Illinois families gained knowledge and formed priceless relationships during the 2023 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

The journey to the 2023 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing was a mixture of excitement, nerves and some fear for Kelly Lane and Crystal Harris.

When they received the flyer for the free one-week program at the Illinois School for the Deaf in Jacksonville, they were skeptical it would be the right fit for their son, Casper.

Casper, 4, has bilateral hearing loss, epilepsy and a developmental delay.

“We’ve been to other events on a smaller scale before that were geared towards families with kids who have hearing loss and felt out of place there because our son also has other disabilities,” Kelly said.

Crystal called the number on the flyer and spoke with Violet Wiker, the Family Liaison for the University of Illinois Chicago’s Division of Specialized Care for Children. Violet helps families enroll in the Institute and addresses any questions or concerns they may have. 

Crystal said she talked to Violet for more than two hours.

“She assured me that there were kids of all different learning abilities here, that they would be in a classroom setting… she really sold it to me, really made me feel comfortable,” Crystal said.

She and Kelly then made the trip from Chicago with Casper and his big brother, Courtland. Once they arrived on the School for the Deaf campus, they knew they made the right choice.

“We couldn’t have felt more welcome… We’re used to feeling out of place, so it felt really good to come somewhere and feel normal for once,” Kelly said. “Coming here just felt like going home.”

A total of 22 families from across the state attended this year’s Institute from June 11-16. The Institute is for Illinois parents of children from birth to age 7 who have a significant hearing loss.

Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.  Lecture topics include:

• Child development
• Types of hearing loss
• Language development
• Communication choices
• Assistive communication devices
• Deaf culture
• School programming

Other activities include meeting in small groups to discuss specific concerns and connecting with other caregivers.

The children with hearing loss attend classrooms based on their age group. Experienced teachers and aides for children who are deaf or hard of hearing oversee these classrooms.

Attending children also can receive hearing, vision, psychological, speech, language and educational evaluations. They also get to play with other children who have a hearing loss.

Siblings also attend the Institute and participate in fun and educational activities, including art projects and learning to sign.

There is no cost for families to participate in the Institute. Meals and housing are provided at no charge.

“One place, all questions answered”

Laura Colic’s son Liam is almost 5 and profoundly deaf. He wears bilateral cochlear implants that he’s had for a little over a year.

“I just wanted to get as much information to make sure that we give him all the opportunities, especially since he’s starting kindergarten in the fall,” Laura said of her decision to attend.

One of her favorite experiences from the week was listening to a panel of Deaf adults share their experiences.  

“When you’re in it with little ones, it’s hard to see what that may look like as they grow up. I love the exposure to just the Deaf culture. Even Liam has loved that. He has been so excited to see adults with cochlear implants” she said.

Laura also praised the knowledge of the team of professionals who spoke with families and provided evaluations for the children.

“Their knowledge is phenomenal, and I feel like it’s golden,” she said.

“I wish I could take them with me back home and just create this bubble for Liam. But I’m happy to take the knowledge that they’ve given me, the assessments they’ve provided, the one-to-one time with each of the different people that have worked with Liam and assessed Liam. The evaluations are just phenomenal.”

Sylvia Gavina is mom to 4-year-old Freddy. She appreciated the opportunity to see and understand what Freddy’s hearing loss truly means for him. 

“Being able to meet with the professionals and learn what we did in a week takes it to a different level. At home, you might have an appointment one week and then wait three months for the next one. Here, we are leaving with a baseline. One place, all questions answered,” she said.

Sheryl Stone’s daughter Nevaeh is 4 ½ and attends the Illinois School for the Deaf. She said the Institute gave her an eye-opening look into how Nevaeh experiences the world. An education session on the Deaf experience helped her understand better what it’s like to not hear and to rely on lip-reading, sign language and other communication methods.

Eddi Fowler said she also learned how to better communicate with her 2 ½-year-old daughter, Kacey. In addition to learning American Sign Language (ASL) and cued speech, Eddi learned more about available resources and how to advocate for Kacey. 

“I learned a lot, and I have a lot to take back home with me. I’ve got gigantic paperwork that’s going to help Kacey and my little family throughout the year with her education needs, her hearing loss, her autism, everything,” Eddi said.

“A community of families”

Three-year-old Christian has hearing loss in both of his ears. His parents Basia and Aaron said watching their son become more social with the other children was especially rewarding.

“He’s more expressive. With all the signing and the cued speech that we’re integrating, he’s using his hands more, different modes of communication. That’s something that we were really trying hard to get out of him at home and it’s been tough. But he seemed to really just open up to more people and other children as well,” Aaron said.

