We are working with our state and provider partners to try to ensure there is no impact on our participants’ care.

Late last week, we learned of a cyberattack affecting Change Healthcare.

We want to share how this event may impact our participant families. We also want to explain the steps that are in place to try to ensure there is no impact on your child’s care.  

Change Healthcare/Optum is the database that the Illinois Department of Healthcare and Family Services (HFS) uses to manage pharmacy claims. Please see the following communication from HFS at https://hfs.illinois.gov/medicalproviders/notices/notice.prn240223b.html.

In addition to the impact on the pharmacy system, this cyberattack also affects some billing processes. Home nursing agencies use Change Healthcare’s system to electronically submit their bills for payment. 

We have sent communication to the home nursing agencies who use electronic bills and put an alternative method of bill submission into place. This should not create any disruption in the nursing agencies’ ability to provide services in the home.

Lastly, our Division of Specialized Care for Children (DSCC) team is here to support your family with any issues you may experience. 

If you have any concerns or need assistance, please reach out to your assigned DSCC Care Coordinator. We are happy to help you. 

An overview of key changes affecting all Division of Specialized Care for Children participants now that the public health emergency is over

The public health emergency due to the COVID-19 pandemic ended on May 11, 2023.

This ending brings a variety of changes for our Division of Specialized Care for Children (DSCC) participant families. These changes include a return to in-person visits from DSCC Care Coordinators, an end to verbal signatures and more.

The following sections give an overview of key points and important dates to remember:

• Reminders for All DSCC Program Participants
• Reminders for Home Care Program Participants
• Important Medicaid/Insurance Updates for All DSCC Participants in Medicaid
• Contact Reminders for All DSCC Program Participants

Reminders for All DSCC Program Participants

Return to In-Person Visits

Meeting in person with our participants and families is an important part of care coordination. The public health emergency allowed face-to-face visits to occur virtually. Now that the public health emergency has ended, we must return to face-to-face meetings with our participants. 

Your DSCC Care Coordinator will work with you in advance to schedule your next in-person/home visit.  We understand that in-person visits with your Care Coordinator may be a change for you and your family. We paused these visits for several years during the public health emergency (though many families continued to meet with their Care Coordinator during the pandemic). 

Seeing you in person helps us get to know you and your family better. It can also help improve your connection with your DSCC Care Coordinator. Our partnership with Medicaid and Medicaid managed care plans also requires us to meet with you in person. If you have any concerns about in-person visits, please talk to your Care Coordinator. We will work with you to see how to best accommodate your preferences.

Verbal Signatures

The public health emergency allowed your Care Coordinator to receive necessary signatures verbally. As of May 11, 2023, it is a federal rule that DSCC can no longer accept verbal signatures.

• Electronic signature options (such as through Adobe) remain an option for families when signing DSCC documents.

Reminders for Home Care Program Participants

End of Continued Medicaid and Program Enrollment for Those Found Ineligibile for Services

Starting April 1, 2023, DSCC began working with the Illinois Department of Healthcare and Family Services (HFS) to reassess all Home Care Program participants who received a notice of ineligibility for the program since March 1, 2020. Now that the public health emergency has ended, HFS’ notices accurately list the approved level of services for you or your child.

• If you or your child received a notice of ineligibility for services since March 1, 2020, your services will remain in place until HFS completes a reassessment. The reassessment looks at your updated and current medical documentation and will occur 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.

Reminders for Individuals in the Non-Waiver Program (Nursing and Personal Care Services)

Now that the public health emergency has ended, all individuals who turn 21 and are not on the Home and Community-Based Services Waiver for Those Who Are Medically Fragile Technology Dependent (MFTD), will not be eligible for services. If you or your child were on non-waiver services and turned 21 between the dates of March 1, 2020, and March 31, 2023, 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 Rehabilitative Services (DRS), if applicable.

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.

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 can be no exceptions to replace in-person supervisory visits.

Important Medicaid/Insurance Updates for All DSCC Participants in Medicaid

These next sections explain important Medicaid updates now that the public health emergency and continuous Medicaid coverage period has ended. The end of the public health emergency may also affect your Medicaid coverage or your private health insurance coverage.

