Key dates to know and an overview of the impact on DSCC participants and families

We are starting to prepare for the end of the public health emergency due to the COVID-19 pandemic. We’ve put together important information about how it will affect our Division of Specialized Care for Children (DSCC) participants and their families.

When the public health emergency took effect in 2020, the federal government allowed continuous Medicaid coverage and flexibilities for individuals receiving services through a Medicaid waiver. The federal government has signaled that the public health emergency will end on May 11, 2023. Please note the federal Centers for Medicare and Medicaid has not yet confirmed this date in writing.

We want to keep our participants as up-to-date as possible and will let you know if this date changes. In the meantime, we want to explain what changes will occur once the public health emergency and continuous Medicaid enrollment end.

The following sections give an overview of:

• The end of continuous Medicaid coverage
• The changes for all DSCC participants and families
• The impact on those enrolled in the Home Care Program

End of Continuous Medicaid Coverage

When the public health emergency began in 2020, the federal government allowed for continuous Medicaid coverage. This flexibility meant no one would lose Medicaid coverage during this time. The federal government is now ending continuous Medicaid coverage on March 31, 2023.

Starting April 1, Illinois Medicaid must review eligibility for all Medicaid cases. This process is called redetermination. Redetermination is when Medicaid looks to see if you are still eligible. They look at your residency, monthly income and other criteria to decide if you still qualify.

Medicaid will send forms to some members as early as May 2023. They will not complete redetermination on all cases at the same time. They will make the redeterminations over several months. This means that your Medicaid redetermination could happen in May or later this year.

It is important to make sure Medicaid has your current address. You can report your address online at Medicaid.illinois.gov or call (877) 805-5312. We also have a news post with more details about how to update your address. Please watch your mail for letters from Medicaid.

Once you receive your redetermination notice, you will have about a month to respond. Medicaid may ask for more information about your income, residency, or other information. If Medicaid asks for more information and you do not respond, your Medicaid coverage ends. You can return the redetermination in several ways:

1. Online at ABE.illinois.gov using Manage My Case. Manage My Case is the quickest way to complete your redetermination.
2. By mail.
3. In person at a local Illinois Department of Human Services (DHS) Family Community Resource Center.
4. By phone.

If you are in a Medicaid managed care plan (MCO), please remember the MCO does not do the redetermination. Medicaid does redetermination reviews. If you do not qualify for Medicaid anymore, your coverage ends. If you are still eligible, you keep your Medicaid coverage.

Don’t risk losing your health insurance. Please update your address with Illinois Medicaid. It’s easy, fast and free:

• Call (877) 805-5312 from 7:45 a.m. to 4:30 p.m., Monday through Friday.
• Visit medicaid.illinois.gov.
• If you use a TTY, call (877) 204-1012.

Please contact your DSCC Care Coordinator if you have questions about Medicaid redetermination.

Changes for All DSCC Program Participants:

• In-Person Visits: The public health emergency has allowed flexibility for in-person visits. As the public health emergency ends, DSCC must resume all in-person visits by Nov. 11, 2023. Your DSCC Care Coordinator will work with you to schedule your next in-person/home visit.

• Verbal Signatures: The public health emergency also allowed your Care Coordinator to receive necessary signatures verbally. As the public health emergency ends, we can no longer accept verbal signatures beginning May 11, 2023.

Impact on DSCC Participants in the Home Care Program:

The COVID-19 public health emergency has allowed several flexibilities for those in the Home Care Program in two separate areas:

• Continuous Medicaid and program enrollment for those found ineligible for services beginning March 1, 2020
  
• Appendix K flexibilities (Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver.)

The following is important information about how the end of the public health emergency will affect Home Care Program participants.

End of Continued Medicaid and Program Enrollment for Those Found Ineligible for Services:

• There have been no reductions or loss of eligibility for Home Care participants since March 1, 2020. In 2022, the federal government separated the continuous Medicaid enrollment coverage provision from the public health emergency. As a result, continuous Medicaid coverage will end on March 31, 2023.
  
  Starting April 1, 2023, DSCC will work with the Illinois Department of Healthcare and Family Services (HFS) to determine eligibility. We will reassess all Home Care Program participants who received a notice of ineligibility for the program since March 1, 2020. If you or your child received a notice of ineligibility for services since then, your services will remain in place until we complete a reassessment. The reassessment will look at your updated and current medical documentation. This includes individuals who appealed and were still deemed ineligible for services. Based on the new reassessment, HFS will send you an updated notice. This notice will state whether you or your child are eligible for Home Care services. Your DSCC Care Coordinator will work with you to complete a reassessment before Sept. 30, 2023.

• If you or your child received a notice of reduced nursing hours since March 1, 2020, your Care Coordinator will complete the next reassessment of services at your regularly scheduled renewal time. Services will remain in place until this reassessment occurs. After this reassessment, HFS will send you a new notice based on updated and current medical documentation. The notice will list the new level of services.

