DSCC Helps Give One Family a Safer Night’s Sleep

April 8th, 2026

A young adult smiles as she sits on her bed in her pink and purple bedroom.

A DSCC Care Coordinator partnered with community organizations to create a custom SeizureSense alert system for a teen with complex needs and her deaf parents.

Getting the right amount of sleep each night can be difficult for anyone.

For Melissa and Tim Kearney, it can be especially hard. Keeping their daughter, Makaelyn, safe is an around-the-clock job that doesn’t stop when they go to bed.

This monitoring proved challenging for Melissa and Tim, both of whom are deaf and hard of hearing. Melissa also has cerebral palsy, which makes getting out of bed quickly more challenging.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is an important partner in helping the Kearney family navigate Makaelyn’s challenges. DSCC Care Coordinator Court Prather worked alongside Tim and Melissa for months to help them find an alert system that would meet their needs.

The hard work paid off, and Court connected the family with two organizations that could brainstorm a solution and provide funds for a custom alert system.

Thanks to Medlaunch UIUC and the Danny Did Foundation, Tim and Melissa can now rest easier knowing they have a safe and effective “SeizureSense” alert system.

“I can’t stop thinking about Makaelyn getting up and wandering or having a seizure. I’m up and down all night, checking to be sure she’s okay.” Tim explained. “Having an alarm that lets me know she’s up or having a seizure is a life-changer. Who knows? I might end up with a whole new personality thanks to getting a peaceful night’s sleep.”

Over a year in the making

The MedLaunch team hold the SeizureSense Safety Alert System next to Makaelyn, a young adult, her parents, caregiver and care coordinator. They smile outside the family home.
Group photo outside of Makaelyn’s house. Front row (from left to right): Melissa, Makaelyn, Talia and Court. Back row (from left to right: Tim, Ryan, Hussein, Kriti, Eric and Matthew.

The journey to develop the “SeizureSense” alert system for the Kearneys was long and filled with roadblocks.

“This alert system project has been over a year in the making,” Court explained. “We looked everywhere for an existing monitor system to catch Makaelyn’s seizures at night. We found an app that could be installed on a phone and would vibrate, but the vibration level was just not enough. The other systems we found in the U.S. all had an audible alert.”

Court wasn’t giving up.

“There was no straight path or easy answer for this challenge,” Court explained. “I spent a lot of time doing research, making calls and trying to get all the pieces and people to connect throughout the process.”

Everything changed when Court discovered the Danny Did Foundation and sent a project application to MedLaunch UIUC.

The Danny Did Foundation focuses on raising awareness about epilepsy, preventing Sudden Unexpected Death in Epilepsy (SUDEP), and helping families with seizure detection and prediction devices that may help to prevent seizure-related deaths.

MedLaunch UIUC is a student-led organization at the University of Illinois Urbana-Champaign. Students from a variety of majors and perspectives work with individuals with disabilities to design, build, and deliver devices that improve their independence and quality of life. MedLaunch accepts project applications each fall. Five or six teams review submissions. Each team chooses a project to tackle during the school year.

“The Danny Did Foundation was incredibly helpful,” Court said, noting the foundation awarded the family a grant and paid for the alert monitor.

“It was exciting to have MedLaunch take on our project and get to work tailoring the device to the Kearney family’s needs,” Court added.

The pieces started coming together to make an alert system for the family possible. “At each step, Court helped coordinate interpreters, project meetings, approvals and other details to keep the process moving forward.”

A passion for accessibility and creating person-centered solutions

A team of six students from UIUC's MedLaunch organization pose for a group photo in their breakroom.
MedLaunch team members (from left to right) Ryan Sullivan, Mustafa Khan, Eric Vo, Noreen Adoni, Leyna Tran and Maya Ramavarapu.

MedLaunch Team members come from diverse backgrounds, including computer science, engineering, communications and more. Their love for tackling tough challenges and unique situations unites them.

“I’m studying engineering but hope to go to medical school,” said team lead Ryan Sullivan. “Our design process focuses on developing a product to fit a person’s specific needs. We get to brainstorm together, create products, and be very hands-on in helping people and making an impact. It’s very fulfilling.”

Tackling specific issues and unique situations inspires members to return to the club year after year. SeizureSense team members each had two or more years of experience with the club.

