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 Project 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.

Families have through Sept. 28, 2024, to share input on waiver amendments allowing CNAs to become paid family caregivers and nursing rate increases.

Families have an opportunity to share feedback on several significant updates to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver).

The Illinois Department of Healthcare and Family Services (HFS) is the Medicaid agency responsible for the MFTD waiver. Many families in the Home Care Program have children who receive services through this waiver.

HFS is currently seeking approval from the federal Centers for Medicare and Medicaid Services (CMS) for waiver amendments that will:

• Allow parents who are certified nursing assistants (CNAs) to be paid family caregivers
• Increase rates for in-home nurses and CNA services

Read below for more details about these amendments and how to share your input.

CNAs as Paid Family Caregivers

Plans are underway to allow parents/legally responsible adults (LRAs) to become paid caregivers if they are a CNA and employed through 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 services, regardless of the child’s age. (Read more about our efforts to make paid licensed family caregivers a permanent benefit.)

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

This update would give more parents/LRAs the opportunity to earn payment for the caregiving they provide their children at home.

This change requires an amendment to the MFTD waiver as well as the creation of a new state plan amendment.

Nursing Rate Increase

HFS is also proposing a 7 percent rate increase for in-home nurses and CNA services to take effect on Jan. 1, 2025.

This rate increase would affect:

• RN, LPN and CNA care
• In-home and facility-based respite care
• Nurse training rates

The proposed rates are as follows:

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

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

Transitional Care Services provided outside the home (not an MFTD waiver service) is expected to have a rate increase from $950 to $1,300 a day. This increase would also take effect on Jan. 1, 2025.

Other Key Updates in the Amendment Include:

• Adds adaptive equipment and assistive technology as new services.
• Makes pest control a post-approval process. This change means families will not need to receive prior approval for pest control services.
• Makes the Division of Specialized Care for Children (DSCC) the entity responsible for the prior approval for home accessibility modifications, vehicle modifications, medical equipment operating expenses, adaptive equipment, placement maintenance counseling and assistive technology.
• Removes the requirement of two bids if the cost exceeds $2,000 for waiver services. This change is necessary to help increase access to services.

Share Your Feedback

The public comment period for these proposed waiver amendments is now open.

To review the full list of proposed waiver updates, you can:

• Read the public comment notice on HFS’s website.

• Review a hard copy at HFS’ offices at:
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

The deadline to provide feedback is Sept 28, 2024.

You can share your feedback in two ways:

• Via email to HFS.HCBSWaiver@illinois.gov
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

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

HFS will send your comments to the federal CMS as part of the waiver approval process.

If you have questions, please contact HFS’s Waiver Operations Management Unit at (217) 524-4148 or (844) 528-8444.

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

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

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

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

This rate increase affects:

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

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

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

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

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

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

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

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

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

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

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

Free virtual training sessions in English and Spanish for Division of Specialized Care for Children participants, their families and all who are interested

Navigating the health insurance maze can be frustrating.

We’ve heard our participant families’ feedback and want to help improve the process.

Please join the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) for our new education series on important health insurance topics.

These free, family-focused sessions will help you better understand your coverage and benefits.

Sessions are virtual and open to DSCC participants, their families/caregivers and anyone interested in these topics.

The DSCC Health Insurance Education Series is the result of DSCC families’ questions and suggestions from our Family Advisory Council.

Our Benefits Management and Research (BMR) team will explain a different topic and answer your questions each month. They will present each session in English and in Spanish via Zoom.

Save the date for each session:

• Understanding Your Insurance
  
  English: March 7, 6 p.m.
  Spanish: March 8, 6 p.m.
  
  This training will help you understand your health insurance. It will go over the types of insurance plans and some important words to know. You will also learn what to do if you have many insurance plans and how to find a doctor.
  
  Sign up for Understanding Your Insurance in English
  Sign up for Understanding Your Insurance in Spanish

• Medicaid Eligibility and Coverage
  
  English: April 11, 6 p.m.
  Spanish: April 12, 6 p.m.
  
  This training will help you learn about Illinois Medicaid programs. It will discuss who can have Medicaid and the programs for children and adults. You will learn what Medicaid covers and how to keep Medicaid coverage through the yearly redetermination process.
  