Sarah Berns attended the Institute with her son, Colsen, and daughter, Evelyn. Colsen, 7, was born with bilateral sensorineural hearing loss. However, his family was not aware of his hearing loss until he was 3 years old.

The Institute was the first time he could see other kids with hearing aids and cochlear implants and simply play with them and have fun.

Sarah said she also found a special connection with the other parents.

“I felt like I was all alone. And now I feel like I have a community of families that I can call when I need to talk to them about anything. I also got a lot of information about what my son is going through and what it’s like to be hearing impaired, which is the best connection that I could have with my son, and knowing more about him and what he needs,” she said.

The Institute was also just as valuable for Colsen’s big sister Evelyn.

“She sees that (hearing loss) isn’t something that’s terrible, her brother isn’t annoying, and that there’s this really cool language now that we can have between us that she wasn’t interested in before,” Sarah said. “There’s value in it for her… she has a newfound empathy that she didn’t have before.”

Sarah encourages all families of children with hearing loss to make the trip to the Institute.

“It is life-changing. There are people that value you for who you are, and they are only here to help and give you strategies to help you,” she said.

“A sense of comfort”

After spending a week at the Institute, Kelly and Crystal said they didn’t want to leave.

“We’re not ready to go home. This past week, I’ve felt a sense of comfort that I haven’t felt in a very long time,” Crystal said.

“And that’s saying a lot considering how much information overload has been happening,” Kelly added. “I feel like we should be feeling frazzled and overwhelmed with the amount of new information we’ve gotten, but instead I just feel clarity. I feel clear on where my son’s at, where we need to go, and the options that we have and resources that we have at our disposal.”

Sarah shared a similar sense of peace and optimism for her son, Colsen, after attending the Institute.

“Even though life is not the same plan I thought it was going to be, it’s still going to be wonderful…” she said. “Seeing these other people going through this and through their life, how their life has been impacted by having hearing loss, I realize that (Colsen) really hasn’t lost anything. He is just experiencing it in a different way, and that that’s OK, and that we’re going to be OK.”

Visit our Facebook page to see a photo album with more photos from this year’s program.  You can also see videos that highlight different parts of the Institute experience on our YouTube playlist.

The following organizations supported the 2023 Institute:

• University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC)
• Department of Human Services – Division of Rehabilitation Services
• Illinois School for the Deaf
• Illinois State Board of Education
• Illinois Department of Public Health
• Ann & Robert H. Lurie Children’s Hospital of Chicago

The 2024 Institute will take place June 13-16. Please see the below flyers for more details:

• 2024 Institute flyer in English
• 2024 Institute flyer in Spanish

For more information about the Institute and how DSCC supports children with hearing loss, call (800) 322-3722 or email dsccinstitute@uic.edu.

CountyCare awarded Tess Rhodes its Certificate of Excellence for her commitment and dedication

Tess Rhodes is a registered nurse on our Quality Improvement Team. She collaborates with her Division of Specialized Care for Children (DSCC) teammates and partner organizations across Illinois to make sure children in crisis have the right support.

A managed care health plan recently honored Tess for these efforts to protect the safety of children and families.

CountyCare’s Health, Safety and Welfare Team awarded Tess its Certificate of Excellence. The certificate recognizes her “tremendous commitment and dedication” to keeping County Care participants safe and meeting their families’ needs.

Tess said she couldn’t do this important work without DSCC’s care coordination teams and our partners in the community.

DSCC has a contract with CountyCare to provide care coordination to the children and youth with special healthcare needs in its Medicaid managed care health plan.

As a Core/Connect Care Quality Improvement Specialist, Tess helps DSCC’s care coordination teams when a participant enrolled in CountyCare has a critical incident.

Critical incidents are events or situations that create a significant risk of substantial or serious harm to a participant’s physical or mental health, safety or well-being. They can include:

• Abuse or neglect
• Harassment or bullying
• Death of a family member
• Significant injuries
• Medication or treatment errors
• Threat of self-harm

DSCC works with CountyCare to report these incidents and make sure our teams respond to reduce any risks for our participants and help them get the right resources and services they need.

When DSCC team members learn of a critical incident, they must report it to CountyCare within 24 hours of notification.

Tess says it’s important to first ensure that our child/youth is safe and that their family receives the right support for their situation.

Tess and the DSCC care coordination teams work alongside CountyCare staff, the child’s medical team and others to provide access to services and resources.

The DSCC Care Coordinator checks in with the family bi-weekly after a crucial incident to help and monitor the outcome. Tess assists in the process by guiding the participant’s Care Coordinator and providing more resources and materials for education.

