition that affects the shape of the ear and causes hearing loss.

Their family came to the Institute to learn how to best support her development.

“We have learned a lot, how to help my daughter and how to make us stronger, how to defend her, how to prepare her for the future,” shared Lizeth.

“My son Roger has been learning how to help his sister,” added Rogelio.

While Aliah was busy playing with her peers and receiving evaluations from professionals, Rogelio and Lizeth spent their time in workshops and lectures for parents. Roger joined the sibling program, where he took American Sign Language (ASL) lessons and made friends with other siblings of children who are deaf or hard of hearing.

By the end of the week, Roger had formed a close bond with other siblings in the program, including Michael (7), Neela (11), and Jezreel (12).

“I wasn’t expecting that…”

Michael came to the Institute with his mom, Brittany, and his younger siblings—Dominic (age 1) and Gianna (age 5). Gianna is profoundly deaf and has CHARGE syndrome, a rare genetic condition that affects multiple parts of the body.

At first, Michael wasn’t sure what to expect. “I expected that it wouldn’t really be that fun, I wouldn’t meet any kids to play with,” he said. “But I guess I did—and it was really fun.”

Michael and his new friends spent almost every moment together.

“He’s just like, ‘Hi, Mom. Bye, Mom.’ And I’m like, ‘Oh, okay, bye,” Brittany said with a smile.

“I wasn’t expecting that part to be so neat,” she said. “To see them as strangers on Tuesday and then to watch them eating lunch together, being inseparable, that was really cool.”

Extraordinary Connections

Institute and ISD preschool teacher Natalie Garver explained how attendees transform from strangers at the start to a close-knit family by the end.

“It’s so cool how we show up day one and everyone’s kind of looking around like, ‘Was this a good idea? This seems kind of awkward.’ By the last day of Parent Institute, it’s like, ‘Bye, we’re going to miss you. Like, let’s keep in touch, find me on Facebook,’” she described.

“When you share this kind of experience with other people, the connection you can make with families is just extraordinary in such a short amount of time.”

Natalie has taught children who are deaf or hard of hearing for 17 years. She has worked at the Institute for several of those years. Natalie is one of many returning team members who make the experience feel like home for families.

“The staff here does a really good job of making it almost a family setting and culture,” said Institute parent Brent.

Brent and his wife Rebecca are the proud parents of Cash, age 5. They live in Jacksonville where Cash, who uses cochlear implants, is a student at ISD.

 “It’s our job as parents to stay informed and stay involved and keep learning,” Rebecca said. “The Parent Institute is perfect for that.”

“There’s a community for us and they’re closer than we think.”

While Cash and his family are locals, many families travel from all over Illinois to attend the Institute.

Cindi and her 2-year-old daughter, Luna, made the trip from the north side of Chicago. Luna is the first person in her family to be diagnosed with hearing loss.

“This is all brand new. I felt lost, like nobody around the neighborhood that I know of had children with hearing loss,” said Cindi.

“Coming here, I’ve connected with so many parents. I actually found a neighbor, not literally a neighbor, but she’s so close by that we take our kids to the same playground, and we never even noticed. So, it’s been great. There’s a community for us and they’re closer than we think.”

DSCC Family Liaison Violet Wiker, who helps families enroll in the Institute, emphasized the value of these new friendships and their lasting impact.

“I think it’s very wonderful when you walk around the cafeteria and you can hear the kids scream across the line asking mom if they can sit with their new friend…” Violet said.

“And then you see mom and dad making another friend at the lunch table, and they’re sharing experiences and they’re not even in the same location, but they found a friend that maybe they can take home with them and connect with later to say, ‘Hey, I’m feeling this sort of way,’ or’ Hey, do you have a suggestion here?’ And we built that network now.”

Looking Ahead

The 80^th year of the institute was full of learning, laughter, and new friendships. Families left with more knowledge, stronger support systems, and lasting memories.

Tori Lynch, an Institute cadet, looks forward to the Institute’s bright future. “I have no doubt it’ll go on 80 more years.”