More Information for Individuals in the Non-Waiver Program (Nursing and Personal Care Services):

• You will no longer receive Home Care Program nursing services if you or your child turned 21 and are not on the MFTD waiver but still receive nursing. Your nursing services will end on Sept. 30, 2023. Your Care Coordinator will work with you to ensure you, or your child is set with an alternate state waiver, such as the Division of Rehabilitation Services (DRS), if applicable. If you or your child will turn 21 on or after March 31, 2023, services will end on the date indicated on the current notice of ineligibility.
  
• For all non-waiver participants under age 21, you must continue to have Medicaid coverage to receive Home Care services. It is important that you submit the redetermination form from Medicaid to keep your coverage. If you fail to meet Medicaid eligibility or do not respond in time, HFS will cancel your Medicaid case. Your Home Care services will then also end. For more information on the Medicaid redetermination timeline, see the dates above.

Appendix K Flexibilities

Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver. Appendix K provisions took effect on March 1, 2020, to give flexibility to Home Care participants. Appendix K is tied to the public health emergency, which is determined by the federal government.

As we noted above, the federal government has indicated the public health emergency will end on May 11, 2023. Appendix K provisions would then continue for six months after the public health emergency ends. Therefore, Appendix K flexibilities will end on Nov. 11, 2023. However, DSCC worked with HFS to make two flexibilities permanent. Here are more details on what will change and what will remain in place:

• Licensed (RN or LPN) parent/LRA paid caregivers: Parents/legally responsible adults (LRAs), including foster parents, can continue to provide skilled nursing services to their child if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. DSCC sent a separate notice on this provision remaining permanent, which includes details on guidelines. (You can also read our news post on Home Care Program Changes Give Families More Flexibility and Support.)
  
• Overtime: Nursing agencies will permanently receive payment for providing overtime hours to Home Care participants. DSCC sent a separate notice on this provision remaining permanent, which includes details on guidelines. (You ou can also read our news post on Home Care Program Changes Give Families More Flexibility and Support.)
  
• Additional COVID-19 respite allotment: During the public health emergency, HFS approved an additional 336 hours of respite to use before the regular respite allotment. This additional respite is for all Home Care MFTD waiver participants. Starting Nov. 11, 2023, this additional COVID respite will expire. All respite used after Nov. 11, 2023, will come from the standard respite allotment.
  
• Personal Protective Equipment (PPE): During the public health emergency, nursing agencies were reimbursed for PPE when actively staffing nurses in the home. The PPE is for the nurses to use while caring for participants. This reimbursement of PPE supplies to the nursing agencies will end on Nov. 11, 2023.
  
• Nursing Supervisory Visits: Nursing agencies resumed in-person supervisory visits in November 2020. Effective May 11, 2023, there will be no exceptions allowed to replace in-person supervisory visits.

Please contact your DSCC Care Coordinator at (800) 322-3722 if you have questions or are unsure how this information may impact your family.

We are thankful for your partnership throughout the pandemic and public health emergency. Our team will continue to help support your family and connect you with the right services and resources.

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.

A new licensure process for nursing agencies will help provide more options for children and adults in need of in-home nursing care

The nationwide nursing shortage has affected many Illinois families in need of in-home shift nursing care for their children with complex medical needs.

There is a constant demand for more in-home nursing care options in all parts of the state, both rural and urban.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) has partnered with the Illinois Department of Public Health (IDPH) to help meet this need and give families more nursing care options.

DSCC worked with IDPH to change how our enrolled nursing agencies are licensed to serve Illinois counties. Nursing agencies can now be licensed to serve all of Illinois instead of only individual counties.

This change should make it easier for nursing agencies to serve more parts of the state.

Before this change, nursing agencies could only operate within their approved service county area. Nursing agencies had to request approval for each county they wanted to serve.

This process made it difficult for nursing agencies to expand coverage to areas in need. Our participants who receive in-home shift nursing through the Home Care Program could only receive services from nursing agencies licensed for their specific county.

Now all nursing agencies who are licensed and enrolled with DSCC in good standing may serve all Home Care participants in any part of the state.

This broader statewide approach to nursing agency licenses will offer more available nursing options to our participant families.

Please note that each nursing agency must decide if it wants to expand its service area to other parts of the state. This decision is based on nursing staff availability.

We are thankful for IDPH’s partnership to help meet this important need for our participants and their families!

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.

UPDATE: Please note this support group is now open to all families of children enrolled with the Division of Specialized Care for Children. See the latest support group news for more details.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is partnering with UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND) to offer a support group for families enrolled in the Home Care Program.

The Home Care Program helps children and adults who require in-home nursing care. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

This support group will provide an online space for parents to access educational workshops and swap concerns, resources and strategies.

There is no cost for families to participate.

The group will meet on the third Wednesday of the month from November through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with Home Care staff

IL LEND would also like to hear families’ ideas for future support groups and workshop topics. You can share your feedback on this brief online form.

