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.

Help our Family Advisory Council recommend changes that can benefit Home Care Program participants and their families.

The Division of Specialized Care for Children (DSCC) helps coordinate and monitor in-home nursing for families through the Home Care Program.

The Illinois Department of Healthcare and Family Services (HFS) determines the number of approved nursing hours after reviewing the individual’s medical reports and medical needs.

Our Family Advisory Council (FAC) now wants to help families better understand the process for how HFS assigns nursing allocations. The FAC also wants to help HFS understand the unique needs and circumstances of Home Care families when deciding nursing allocations.

FAC Advocacy Chair Whitney Woodring is putting together a Nursing Allocation Workgroup to gather feedback on these issues. Whitney’s daughter Willa has received Home Care services since she was a baby. (See Willa’s Family Story for more details.)

Whitney hopes to speak with families across Illinois to learn about their experiences with nursing allocations and the appeal process.

You can email Whitney directly with feedback at w.woodring25@gmail.com.

Whitney would like to hear all input, including positive experiences with the process.

Your feedback will help Whitney and the FAC make recommendations for changes that can benefit as many participants as possible.

To learn more about the FAC, visit our Family Advisory Council page. Be sure to also join the FAC’s next open forum meeting on Nov. 10.

Need more information about nursing services and allocations?

Our Nursing Services Tip sheet gives an overview of Medicaid’s nursing services to help families in the Home Care Program take care of their child’s medical needs:

• Nursing Services Tip Sheet in English
• Nursing Services Tip Sheet in Spanish

Our Home Care Appeal and Peer-to-Peer Review Tip Sheet explains how the review and determination of medical eligibility for Home Care services work:

• Appeal and Peer-to-Peer Review Tip Sheet in English
• Appeal and Peer-to-Peer Review Tip Sheet in Spanish

You can find these handouts and other helpful information for families on our Home Care Information Hub.

Don’t risk missing important paperwork and losing Medicaid coverage

Do you get health insurance through Medicaid?

Be sure your address is up-to-date so you don’t risk losing coverage.

The Illinois Department of Healthcare and Family Services (HFS) needs every Medicaid member to update their mailing address. This step can ensure you receive important paperwork about your benefits.

Medicaid pays for your health care, like visits to your doctor and your medicine. Updating your address can help you avoid surprises and get critical information about your insurance.

We urge all Division of Specialized Care for Children (DSCC) participant families who receive Medicaid to make sure their contact information is current.

You can update your address in several easy steps:

• Call the HFS hotline at (877) 805-5312 from 7:45 a.m. to 4:30 p.m. Monday through Friday
• Contact HFS via TTY at (877) 204-1012
• Fill out a quick online form at medicaid.illinois.gov.

To keep your Medicaid coverage, be sure to use an address where mail can always reach you.

For instructions in other languages, please visit HFS’ Address Update Messaging Toolkit webpage.

It’s been two years since HFS has asked Medicaid members to update their contact information. As the COVID-19 public health emergency continues, Medicaid members can stay insured without confirming all eligibility requirements.

Plans are underway to eventually end the public health emergency. An exact date is not yet known.

Once the date is set, HFS will mail important information about how to keep your Medicaid coverage.

Please update your address right away. The process is fast, easy and free.

We will share more details about the end of the public health emergency once they are available.

If you have questions or concerns, please contact your DSCC Care Coordinator. You can call our offices at (800) 322-3722.

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.