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 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

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.

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 communicates 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

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

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!

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.

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. 

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!

The new system offers faster, more efficient claims processing

Our new, centralized claims and provider management system for the Division of Specialized Care for Children (DSCC) is now live!

This upgrade is part of our continued commitment to improve service delivery and strengthen our partnerships with providers by offering faster, more efficient claims processing.

The new platform offers a new and improved Provider Portal. Please note that the new Provider Portal is not yet available for our Core Program providers.

Here is what each group of providers needs to know:

Core Program Providers

As we launch our new claims processing system, please be aware that our previous Provider Portal is no longer available.

We are currently developing a new and improved Provider Portal for our Core Program-enrolled providers. We expect to launch the new portal in the coming months. For more details, please visit our Provider Portal page.

Home Care Nursing Agencies

Our new claims processing system combines NurseNet and the new Provider Portal into a single, streamlined solution to make managing claims easier and more efficient.

If your agency has not yet completed the Provider Portal Access form, please have a designated representative do so as soon as possible.

Please include all users your agency would like to access NurseNet, the Provider Portal or both. Once you sign the form electronically, it will automatically go to DSCC for review.

For more details about how to register and log in, please visit our Provider Portal page. You will also be able to find resources for using the new Provider Portal, including a tip sheet and how-to videos.

HFS has received the necessary federal approval for the Jan. 1, 2025, rate increase to take effect.

We have an important update on the rate increase for in-home nurses originally set to take effect on Jan. 1, 2025.

The Illinois Department of Healthcare and Family Services (HFS) has received the necessary federal approvals for the rate increase to take effect.

You will see the updated rates reflected on your next Prior Authorization for In-Home Shift Nursing letter (also known as the 2352).

The rate increase affects:

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

The increased rates are:

• RN, $57.78 per hour
• LPN, $48.15 per hour
• CNA, $32.10 per hour

You can find the updated rate table on our website’s Home Care Rate Table page.

The Division of Specialized Care for Children (DSCC) will begin paying nursing agencies the newly approved rate when our new CarePay claims software system goes live. We currently expect to launch CarePay in mid-May.

We are communicating with our enrolled home nursing agencies about this update as well.

After we transition to CarePay, DSCC will work with home nursing agencies to adjust payments for nursing services dating back to Jan. 1. 

If you have any questions, please reach out to your DSCC Care Coordinator. We are here to help!

We developed a tip sheet to help guide parents and caregivers through the steps to become a CNA.

We continue to wait for approval to allow parents/legally responsible adults (LRAs) to become paid caregivers if they are a certified nursing assistant (CNA) and employed by a nursing agency.

We understand that our participant families are eager for this change to take effect. Allowing parents and caregivers who are CNAs to become paid caregivers is an important step in strengthening support for families of individuals who need in-home shift nursing.

To help families prepare as we await approval, we’ve put together a Certified Nursing Assistant Resources Tip Sheet.

This tip sheet aims to guide parents and caregivers through the steps to become a CNA. It links to several websites for your convenience and provides general guidelines.

• CNA Resources Tip Sheet in English
• CNA Resources Tip Sheet in Spanish

You can also find the CNA Resources Tip Sheet on our Home Care Nursing Information for Families page.

Our Family Advisory Council reviewed this tip sheet to make sure it’s as helpful for families as possible.

Please remember that currently, parents/LRAs can only be paid for providing skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. This rule applies to parents/LRAs of all children approved for Home Care Program services, regardless of the child’s age.

The plan to allow CNAs as paid family caregivers requires an amendment to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver). It also requires the creation of a new state plan amendment. Both approvals must be in place to allow for this change.

There is currently no set timeline for the state plan amendment and the MFTD waiver amendment to be approved.

Once approved, we will notify you as quickly as possible.

If you have any questions, please contact your DSCC Care Coordinator at (800) 322-3722.

Families have until Jan. 30, 2025, to share their input on a state plan amendment allowing CNAs to become paid family caregivers.

Families can now share their feedback to allow more parents/legally responsible adults (LRAs) to become paid caregivers for their children at home.

The public comment period is currently open for a state plan amendment allowing parents/LRAs to become paid caregivers if they are a certified nursing assistant (CNA) and employed by a nursing agency.