Find more memories from the 2025 Institute on our Facebook page in our 2025 recap album. You can also see videos that highlight different parts of the Institute experience on our YouTube playlist.

The following organizations supported the 2025 Institute:

• University of Illinois Chicago’s Division of Specialized Care for Children (DSCC)
• Department of Human Services – Division of Rehabilitation Services
• Illinois School for the Deaf
• Illinois State Board of Education
• Illinois Department of Public Health
• Ann & Robert H. Lurie Children’s Hospital of Chicago

For more information about the Institute and how DSCC supports children with hearing loss, call (800) 322-3722 or email dsccinstitute@uic.edu.

Check out our summer camp list to explore opportunities and find the right fit for your camper

Does your child want to make new friends? Develop new skills? Meet others with their condition or become more independent?

Head to our 2025 summer camp list. You’ll find accessible day, overnight and family camps across Illinois and beyond.

These programs welcome campers with a wide range of needs, abilities and many of our Core Program’s eligible medical conditions. The camps also cater to a wide range of interests, including:

• Learning to program and other computer skills
• Building independence and self-advocacy skills
• Exploring the great outdoors
• Cooking, art, drama and more

If you’re looking for the perfect camp opportunity, there are several ways to search on our website:

• Use the search box and filter option on our Events page to search for camps and other related keywords and locations
• View our 2025 summer camp list
• Use our Events Calendar view

Our list continues to grow, so check back often!

PLEASE NOTE: we share these opportunities for information purposes only. The Division of Specialized Care for Children (DSCC) does not manage or coordinate these camp opportunities or programs. If you have questions about a specific camp, please use the contact number or website we list for each program.

If you know of any summer camp opportunities we should add, please send us the details at dscc@uic.edu.

Here’s to a fantastic summer filled with smiles and new experiences!

Learn more about the MFTD, DRS and DDD Medicaid waivers and how they can help your family

Our annual Health Insurance Education Series returns in March to help families understand important health insurance topics.

In response to family feedback, our 2025 series will explain Medicaid Home and Community-Based Services Waiver Programs for Illinois.

The webinars are open to Division of Specialized Care for Children (DSCC) participants, their family members and anyone interested in these topics.

These free virtual trainings will feature DSCC team members and other presenters covering a different waiver each month:

• Medically Fragile and Technology Dependent (MFTD) Medicaid Waiver, March 11 at 6 p.m.
  
  • The March presentation will focus on the Medically Fragile and Technology Dependent Waiver for children and adults. Presenters from DSCC will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
    
  • See the MFTD Medicaid Waiver flyer
  • Register on Zoom for MFTD Medicaid Waiver

• Division of Rehabilitation Services (DRS) Medicaid Waivers, April 8 at 6 p.m.
  
  • The April presentation will focus on the different waivers available for children and young adults through the Division of Rehabilitation Services (DRS). Presenters from DRS will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
    
  • See the DRS Medicaid Waivers flyer
  • Register on Zoom for DRS Medicaid Waivers
    
• Division of Developmental Disabilities (DDD) Medicaid Waivers, May 13 at 6 p.m.
  
  • The May presentation will focus on the different waivers for children and young adults available through the Division of Developmental Disabilities (DDD). Presenters from DDD will explain how to apply, who is eligible, what benefits are available, and how to use the benefits.
    
  • See the DDD Medicaid Waivers flyer
  • Register on Zoom for DDD Medicaid Waivers
    
• La Excepción de Medicaid para personas médicamente frágiles y dependientes de la tecnología (MFTD), 11 de marzo, a las 6 p.m.
  
  • La presentación de marzo se centrará en la excepción para personas médicamente frágiles y dependientes de la tecnología para niños y adultos. Los presentadores de la División de Atención Especializada para Niños (DSCC) le explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
    
  • Consulte el folleto de Beneficios de MFTD para obtener más detalles.
  • Registrarse para MFTD en Zoom.
    
• Excepciones de Medicaid de la División de Servicios de Rehabilitación (DRS), 8 de abril a las 6 p.m.
  