Once CountyCare closes a critical incident, Tess continues to monitor the situation and provides final updates at the 30-, 60- and 90-day marks. She also coordinates meetings for all care team members to discuss the incident and develop a plan of support.

“This requires very detailed organizational skills, and Tess never misses an update or chance to help,” her supervisor, Quality Improvement Manager Brandon Bartels, said.

Brandon praised Tess’ “exceptional” communication with CountyCare and her collaboration to keep participants’ and families’ needs at the forefront.

“Tess has received accolades by email from their team multiple times, so this Certificate of Excellence proves not only have they valued her efforts in the past but her continued support for our participants, Care Coordinators, and relationship with CountyCare is truly making an impact,” he said.

Congratulations, Tess! We are grateful for your compassion, teamwork and commitment to children and families!

Illinois’ Maternal and Child Health Services Title V Block Grant application is open for public comment until July 21

Illinois families, you have an opportunity to share your input on the state’s latest Maternal and Child Health (MCH) Services Title V Block Grant application and report.

The MCH Title V Block Grant is a federal and state partnership to improve the health and well-being of all mothers, infants and children. The block grant is authorized by Title V of the Social Security Act.

Every state receives MCH Title V Block Grant funds. At least 30 percent of these funds must support services for children and youth with special healthcare needs.

The Division of Specialized Care for Children (DSCC) has managed Illinois’ Title V program for children and youth with special healthcare needs since 1937.

Each year, states must complete an application for future funding and an annual report of our MCH activities from the last federal fiscal year. DSCC has partnered with the Illinois Department of Public Health (IDPH) to help with Illinois’ latest application.

The 2024 MCH Title V Block Grant Application and 2022 Annual Report are posted on the IDPH website. You can also see Illinois’ updated MCH Title V Block Grant Action Plan for 2021-25, which includes the Title V priorities, national performance measures and strategies.

You can share your comments or recommendations on these documents until noon on July 21.

Please send comments to Title V Coordinator Cassidy Chambers at Cassidy.Chambers@illinois.gov.

More details are on the IDPH website.

For more information about DSCC’s Title V role, check out our Fiscal Year 2022 Annual Report.

Lily Brown and her entire family saw Taylor Swift perform at Chicago’s Soldier Field

Lily Brown and her family experienced a whirlwind week earlier this month that they won’t soon forget.

The 14-year-old Oak Forest girl graduated from eighth grade. She then played in an adaptive Little League Challenger baseball game.

But the week’s biggest highlight was seeing Lily’s favorite artist Taylor Swift in concert at Soldier Field in Chicago on June 2.

“It was a very special week for all of us,” Lily’s mom, Jennifer Brown, said.

A nonprofit group of Chicago-area firefighters called Project Fire Buddies made the unforgettable concert experience possible.

Lily has Rett syndrome, a rare genetic neurological disorder. The condition can severely affect abilities such as speaking, walking, eating and even breathing.

Lily has seizures and uses a wheelchair. Even though she doesn’t speak, she says a lot through her expressive eyes and huge smile.

She is also a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). DSCC partners with families to help them find the right services and resources for their child’s special healthcare needs.

In January, Lily turned 14. For her birthday present, Jennifer wanted to take her to see Taylor Swift, who announced her concert tour would include Chicago.

“I took her older sister, Grace, when she was about 9 years old to see Taylor Swift. It was a really special mother and daughter experience,” Jennifer explained. “I wanted Lily and I to have that same experience. Due to the pandemic, Taylor Swift hasn’t toured for a while.”

From the day the tour was announced, they searched for two accessible tickets nearly every day. But their search came up empty. Then, the Oak Forest Project Fire Buddies heard about Lily’s wish to see Taylor Swift.

The Oak Forest Fire Department created Project Fire Buddies in 2016. Its mission is to bring joy to kids struggling with serious illnesses and their families. Volunteers visit the kids throughout the year to deliver gifts for special occasions, play games, read books or just to say “hi” and spend time together.

“We love the fire buddies!” Jennifer said. “We’re so grateful for all that they do. They gave Lily a bike made specifically for her needs so that she can enjoy riding. This year, she’s also playing with the Challenger’s baseball team and enjoyed playing against the Project Fire Buddies team.”

Now, Project Fire Buddies has made Lily’s ultimate birthday wish come true and more.

“Our family usually has to use the divide and conquer approach. We don’t get to attend events together very often,” Jennifer said. “It was an incredible surprise to learn that our Oak Forest Fire Buddies chapter found tickets for our entire family and worked with Soldier Field to have the area accessible for Lily’s wheelchair. We were just blown away.”