No More Copays or Premiums for Medicaid

Most Medicaid programs no longer have premiums or copays. All Kids Assist, Aid to the Aged Blind and Disabled (AABD) and Adult Medicaid do not have monthly premiums or copays for services. All Kids Premium 1, Premium 2 and Share programs are all called All Kids Assist now.

Medical Redetermination for Medicaid

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 sent 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 now or later, even next 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.

Telehealth Coverage

Telehealth coverage for Medicaid (and other insurances) is a permanent change and will continue after the public health emergency to give Medicaid time to review for any future changes. You can review the HFS Provider Notice issued May 9, 2023, on Telehealth to learn more.

An Illinois law signed in 2021 requires insurance to cover telehealth through 2027. This law does not require that practitioners or providers offer telehealth services. Therefore, your providers may not offer telehealth care. The law only says that insurance must pay providers for telehealth care if they provide it.

Pharmacy Billing and Prior Approval Requirements

Pharmacy billing and prior approval requirements for Medicaid will resume. There were many flexibilities that allowed Medicaid members to get medications. These include overriding the refill too soon and waiving requirements for the preferred drug list, quantity and brand limits. If you go to the pharmacy and they tell you that you can’t get your medications, ask your doctor to submit a prior approval to Medicaid. You can review the HFS Provider Notice issued May 3, 2023, on Pharmacy Billing to learn more. Contact your DSCC Care Coordinator for more help.

DME and Therapy Prior Approval Requirements

DME and therapy prior approval requirements for Medicaid will resume. There are some services that Medicaid did not require a prior approval for during the public health emergency. These services include therapy, home health and some durable medical equipment (DME). It is important for your providers to get a prior approval so that Medicaid reviews medical eligibility for the services. You can review the HFS Provider Notice issued April 4, 2023, on Prior Approval Requirements for more details. Contact your DSCC Care Coordinator for more help.

COVID-19 Tests, Treatment, and Vaccines

Uninsured individuals will no longer get access to special COVID-19 Medicaid eligibility which included testing, services, treatment, and vaccine administration during the public health emergency. You can view the HFS Provider Notice issued May 9, 2023,  on Uninsured Population Special COVID-19 Coverage. Medicaid members who do have eligibility will continue to be able to access treatment, testing and vaccines.

Those with private insurance should also be able to continue to access treatment and vaccines as outlined by their plan.

Insurance plans will no longer cover over-the-counter tests for COVID-19  for free. Generally, a doctor will need to order the test and provide them in an office or similar facility. This may vary from plan to plan. You should call your insurance plan if you have questions. There may also be community organizations or public health departments still distributing COVID-19 tests and related services, such as vaccines, for free.

Extension of COBRA

During the public health emergency,  there was an extension of election and notice deadlines for someone to take COBRA after losing or leaving a job. That will expire 60 days after May 11, 2023.

Temporary Special Enrollment Period

For individuals who no longer qualify for Medicaid after they go through redetermination, there is a special open enrollment period through the federal health insurance marketplace to purchase private insurance. It will extend from March 31, 2023, to July 31, 2024. This is only for people with a special qualifying event, such as losing coverage. Otherwise, the regular open enrollment period will be in November and December for individuals who need to enroll in private insurance through the marketplace. The Illinois website is GetCovered.illinois.gov and the federal website is HealthCare.gov.

Questions? Contact Us!

As a DSCC participant family, you can contact us with any questions or support your family needs.

Please note the best way to reach your care coordination team or any DSCC office is through our toll-free number of (800) 322-3722.

You can use this number to dial your Care Coordinator’s direct extension or to have our Customer Service Representatives connect you with the right person/team.

We have updated our phone system and ask everyone to use the (800) 322-3722 number as the simplest and fastest way to reach us.

Our office hours are 8 a.m. to 4:30 p.m. Please talk to your Care Coordinator if you have a need to speak outside of business hours.

You may also reach us through our general dscc@uic.edu inbox or use our Contact Us or Request a Callback forms on our website.

Please talk with your Care Coordinator if you have more questions or need to update your communication preferences.

We are thankful for your partnership throughout the changes related to the end of 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.

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.