The support group schedule is for the following dates from 5:30 to 6:30 p.m.:

• Nov. 17
• Jan. 19
• Feb. 16
• March 16
• April 20

Here are details for the first session:

• WHAT: Virtual support group/workshop series for parents/caregivers of children and adults enrolled in the Home Care Program.
• WHEN: Nov. 17 from 5:30 to 6:30 p.m.
• TOPIC: Navigating the COVID-19 Pandemic (Note, the discussion portion of the support group will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• REGISTER: Please sign up online in advance. After registering, you will receive a confirmation email containing information about joining the workshop discussion via Zoom.

A brief survey for Home Care Program families will help us improve service and support

Attention all families in the Home Care Program! We want to know how well your family’s nursing agency is meeting your needs.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) team has put together a short, 10-question survey for families to complete.

We will not share your individual survey responses with anyone.

There is no requirement to share your name or your child’s/participant’s name. Entering this information is completely optional.

We will group your survey responses with those from other families to better understand how rate increases are affecting nurses working in the home.

Our ultimate goal is to improve the services and support available for DSCC participants with complex medical needs.

Please note this survey is only for families enrolled in the Home Care Program who receive in-home shift nursing services.

You can fill out the survey at https://uic.ca1.qualtrics.com/jfe/form/SV_85Pqs6nSdnHb7ds.

The survey is available in both English and Spanish.

The deadline to complete the survey is Oct. 19.

We appreciate your feedback and partnership!

Illinois awaits approval to use FMAP funds for improving care for our Home Care Program participants

Illinois has developed a plan to use increased federal funding to improve support and services for children and youth with complex medical needs.

This plan incorporates valuable feedback from our participants, stakeholders and staff members at the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The extra funds are part of the American Rescue Plan Act of 2021. The act gives Illinois a temporary 10 percent increase in federal funding for home and community-based services (HCBS). This 10 percent increase is called the Federal Medical Assistance Percentage or FMAP.

Illinois must use the FMAP funds to enhance, expand or strengthen HCBS.

HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide extra funds to help support children and youth in the Home Care Program and their caregivers. FMAP improvements will also affect individuals who receive in-home, shift-based nursing as a non-waiver benefit.

In late May, DSCC asked our participant families, staff and community partners for input on how to use the FMAP funds. We also sought feedback on DSCC’s ideas for improving HCBS for Home Care participants.

We shared the input we received with the Illinois Department of Healthcare and Family Services (HFS). We then worked with HFS to develop Illinois’ proposal for using the FMAP funds.

Ideas included in the proposal are:

1. Expand consumer direction (the ability for consumers to make choices about the services they receive) to allow unlicensed family caregivers to be paid caregivers. DSCC would then work to develop health and safety monitoring, assist with training and more. This change could provide caregiver relief to a large number of Home Care families.
   
2. Develop a nursing portal where open shifts could be posted by nursing agencies and families. This portal would be visible to home nurses and families. The intent is to try to improve nursing coverage for open shifts across the state.
   
3. Improve training and access to training to help improve the quality of nursing care in the home. This initiative would include developing training that builds on and complements existing training for caregivers in the home.
   
4. Increase the in-home respite nursing rates to match the rates from the 2019 nursing rate increase.
   
5. Increase the child-specific training rates to match the rates from the 2019 nursing rate increase.

HFS submitted Illinois’ proposal to the federal Centers for Medicare and Medicaid Services in July. We are now awaiting its approval and planning for the necessary next steps.

It is important to note that though the FMAP funding increase is temporary, we hope to make many of these changes permanent. We are discussing how to handle any relevant long-term costs with HFS.

We are excited about this opportunity to improve care for our Home Care Program participants.

Thank you to everyone who took the time to share their ideas and feedback with us.

We will continue to share updates on the status of Illinois’ proposal as they become available.

UPDATED: In-home nurse agency supervisory visits are still optional for most Home Care Program families

We have an important clarification to share about the status of home nursing agency supervisory visits.

A previous version of this post stated that home nurse agency supervisory visits must now resume in-person without exceptions for all Home Care Program participants. That information is no longer accurate.

We have received clarification from the Illinois Department of Public Health (IDPH). The department’s June 24 notice about required in-person supervisory visits only applies to home health aides (CNAs) providing care in the home. It does not apply to all nurses working in the home.

At this time, in-person supervisory visits are only required when:

1. A CNA is providing care in the home.
2. The parent/guardian is a licensed nurse and providing care as a paid caregiver in the home.

If your home nursing care does not fall in these categories, in-person supervisory visits are not required and remain optional. (Please note that DSCC still encourages nursing agencies to perform in-home supervisory visits when possible to ensure the health and safety of our participants.)

We apologize for the confusion!

The emergency amendments that suspended in-person supervisory visits during the pandemic are still in place.

If you have questions or additional concerns about the status of in-home supervisory visits, please contact your DSCC Care Coordinator.

Our DSCC Team will continue to prioritize the health of your child and family and work with our state partners to provide guidance and support.

Once again, we regret any confusion and are happy to help answer any questions and address your concerns.

Thank you for your understanding.