Court, Melissa and Tim, and their American Sign Language (ASL) interpreter, Teresa Fulling, were impressed with the Medlaunch team’s attention to detail and passion for accessibility.

“Everyone asked a lot of good questions that helped us narrow down and focus on what we needed,” Melissa explained. “We travel sometimes, but I didn’t think about making the alert system portable. Our (MedLaunch) team did! Keeping that in mind made a big difference in helping us figure out the best way to move forward.”

Throughout the process, the SeizureSense Team provided updates, asked questions and navigated various challenges.

A UIUC MedLaunch team member shows two parents how to work the SeizureSense Safety Alert System. They stand in a young adult's bedroom, getting ready to install the equipment.
Ryan demonstrates to Melissa and Tim how to use the alert system.

installation day

The family and team felt a strong sense of anticipation and excitement as the SeizureSense installation crew arrived.

After a warm welcome, Ryan Sullivan, Matthew Tan, Hussein Thahab, Kriti Mathur, and Eric Vo unveiled the specialized SeizureSense system to the Kearney family. The system includes:

  • An alert light and vibration component
  • A monitor in Makaelyn’s room that communicate with alert devices in both parents’ bedrooms (they sleep in different rooms due to their medical conditions)
  • A backup battery in case of a power outage
Close up of the SeizureSense Safety Alert System on a bedside table. The alert system has a large red button on top of a clear box with visible wires. There is a tablet next to the alert system which shows the monitored bedroom.
The alert system is within easy reach next to Melissa’s bed.

The first stop was Makaelyn’s room, where team members set up the camera and adjusted the system settings.

Next, the team set up alert system components in Melissa’s and Tim’s bedrooms. Each small, clear acrylic box contains a light and a vibration mechanism to wake the parents if the system detects motion in Makaelyn’s room. Melissa’s device also connects to her computer so that she can see the camera video anytime. 

Tim and Melissa eagerly watched every step. Throughout the setup process, ASL interpreter Teresa interpreted the Kearney’s questions so that team members could provide answers about how each part works and connects to other parts of the system. Court took many photos to document each step for the Kearneys.

Once SeizureSense was in place, the team carefully tested the system. It worked perfectly.

The last test required Tim and Melissa to demonstrate that they could take the system apart, put it back together and adjust the settings as needed.

A huge burden lifted

A parent sets up a SeizureSense Safety Alert System next to her bed so she can safely monitor her daughter at night.
Melissa sets up and tests the alert system in her room.

Melissa says the SeizureSense system is “a huge burden off my shoulders, and I can now sleep more peacefully knowing that we have a ‘night watch’ for our daughter.”

Over the last few months, Court and the MedLaunch team have provided invaluable support to make sure the SeizureSense system continues to work well for the Kearneys.

“The U of I team was truly passionate about solutions and what works best for us parents and what works out for (Makaelyn’s) care needs. They were willing to come back and continue problem-solving so that all different areas were thoroughly taken care of for long-term use at home,” Melissa said.

“I’m impressed with their time, willingness and thorough thinking in many different areas… They don’t give up until the project is totally accomplished!”

The Kearneys also praised Court’s dedication to finding a solution and showing a true understanding of their family’s needs.

“I want to give Court a huge thank you… for Court to connect a variety of different organizations or companies to collaborate or make this work is remarkable,” Melissa said

“Court really helps us to tackle so many barriers, such as making sure K (Makaelyn) has the seizure med support she needs, seizure alert devices, trying helping us with K’s dental barriers and helping (me) with phone calls for services and much more,” Melissa added. “It’s nice having a ‘village’ to support K’s needs in various areas.”

Thank you, Court, for never giving up on the Kearney family’s needs and developing strong partnerships to achieve their goals!

Explore Camp Opportunities for All Abilities With Our Summer Camp List

March 12th, 2026

The text, "Summer Camp," written with chalk on chalkboard next to chalk sticks of different bright colors

Inclusive camps for all ages offer fun, friendships and new adventures!

Are you looking for the perfect camp opportunity for your child or young adult?

Check out our 2026 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 and abilities, including many of our Core Program’s eligible medical conditions. The camps also cater to many different interests, such as:

  • Building independence and self-advocacy skills
  • Participating in adaptive sports
  • Exploring the great outdoors
  • Taking a deeper dive into science, technology, engineering and math (STEM)
  • Cooking, art, drama and more

There are several ways to search for camps on our website:

Our list continues to grow, so check back often!

