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.

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.

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.