Since no “Swifty” can go to a concert without bling, everyone made sure Lily had just what she needed for the big night.

“We made a cute ‘Shake it Off’ shirt with all the sparkle and bling any Swifty would be proud of,” Jennifer said. “We also made a sign, and friends also got her some flashy, light-up flare.”

The Brown’s had an amazing time – together – at the Taylor Swift concert.

“The show was incredible, and Lily loved it,” Jennifer said. “She did have a couple of seizures during the show but bounced back in time to catch her favorite song, ‘Shake it Off.’”

“Project Fire Buddies is hoping to expand to help more kids who are medically challenged or have life-threatening conditions,” Jennifer added. “The Oak Forest chapter is amazing and incredibly generous. They are an important part of Lily’s life, and we are so thankful.”

Visit our Resource Directory to learn more about Project Fire Buddies.

You can also read about the news coverage of Lily’s special concert experience:

• CBS Chicago news story
• Oak Forest Patch news story

Thank you to Project Fire Buddies for making Lily’s wish come true!

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.

“DSCC understands the importance of supporting families and coordinating care.”

Dr. Shubhra Mukherjee, also known as Dr. Sue, is the medical director of pediatric and adolescent rehabilitation medicine at Shriners Children’s Chicago.

Mukherjee currently cares for patients up to age 22. Her background includes working with young adults with complex healthcare needs and collaborating across medical specialties to help these patients and their families connect with the care they need.

She has served on the Division of Specialized Care for Children’s (DSCC) Medical Advisory Board (MAB) for more than 16 years.

Mukherjee’s expertise in physical medicine and rehabilitation combined with a deep interest in the transition of care for children with complex healthcare needs has been a great fit.

“DSCC understands the importance of supporting families and coordinating care,” said Mukherjee. “I appreciate their statewide focus and how the MAB serves as an avenue for clinician input on what changes are needed, sharing feedback about the struggles we encounter helping patients get what they need, and working together to find solutions.”

Putting the Focus on Transition

When Mukherjee joined the board, schools were just beginning to explore the need to help students build the skills needed to transition to adulthood.

“They were looking at ways they could better prepare students to go on to jobs, college and life after high school,” Mukherjee explained. “In pediatric care, we realized that we needed to be doing the same thing for children with complex healthcare needs and their families.”

The DSCC team had the idea to increase the participation of medical professionals at the annual Illinois Statewide Transition Conference. We wanted to create a more proactive approach to helping children and their families make the transition from pediatric care to adulthood.

Mukherjee teamed up with DSCC’s former Title V Transition Specialist Darcy Contri to help put the idea into action.

“DSCC was already doing great work providing family support, tip sheets, and facilitating face-to-face conversations about transition. This was just one more piece of the puzzle,” said Mukherjee. “Darcy and I set up the first health care track for the Statewide Transition Conference with a goal of building more clinical engagement and increasing awareness and support for patients with complex health care needs and their families.”

The health care track has provided information and presentations with and for doctors and others providing complex care. According to Mukherjee, it continues to be a catalyst for building connections, sparking ideas, and inspiring healthcare professionals.

“I got to see that impact firsthand when one of our occupational therapists (OT) attended the conference with me,” Mukherjee said. “She was so moved that she became a big proponent of the OT’s role in developing and teaching adolescents skills related to health care.”

Opportunities to Collaborate

Mukherjee appreciates how the MAB fosters collaboration, networking and the development of partnerships. This work continues to create more options throughout Illinois for patients with complex care needs.

“It’s very rewarding to grow my knowledge and connect with like-minded professionals across so many different specialties,” Mukherjee said. “We’re able to share, provide feedback, and exchange ideas around removing barriers and supporting patients with complex healthcare needs at all stages.”

Mukherjee said DSCC also continues to be a major source of support for her own patients.

“Care coordination is so important for these families,” said Mukherjee. “DSCC helps them find the right care or specialist, get to appointments, and locate funding for the services they need to stay well and engage in their community. DSCC is there for the child and family.”

Mukherjee also leans on DSCC for updates and information.

“DSCC helps me keep track of program changes and learn about new services or programs that are available,” Mukherjee emphasized. “DSCC plays a vital role in sharing information and connecting the many different entities that individuals with complex needs depend on for their care.”

Awareness Brings Progress

Mukherjee said there is still a great need for education about the transition to adulthood and its importance.

“I’m glad to see the growing awareness and interest by professionals in helping youth develop the skills they need to be successful as adult users of the healthcare system,” said Mukherjee. “We are seeing more adult providers who understand the needs of young people with disabilities who are aging out of pediatric care.”