Be sure to check with your local Special Recreation Association and/or park district programs for day camps near you. Some camp lotteries and programs are now open for registration. Spots will fill up fast.

Please note that DSCC shares these camp opportunities on behalf of other organizations. If you have questions about a specific camp, please contact the camp sponsor or organizer using the listed phone number or website.

If you know about a good summer camp opportunity to add to our list, please send us the details at dscc@uic.edu.

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

Mark Your Calendars for DSCC’s 2026 Family Education Webinar Series!

February 12th, 2026

The text, "Family Education Webinar Series," above graphic images of an open textbook, magnifying glass, computer screen, lightbulb, thought bubble and pencil.

These free webinars will focus on SNAP benefits, estate and financial planning, and caregiver mental health

Our annual education webinar series returns in March with a whole new lineup of topics!

Join the Division of Specialized Care for Children (DSCC) and learn more about key programs and services for Illinois families and caregivers from the comfort of your home.

These free sessions will take place on the second Tuesday of each month and are open to anyone who is interested.

Presenters will cover a different topic each month and answer your questions. 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:

You can also download a flyer with all the Family Education Webinar Series topics and registration links. (The flyer is also available in Spanish.)

Details about each series session are also posted on our Events page.

We began offering our free family webinars in response to questions and suggestions from our Family Advisory Council. The webinars are open to everyone.

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 hope you’ll join us!

Our 2026 Annual Family Survey Is Coming!

January 28th, 2026

The text "Your Feedback Matters" coming out of a megaphone icon

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.

Information Technology Support Associate Earns DSCC’s 2025 Award of Merit

December 8th, 2025

IT Support Associate Zack Alumbaugh receives his Award of Merit nomination certificate from Executive Director Thomas F. Jerkovitz.

DSCC honors Zack Alumbaugh for his outstanding customer service, collaboration and dedication to serving Illinois children and families

Information Technology Support Associate Zack Alumbaugh is the 2025 recipient of the Award of Merit from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

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

Zack joined the DSCC Information Technology (IT) team in 2020 and is based in our Central Administrative Office (CAO) in Springfield. His can-do attitude, dedication to resolving a wide range of IT challenges and kindness have made an impact in Springfield and beyond.

From left to right: Mac Burks, Zack Alumbaugh and Greg Mayes set up an Information Technology desk at the Together Towards Tomorrow Conference in the spring of 2023.
From left to right: Mac Burks, Zack Alumbaugh and Greg Mayes set up an Information Technology desk at the Together Towards Tomorrow Conference in the spring of 2023.

“Zack brings unwavering patience, creative problem-solving and genuine empathy to every interaction and challenge he faces,” DSCC Executive Director Thomas F. Jerkovitz said.

“His expertise and caring attitude have benefited every department at DSCC and given our team members the reliable support they need to best serve our participants. He understands the importance of DSCC’s mission and continually finds new opportunities to improve processes that, in turn, improve outcomes and services for families.”

Zack said he considers his role at DSCC to be much more than a job.

“What we do matters. We help participants and their families get access to assistance and care that makes a difference in their lives. DSCC is a shining example of the way a society can come together to care for each other and improve lives,” he said.

DSCC managers and colleagues nominated Zack for the award. They praise his outstanding contributions to the IT team, exceptional customer service and ability to resolve a wide range of technical issues with patience, professionalism and warmth.  

“Zack skillfully bridges the gap between technology and the people who rely on it, demonstrating an extraordinary ability to anticipate needs and deliver clear, effective solutions. His remarkable capacity for communication has established him as a trusted resource across multiple departments, making him a linchpin in our organization,” said Andrew Nichols, Director of Information Systems, Security, and Compliance.

From left to right: Mac Burks, Zack Alumbaugh and Greg Mayes set up an Information Technology desk at the Together Towards Tomorrow Conference in the spring of 2023.
From left to right: Mac Burks, Zack Alumbaugh and Greg Mayes set up an Information Technology desk at the Together Towards Tomorrow Conference in the spring of 2023.

Whether the project is public-facing or behind the scenes, Assistant Director of Operations for Information Technology Greg Mayes says Zack’s combination of technical ability and exemplary customer service shines through.

“Zack’s incredibly intelligent with a great sense of humor and has a calming presence that puts everyone at ease,” Greg said.

Lombard Core Assistant Regional Manager Celestine Gatson couldn’t agree more.