Currently, parents/LRAs are paid for providing skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. This rule applies to parents/LRAs of all children approved for Home Care Program services, regardless of the child’s age.

Allowing parents and caregivers who are CNAs to become paid caregivers is an important step in strengthening support for families of individuals who need in-home shift nursing.

This change requires an amendment to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver). It also requires the creation of a new state plan amendment. Both approvals must be in place to allow for this change.

The public comment period for the new state plan amendment is now open until Jan. 30. You can read the public comment notice for the state plan amendment on the Illinois Department of Healthcare and Family Services (HFS) website.

Here is how you can review the amendment and share your feedback.

Review the Amendment

• Visit the HFS website to download and/or print a copy of the proposed state plan amendment.
• Email HFS.BPPC@illinois.gov to request a digital copy of the proposed state plan amendment.
  
• Review a hard copy of the proposed state plan amendment at HFS’ offices at:
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
  • 401 S. Clinton
    Chicago, IL 60607
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
  • 401 S. Clinton
    Chicago, IL 60607

Share Your Feedback

HFS is accepting public input on the proposed state plan amendment through Jan. 30, 2025.

You can share your feedback in two ways:

• Email your input to HFS.BPPC@illinois.gov.
• Mail your written input to the Illinois Department of Healthcare and Family Services, Attention: Bureau of Program and Policy Coordination, 201 South Grand Ave. E., 2nd floor, Springfield, IL 62763

This public comment process is one of the best ways you can make your voice heard.

Next Steps

In addition to the new state plan amendment, we have worked closely with HFS to incorporate this new rule into the MFTD waiver. This waiver amendment is currently under federal review for approval.

There is currently no set timeline for the state plan amendment and the MFTD waiver amendment to be approved.

Once approved, we will notify our Division of Specialized Care for Children (DSCC) participant families as quickly as possible.

If you have any questions, please contact your DSCC Care Coordinator at (800) 322-3722. 

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 MCH Bridges podcast shares the story of how DSCC partnered with parent advocates and state agencies to allow generators to be an MFTD waiver benefit

In August 2020, a powerful windstorm called a derecho struck Illinois.

The storm produced about 15 tornadoes in the Chicagoland area and caused widespread power outages. Many people were without power for multiple days.

After the storm, parent advocate Susan Agrawal compiled feedback from Home Care Program families about how the power loss affected their children and loved ones with complex medical needs. She then shared this feedback with the Division of Specialized Care for Children (DSCC).

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS). The Home Care Program serves individuals who need in-home nursing to safely live at home.

Many of these individuals are enrolled in the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent (MFTD waiver). These individuals often have tracheostomies, ventilators, gastrostomy tubes and other medical technology that depends on electricity.

The feedback Agrawal shared showed that many Home Care families wanted the ability to use MFTD waiver funds to pay for power generators for their homes.

DSCC took this feedback, did research and worked with HFS to pursue an amendment to the MFTD waiver to allow waiver funds to cover the cost of generators.

A recent episode of the MCH Bridges podcast tells the story of how this new waiver benefit became available for families. The podcast is from the Association of Maternal and Child Health Programs (AMCHP).

Dr. Molly Hofmann, DSCC’s Director of Care Coordination, Systems Development and Education, co-hosted the episode called “Generating Policy Solutions to Protect Children with Complex Health Care Needs During Emergencies.”

The episode highlights the importance of preparedness, especially in the face of natural disasters or power outages that can severely affect the care of children who are medically fragile and technology dependent.

It features the following DSCC team members and partners:

• Stephanie Leach, DSCC’s Associate Director of Systems of Care
• Courtney Kerfoot, DSCC’s Integrated Program Support Specialist
• Susan Agrawal, parent advocate, Director of the Family-to-Family Health Information Center at The Arc of Illinois and the founder and leader of MFTD Waiver Families in Illinois
• Pam Winsel of the Illinois Department of Healthcare and Family Services

Thank you to AMCHP for highlighting our efforts and partnerships to ensure children with complex medical needs have the life-saving technology they need in emergency situations!

You can learn more about how the MFTD waiver pays for home generators and other important benefits for Home Care families on our Waiver Services for Home Care Families page.