  Sign up for Medicaid Eligibility and Coverage in English
  Sign up for Medicaid Eligibility and Coverage in Spanish

• Insurance Appeals
  
  English: May 9, 6 p.m.
  Spanish: May 11, 6 p.m.
  
  This training will cover information on health insurance appeals. You will learn what to do if your insurance doesn’t approve a service. You will also learn more about the appeal process and how to write an appeal letter. Examples will be available.
  
  Sign up for Insurance Appeals in English
  Sign up for Insurance Appeals in Spanish

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

Each session will be recorded. You can access the recordings and related materials on our Family Education Webinars page.

There is no cost for families to participate.

If you have questions before or after a session, please email dscc@uic.edu or fill out our Contact Us form.

We hope you’ll join us!

Paid licensed caregivers and nurse overtime are now permanent options for Home Care families

We have exciting news about long-term changes to the Home Care Program. We have listened to our participant families and made two pandemic-related benefits permanent. These changes can provide continued flexibility and support beyond the public health emergency.

When the COVID-19 pandemic began in March 2020, UIC’s Division of Specialized Care for Children (DSCC) partnered with the Illinois Department of Healthcare and Family Services (HFS) to address our Home Care families’ needs. Together, we set provisions included in Appendix K. Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver.

We continued to partner with HFS to make two provisions permanent for Home Care participants. As a result, nurses can continue to provide overtime. Licensed parents/legally responsible adults (LRAs) can also remain paid nurse caregivers for their children enrolled in Home Care.

Below are more information and guidelines on these new permanent changes.

Licensed (RN or LPN) Parent/LRA Paid Caregivers

Parents or LRAs, including foster parents, can provide skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license.

This approval includes participants enrolled in medically fragile, technology-dependent (MFTD) waiver services and non-waiver services. This approval is for all children approved for Home Care services, regardless of the child’s age.

Guidelines include:

• The licensed parent/LRA must be a nurse employee of a DSCC-approved nursing agency. The nursing agency sets the number of hours the parent can work each week.
• Services may begin on the licensed parent/LRA’s hire date.
• The licensed parent/LRA must meet all nursing agency rules for provider qualifications and training.
• The licensed parent/LRA can work overtime hours. Overtime is anything over 40 hours a week.
• The licensed parent/LRA must hold an active RN or LPN license.
• Licensed parents/LRAs may not provide respite services under the waiver.
• Licensed parents/LRAs cannot receive reimbursement for nurse training.
• The total nursing hours may not exceed the approved resource allocation.

Overtime

Nursing agencies will permanently receive payment for overtime hours to Home Care participants. Overtime hours benefit the participant and family. They also allow nurse caregivers to provide more nursing coverage to participants. The possibility of overtime also incentivizes the nurse caregiver to provide more coverage. Overtime allows nursing agencies to cover more authorized hours while stretching their staffing over fewer nurses. This is especially helpful to families during a time of increased demand for nurses.

Guidelines include:

• Under the Fair Labor Standards Act, overtime is anything over 40 hours a week.
• The Nurse Practice Act prohibits working more than 16 hours in a 24-hour period. An eight-hour break between shifts is also mandatory.
• Overtime is defined as time-and-a-half.
• Overtime reimbursement comes from the approved resource allocation. The amount billed cannot exceed the HFS-approved resource allocation.
• Those on the MFTD waiver cannot use overtime when using respite hours.
• Parents/LRAs who are nurse paid caregivers can work overtime. The parent/LRA is an employee of the nursing agency. The nursing agency determines the number of hours the parent can work each week. The number of hours cannot exceed the approved resource allocation.
• Nurses can only be eligible for overtime when Medicaid is the payer. When private insurance is the payer, nurses cannot receive overtime pay.

Please contact your DSCC Care Coordinator with any questions or concerns.

We hope these permanent changes will continue to benefit your family.

DSCC partners with state and federal agencies to ensure licensed caregivers can be paid nurses for their children beyond the public health emergency

The COVID-19 public health emergency has given families more flexibility to help care for their children with complex medical needs.

One helpful way is allowing parents and legally responsible adults (LRAs) who are licensed nurses to be paid caregivers.

The Division of Specialized Care for Children (DSCC) is working with our state and federal partners to make this a permanent option through the Medicaid Home and Community-Based Services Waiver for Medically Fragile, Technology Dependent (MFTD) Children.