  • La presentación de abril se centrará en las diferentes excepciones disponibles para niños y adultos jóvenes a través de la División de Servicios de Rehabilitación (DRS). Los presentadores de DRS explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
    
  • Consulte el folleto de Excepciones de Medicaid de la DRS para obtener más detalles.
  • Registrarse para Excepciones de Medicaid de la DRS en Zoom.

• Excepciones de Medicaid de la División de Discapacidades del Desarrollo (DDD), 13 de mayo a las 6 p.m.
  
  • La presentación de mayo se centrará en las diferentes excepciones para niños y adultos jóvenes disponibles a través de la División de Discapacidades del Desarrollo (DDD). Los presentadores de DDD explicarán cómo presentar la solicitud, quién es elegible, qué beneficios están disponibles y cómo utilizarlos.
    
  • Consulte el folleto de Excepciones de Medicaid de la DDD para obtener más detalles.
  • Registrarse para Excepciones de Medicaid de la DDD en Zoom.

You can also:

• Download a flyer with all Health Insurance Education Series topics and registration links. (The flyer is also available in Spanish.)
• See details about each series session on our Events page.
• Watch the session recordings and access related materials anytime on our Family Education Webinars page.

Our Health Insurance Education Series began in response to questions and suggestions from our Family Advisory Council.

If you have questions about these webinars before or after a session, please email dscc@uic.edu or call (800) 322-3722.

Our annual family survey is an easy way to share your input and help improve our services.

Attention participant families, be sure to watch your mail or email!

On Feb. 10, 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 by email or mail, based on your preferences. If you respond, you could win one of five $50 Amazon gift cards.*

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

Your ideas and feedback help improve our services to families like yours. We used family input from last year’s survey to:

• Train our care coordination teams to better understand the family perspective and tailor services to your unique needs and wants. 
• Educate families about the benefits of our DSCC Family Portal to easily communicate and share information with your care coordination team.
• Launch NurseNet, a new online tool to help families connect with available in-home nurses.
• Offer free webinars on important health insurance topics affecting families.
• Improve our language access to better support our families’ diverse backgrounds.
• Reorganize our Chicago offices to better serve the Chicago community.

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!

DSCC honors Meeka Hudson for her dedication to supporting Illinois children and youth with special healthcare needs and their families

Care Coordinator Meeka Hudson is the 2024 recipient of the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Award of Merit.

The award recognizes exceptional employees for outstanding dedication and service to Illinois children with special healthcare needs and their families.

Meeka is a Care Coordinator in the Mokena Regional Office. She joined the Core Program team in 2018 and has played an invaluable role in empowering families ever since.

“Meeka is an exceptional Care Coordinator with a passion for helping her participant families navigate difficult situations and finding ways to reduce stress in their lives,” DSCC Executive Director Thomas F. Jerkovitz said.

“Her teammates praise her dedication, knowledge of resources and willingness to help. Meeka has also been instrumental in developing valuable education and networking opportunities for families based at the Mokena office.”

Meeka’s colleagues in the Mokena office nominated her for the award, noting her positive influence, expertise, compassion and creativity.

“Meeka’s dedication to her role is evident in everything she does,” Mokena Assistant Regional Manager Tami L. Peleckis said. “She is always ready to lend a hand, provide guidance, and share her expertise with her colleagues. Her positive attitude and willingness to go the extra mile make her an indispensable asset to our team.”

Program Coordinator Assistant Leslie Leske-Ely praised Meeka’s ability to break down information into manageable steps and empower families to take charge of their situations.

“She provides positive and innovating contributions to our office. Her ideas help in improving our office morale and family engagement,” Bilingual Care Coordinator Ana Lule said. “Meeka consistently goes above and beyond to ensure that families receive the support and resources they need. She approaches every case with empathy and a genuine desire to make a positive impact.”

Mokena Regional Manager Deanna Deleshe has worked with Meeka since she started at DSCC. When Meeka’s participant families wanted a space to network with other families in their same situation, Meeka saw a need and shared an idea with Deanna.

“Meeka was the inspiration behind our pilot of the Mokena Family Networking and Education Group called the Mokena Connection,” Deanna said. “Meeka also, along with other team members, was the inspiration behind all of our in-person office events (for participant families). We do our Winter Wonderland, our Spring Fling, our Summer Extravaganza and our Trunk or Treat.”

