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.

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.

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

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. 

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.

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.

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.