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

HFS must renew Illinois’ MFTD waiver every five years. The current waiver will expire on Aug. 31.

DSCC and HFS partnered to collect family input and propose several changes as part of this year’s renewal process. Our proposal included a request for nursing by licensed LRAs to be a permanent MFTD waiver service.

We understand this option is a much-needed benefit for our participant families.

The federal Centers for Medicare and Medicaid Services (CMS) reviewed our proposed changes as part of the waiver approval process.

CMS is now asking for more time to review our request for paid nursing by licensed LRAs. Therefore, nursing by licensed LRAs is currently not part of the approved waiver that will take effect on Sept. 1.

“CMS is aware of the strong advocacy and support of this service from waiver customers, families, UIC (the University of Illinois Chicago), DSCC, and HFS. It is their intention to support the State in this endeavor; however, their review will not be completed by the waiver expiration date,” according to an HFS notice to MFTD waiver families.

You can read the full notice about licensed LRAs and the waiver renewal on the HFS website.

In the meantime, nursing by licensed LRAs remains part of Appendix K. (Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver.)

Licensed LRA nursing will therefore continue throughout the public health emergency and six months after it ends. (The public health emergency is currently set to end in October, but this date will likely be pushed back once more.) This option is available for all Home Care participants, including those who do not receive MFTD waiver benefits.

This timeframe will give CMS more time to review and work with DSCC and HFS to approve licensed LRA nursing as a permanent waiver service.

Families can see the approved waiver and review the changes taking effect on Sept. 1.

We will continue partnering with HFS and CMS to help meet our participants’ needs and resolve their concerns. We look forward to more progress in the coming months.

Please note this update about licensed parent caregivers is separate from DSCC and HFS’s other work to expand paid caregiving options for the Home Care Program as part of Illinois’ plans for an increased federal match (FMAP) from the American Rescue Plan Act (ARPA).

We remain committed to improving support for caregivers of children with medical complexity. We will share updates as available on this additional work.

The deadline to share feedback is June 30.

Families have an opportunity to share feedback on proposed updates to the Medicaid Home and Community-Based Services Waiver for Medically Fragile, Technology Dependent (MFTD) Children.

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

HFS must renew Illinois’ MFTD waiver every five years. HFS and the Division of Specialized Care for Children (DSCC) have partnered to make several changes as part of this year’s renewal process.

To review the full list of waiver updates, you can:

• See page 2 of the electronic copy of the proposed renewal application.
  
• Review a hard copy at HFS’ offices at:
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

HFS now seeks public input on these changes. (You can read the public comment notice on the HFS website.)

The deadline to provide feedback is June 30.

You can share your feedback in two ways:

• Via email to HFS.HCBSWaiver@illinois.gov
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

HFS will send your comments to the federal Centers for Medicare and Medicaid Services as part of the waiver approval process.

If you have questions, please contact HFS’s Waiver Operations Management Unit at (217) 524-4148 or (844) 528-8444.

Families have until Oct. 2 to provide feedback on several updates to the Home and Community-Based Services Waiver for children who are medically fragile and technology-dependent

The state invites families to provide feedback on several proposed amendments to the Home and Community-Based Services waiver for children who are medically fragile and technology-dependent (MFTD).

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 the following proposed amendments:

• Increase the Placement Maintenance Counseling rate from $50 to $86.28 to be more consistent with the Illinois Department of Human Services’ rates for counseling services.
  
• Update the cost projections for In-Home Shift Nursing and Certified Nursing Assistant for the waiver’s fifth year to account for recent rate increases and individuals over age 21 continuing to receive waiver services.
  
• Add Electrical Assessments to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Add Generators to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Lower the required number of bids for vehicle modifications from three to two.

HFS now invites the public to comment on these proposed amendments. (You can read the public comment notice on the HFS website.)

To review the full waiver amendments, you can:

• Download and read and/or print a hard copy of the amendments from the HFS website.
• Call (217) 524-4148 to receive a hard copy.
• Review copies at Healthcare and Family Services offices at :
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

The deadline to provide feedback is Oct. 2.

You can submit feedback in two ways:

• Via email at HFS.HCBSWaiver@illinois.gov
  
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

HFS and the University of Illinois Chicago’s 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.