Meeka said she is “deeply honored and incredibly grateful to receive the 2024 Award of Merit.”

“This recognition is not just a personal achievement, but a reflection of the support, encouragement and inspiration I’ve received from the Mokena Regional Office Team,” Meeka continued. “I am truly fortunate to work alongside such talented, dedicated individuals.”

Meeka thanked DSCC’s leadership and added a special thank you to her managers Deanna and Tami, whose belief in her has made all the difference.

“This award is a testament to the teamwork, hard work, and passion that we put into everything we do,” she said.

Learn more about Meeka and her exceptional service to families in this video below:

DSCC staff nominated a total of 13 of their colleagues for this year’s Merit Award. As the winner, Meeka will receive a Merit Award memento, a $2,500 award and recognition from the Executive Director.

Congratulations to the rest of our 2024 DSCC Award of Merit Nominees:

• Daniel “Dan” Beagles, Training and Development Specialist, Mokena Regional Office (RO)
• Becky Helmink, Program Coordinator Assistant, Olney RO
• Andrea Hoskinson, Assistant Director Operations-Finance, Accounting and Procurement, Central Administrative Office (CAO)
• Amanda Kaufman, Care Coordinator, Home Care (HC) Region 3
• Cristina Lazala, Bilingual Program Coordinator Assistant, HC Region 2
• Cathleen “Cathy” Morrissey, Program Coordinator Assistant, Mokena RO
• Patricia Perez, Assistant Director of Operations-Research and Practice Initiatives, Chicago RO
• Yariela “Yari” Ramirez Beccue, Program Services Specialist, CAO
• Mary Ratermann, HC enrollment Specialist, St. Clair RO
• Adell Scott, Manager of HC Quality Improvement, St. Clair RO
• Paige Town, Assistant Regional Manager, Rockford RO
• Imani Wornum, Care Coordinator, HC Region 5

Learn more about all of the 2024 nominees in this recap video of the Award of Merit luncheon on Oct. 29 in Springfield:

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!

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.

An overview of key changes affecting all Division of Specialized Care for Children participants now that the public health emergency is over

The public health emergency due to the COVID-19 pandemic ended on May 11, 2023.

This ending brings a variety of changes for our Division of Specialized Care for Children (DSCC) participant families. These changes include a return to in-person visits from DSCC Care Coordinators, an end to verbal signatures and more.

The following sections give an overview of key points and important dates to remember:

• Reminders for All DSCC Program Participants
• Reminders for Home Care Program Participants
• Important Medicaid/Insurance Updates for All DSCC Participants in Medicaid
• Contact Reminders for All DSCC Program Participants

Reminders for All DSCC Program Participants

Return to In-Person Visits

Meeting in person with our participants and families is an important part of care coordination. The public health emergency allowed face-to-face visits to occur virtually. Now that the public health emergency has ended, we must return to face-to-face meetings with our participants. 

Your DSCC Care Coordinator will work with you in advance to schedule your next in-person/home visit.  We understand that in-person visits with your Care Coordinator may be a change for you and your family. We paused these visits for several years during the public health emergency (though many families continued to meet with their Care Coordinator during the pandemic). 

Seeing you in person helps us get to know you and your family better. It can also help improve your connection with your DSCC Care Coordinator. Our partnership with Medicaid and Medicaid managed care plans also requires us to meet with you in person. If you have any concerns about in-person visits, please talk to your Care Coordinator. We will work with you to see how to best accommodate your preferences.

Verbal Signatures

The public health emergency allowed your Care Coordinator to receive necessary signatures verbally. As of May 11, 2023, it is a federal rule that DSCC can no longer accept verbal signatures.

• Electronic signature options (such as through Adobe) remain an option for families when signing DSCC documents.

Reminders for Home Care Program Participants

End of Continued Medicaid and Program Enrollment for Those Found Ineligibile for Services

Starting April 1, 2023, DSCC began working with the Illinois Department of Healthcare and Family Services (HFS) to reassess all Home Care Program participants who received a notice of ineligibility for the program since March 1, 2020. Now that the public health emergency has ended, HFS’ notices accurately list the approved level of services for you or your child.

