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.

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!

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.