“Zack’s work always, always, always exemplifies our mission. He’s always willing to be helpful,” Celestine said.

IT Training and Development Specialist Lynda Miller appreciates the many ways Zack “pours his heart into his work.”

“He never gives up on tough issues. He always follows through, and staff tell me how much they appreciate his support and his kindness,” Lynda continued. “Zack exemplifies our mission by collaborating with others, offering dependable support and building strong, trusting relationships across the team.”

Zack also enjoys spreading awareness about DSCC’s programs. He has supported key community outreach events, including the annual Illinois Statewide Transition Conference and the Sensory Station at the Illinois State Fair.

Zack Alumbaugh runs the bean bag toss at the 2023 Illinois State Fair.
Zack Alumbaugh runs the bean bag toss game during DSCC’s outreach at the 2023 Illinois State Fair.

“At events, like the transition conference or other in-person meetings, he is quick to help and understands the importance of the work we do at DSCC. He works hard to ensure that things run smoothly and is willing to help in any way possible to ensure that everyone has a great experience,” said Benefits Management and Data Analytics Manager Brittani Provost.

Springfield and St. Clair Assistant Regional Manager Kathy Thomas praises Zack’s ability to get to the root of an issue and see it through.

“I have also seen him help at the Illinois State Fair. He gets out and talks with the families, playing games with the kids. It is great to see him out there promoting DSCC,” she said.

Zack joined DSCC at the encouragement of his mother, Stephanie Alumbaugh. Stephanie has worked at DSCC for over 20 years and received the Award of Merit herself in 2011 through UIC.

Zack calls this honor a “full-circle moment” for his family. He says he couldn’t be more thankful for the opportunity to work at DSCC and “get to do stuff with tech every day.”

Zack and Stephanie Alumbaugh smile together while working at the Sensory Station at the 2024 Illinois State Fair.
Zack and Stephanie Alumbaugh smile together while working at the Sensory Station during DSCC’s outreach at the 2024 Illinois State Fair.

“I really enjoy getting to help people and maybe teaching them a little bit about how the computer works. It’s just really satisfying for me,” Zack added.

Zack also appreciates how DSCC supports his continued growth and professional development. He’s currently pursuing his master’s degree in Management Information Systems.

Zack says he’s proud to play a role in supporting DSCC participants and their families.

“Knowing what DSCC does…even if you’re having a rough day professionally, that really puts everything in perspective,” Zack said. “I don’t know what else somebody could ask for in a job. We get to help people every day.”

Learn more about Zack and his impact on DSCC in this short video:

DSCC staff nominated a total of 11 of their colleagues for this year’s Award of Merit. As the winner, Zack will receive a memento, a $2,500 award and recognition from the Executive Director.

Congratulations to all of our outstanding 2025 DSCC Award of Merit Nominees:

  • Shanna Berg, Customer Service Specialist
  • Deanna Deleshe, Core Regional Manager
  • Cheryl Golliher, Core Care Coordinator
  • Rebecca Grzeslo, Core Program Coordinator Assistant
  • Andrea Hoskinson, Assistant Director of Operations Finance, Accounting, and Procurement
  • Darlene Jones, Home Care Quality Improvement Specialist
  • Beth Niemerg, Core Care Coordinator
  • Haley Phelps, Interim Relief Program Manager
  • Tiffany Riddle, Core Enrollment Specialist
  • Rita Storck, HC Care Coordinator

See photos of the 2025 nominees in our 2025 Award of Merit luncheon photo album on Facebook.

DSCC is on Instagram!

November 10th, 2025

Graphic announcing, "We're on Instagram!" There is confetti and @uicdscc is in bright yellow.

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! 

Update on DSCC’s New Claims Processing System  

October 2nd, 2025

Healthcare billing statement with a calculator, stethoscope and pen

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. 

Seeking Teens and Young Adults for Our Youth Advisory Council

September 25th, 2025

A diverse group of four students, including a young woman in a wheelchair, gathered in a college library and enjoying discussion

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:

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!

Free Virtual Training Program on Caring for Children With Complex Medical Needs at Home

September 18th, 2025

the eHomeCare logo featuring a computer screen with a an illustration of a stethoscope and a heart and a house

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.

New Approval Process for Respite Nursing Services

August 12th, 2025

A nurse holds a laughing boy with cerebral palsy

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!