• If you or your child received a notice of ineligibility for services since March 1, 2020, your services will remain in place until HFS completes a reassessment. The reassessment looks at your updated and current medical documentation and will occur before Sept. 30, 2023.
• If you or your child received a notice of reduced nursing hours since March 1, 2020, your Care Coordinator will complete the next reassessment of services at your regularly scheduled renewal time. Services will remain in place until this reassessment occurs.

Reminders for Individuals in the Non-Waiver Program (Nursing and Personal Care Services)

Now that the public health emergency has ended, all individuals who turn 21 and are not on the Home and Community-Based Services Waiver for Those Who Are Medically Fragile Technology Dependent (MFTD), will not be eligible for services. If you or your child were on non-waiver services and turned 21 between the dates of March 1, 2020, and March 31, 2023, services will end on Sept. 30, 2023. Your Care Coordinator will work with you to ensure you or your child is set with an alternate state waiver, such as the Division of Rehabilitative Services (DRS), if applicable.

For all non-waiver participants under age 21, you must continue to have Medicaid coverage to receive Home Care services. It is important that you submit the redetermination form from Medicaid to keep your coverage. If you fail to meet Medicaid eligibility or do not respond in time, HFS will cancel your Medicaid case. Your Home Care services will then also end.

Additional COVID-19 Respite Allotment

During the public health emergency, HFS approved an additional 336 hours of respite to use before the regular respite allotment. This additional respite is for all Home Care MFTD waiver participants. Starting Nov. 11, 2023, this additional COVID respite will expire. All respite used after Nov. 11, 2023, will come from the standard respite allotment.

Personal Protective Equipment (PPE)

During the public health emergency, nursing agencies were reimbursed for PPE when actively staffing nurses in the home. The PPE is for the nurses to use while caring for participants. This reimbursement of PPE supplies to the nursing agencies will end on Nov. 11, 2023.

Nursing Supervisory Visits

Nursing agencies resumed in-person supervisory visits in November 2020. Effective May 11, 2023, there can be no exceptions to replace in-person supervisory visits.

Important Medicaid/Insurance Updates for All DSCC Participants in Medicaid

These next sections explain important Medicaid updates now that the public health emergency and continuous Medicaid coverage period has ended. The end of the public health emergency may also affect your Medicaid coverage or your private health insurance coverage.

No More Copays or Premiums for Medicaid

Most Medicaid programs no longer have premiums or copays. All Kids Assist, Aid to the Aged Blind and Disabled (AABD) and Adult Medicaid do not have monthly premiums or copays for services. All Kids Premium 1, Premium 2 and Share programs are all called All Kids Assist now.

Medical Redetermination for Medicaid

Redetermination is when Medicaid looks to see if you are still eligible. They look at your residency, monthly income and other criteria to decide if you still qualify.

Medicaid sent forms to some members as early as May 2023. They will not complete redetermination on all cases at the same time. They will make the redeterminations over several months. This means that your Medicaid redetermination could happen now or later, even next year. It is important to make sure Medicaid has your current address. You can report your address online at Medicaid.illinois.gov or call (877) 805-5312. We also have a news post with more details about how to update your address.
Please watch your mail for letters from Medicaid.

Once you receive your redetermination notice, you will have about a month to respond. Medicaid may ask for more information about your income, residency or other information. If Medicaid asks for more information and you do not respond, your Medicaid coverage ends. You can return the redetermination in several ways:

1. Online at ABE.illinois.gov using Manage My Case. Manage My Case is the quickest way to complete your redetermination.
2. By mail.
3. In person at a local Illinois Department of Human Services (DHS) Family Community Resource Center.
4. By phone.

If you are in a Medicaid managed care plan (MCO), please remember the MCO does not do the redetermination. Medicaid does redetermination reviews. If you do not qualify for Medicaid anymore, your coverage ends. If you are still eligible, you keep your Medicaid coverage.

Don’t risk losing your health insurance. Please update your address with Illinois Medicaid. It’s easy, fast and free:

• Call (877) 805-5312 from 7:45 a.m. to 4:30 p.m., Monday through Friday.
• Visit medicaid.illinois.gov.
• If you use a TTY, call (877) 204-1012.

Please contact your DSCC Care Coordinator if you have questions about Medicaid redetermination.

Telehealth Coverage

Telehealth coverage for Medicaid (and other insurances) is a permanent change and will continue after the public health emergency to give Medicaid time to review for any future changes. You can review the HFS Provider Notice issued May 9, 2023, on Telehealth to learn more.

An Illinois law signed in 2021 requires insurance to cover telehealth through 2027. This law does not require that practitioners or providers offer telehealth services. Therefore, your providers may not offer telehealth care. The law only says that insurance must pay providers for telehealth care if they provide it.

Pharmacy Billing and Prior Approval Requirements

Pharmacy billing and prior approval requirements for Medicaid will resume. There were many flexibilities that allowed Medicaid members to get medications. These include overriding the refill too soon and waiving requirements for the preferred drug list, quantity and brand limits. If you go to the pharmacy and they tell you that you can’t get your medications, ask your doctor to submit a prior approval to Medicaid. You can review the HFS Provider Notice issued May 3, 2023, on Pharmacy Billing to learn more. Contact your DSCC Care Coordinator for more help.

DME and Therapy Prior Approval Requirements

DME and therapy prior approval requirements for Medicaid will resume. There are some services that Medicaid did not require a prior approval for during the public health emergency. These services include therapy, home health and some durable medical equipment (DME). It is important for your providers to get a prior approval so that Medicaid reviews medical eligibility for the services. You can review the HFS Provider Notice issued April 4, 2023, on Prior Approval Requirements for more details. Contact your DSCC Care Coordinator for more help.

COVID-19 Tests, Treatment, and Vaccines

Uninsured individuals will no longer get access to special COVID-19 Medicaid eligibility which included testing, services, treatment, and vaccine administration during the public health emergency. You can view the HFS Provider Notice issued May 9, 2023,  on Uninsured Population Special COVID-19 Coverage. Medicaid members who do have eligibility will continue to be able to access treatment, testing and vaccines.

Those with private insurance should also be able to continue to access treatment and vaccines as outlined by their plan.

Insurance plans will no longer cover over-the-counter tests for COVID-19  for free. Generally, a doctor will need to order the test and provide them in an office or similar facility. This may vary from plan to plan. You should call your insurance plan if you have questions. There may also be community organizations or public health departments still distributing COVID-19 tests and related services, such as vaccines, for free.

Extension of COBRA

During the public health emergency,  there was an extension of election and notice deadlines for someone to take COBRA after losing or leaving a job. That will expire 60 days after May 11, 2023.

Temporary Special Enrollment Period

For individuals who no longer qualify for Medicaid after they go through redetermination, there is a special open enrollment period through the federal health insurance marketplace to purchase private insurance. It will extend from March 31, 2023, to July 31, 2024. This is only for people with a special qualifying event, such as losing coverage. Otherwise, the regular open enrollment period will be in November and December for individuals who need to enroll in private insurance through the marketplace. The Illinois website is GetCovered.illinois.gov and the federal website is HealthCare.gov.

Questions? Contact Us!

As a DSCC participant family, you can contact us with any questions or support your family needs.

Please note the best way to reach your care coordination team or any DSCC office is through our toll-free number of (800) 322-3722.

You can use this number to dial your Care Coordinator’s direct extension or to have our Customer Service Representatives connect you with the right person/team.

We have updated our phone system and ask everyone to use the (800) 322-3722 number as the simplest and fastest way to reach us.

Our office hours are 8 a.m. to 4:30 p.m. Please talk to your Care Coordinator if you have a need to speak outside of business hours.

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

Please talk with your Care Coordinator if you have more questions or need to update your communication preferences.

We are thankful for your partnership throughout the changes related to the end of the pandemic and public health emergency. Our team will continue to help support your family and connect you with the right services and resources.