Awareness has brought progress, but challenges remain.

“Pediatric and adult care are not set up in the same way. For example, a spina bifida clinic and spinal care clinic are similar, but they are not the same. Adults with complex conditions going to a spinal care clinic may not be getting all of their needs met,” said Mukherjee. “The special pediatric clinic that addressed all their needs as a kid doesn’t exist in the adult care system.”

Mukherjee’s own focus on the transition to adulthood remains as strong as ever.

“I’ve been following some of the research initiatives at the University of Illinois Chicago. It’s exciting to see they are collecting data, exploring different aspects of complex care and its costs, and working towards building a framework that brings all the pieces together for adults with complex care needs,” she said.

“DSCC plays a vital role,” Mukherjee noted. “Sharing their information and ensuring it’s always there for the families we serve is important.”

Thank you, Dr. Sue, for your leadership to help families and professionals support the successful transition to adulthood!

Visit our Medical Advisory Board page to learn more about the MAB and its mission.

Free virtual training sessions in English and Spanish for Division of Specialized Care for Children participants, their families and all who are interested

Navigating the health insurance maze can be frustrating.

We’ve heard our participant families’ feedback and want to help improve the process.

Please join the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) for our new education series on important health insurance topics.

These free, family-focused sessions will help you better understand your coverage and benefits.

Sessions are virtual and open to DSCC participants, their families/caregivers and anyone interested in these topics.

The DSCC Health Insurance Education Series is the result of DSCC families’ questions and suggestions from our Family Advisory Council.

Our Benefits Management and Research (BMR) team will explain a different topic and answer your questions each month. They will present each session in English and in Spanish via Zoom.

Save the date for each session:

• Understanding Your Insurance
  
  English: March 7, 6 p.m.
  Spanish: March 8, 6 p.m.
  
  This training will help you understand your health insurance. It will go over the types of insurance plans and some important words to know. You will also learn what to do if you have many insurance plans and how to find a doctor.
  
  Sign up for Understanding Your Insurance in English
  Sign up for Understanding Your Insurance in Spanish

• Medicaid Eligibility and Coverage
  
  English: April 11, 6 p.m.
  Spanish: April 12, 6 p.m.
  
  This training will help you learn about Illinois Medicaid programs. It will discuss who can have Medicaid and the programs for children and adults. You will learn what Medicaid covers and how to keep Medicaid coverage through the yearly redetermination process.
  
  Sign up for Medicaid Eligibility and Coverage in English
  Sign up for Medicaid Eligibility and Coverage in Spanish

• Insurance Appeals
  
  English: May 9, 6 p.m.
  Spanish: May 11, 6 p.m.
  
  This training will cover information on health insurance appeals. You will learn what to do if your insurance doesn’t approve a service. You will also learn more about the appeal process and how to write an appeal letter. Examples will be available.
  
  Sign up for Insurance Appeals in English
  Sign up for Insurance Appeals in Spanish

Details about each series session are also posted on our Events page.

Each session will be recorded. You can access the recordings and related materials on our Family Education Webinars page.

There is no cost for families to participate.

If you have questions before or after a session, please email dscc@uic.edu or fill out our Contact Us form.

We hope you’ll join us!

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.

Petra Petty hopes to promote greater understanding and disability representation

Petra Petty says she’s fought for greater understanding and representation of the disability community her whole life.  

The 17-year-old Kewanee high school student was born with cerebral palsy and uses a wheelchair. As she’s grown, she’s advocated for greater accessibility in her school district’s buildings. She also successfully pushed for a wheelchair swing at a local park playground.

She’s also passionate about other social justice issues and being an advocate for others.

Now Petra gets to share this passion and her experiences with a wider audience.

Petra recently started a podcast called “Roll With It.” The podcast focuses on living with a disability, current events, pop culture and more.

“I always had a desire to start one,” Petra said. “I’ve always loved talking about my opinions, and I’ve always been on social media, but I felt like I needed a longer form to share my thoughts. So, I just decided to make one. And I really love podcasts.”

Petra is a participant in the Division of Specialized Care for Children (DSCC). DSCC partners with families to help them find the right services and resources for their child’s special healthcare needs.

Petra says DSCC has helped her family with insurance coverage issues and how to navigate the healthcare system as a whole. As Petra has grown, she gets to speak with her DSCC Care Coordinator herself during regular check-ins.

“I really love talking to her and having someone to ask questions to and who I can also relate to,” Petra said of her current Care Coordinator Sarah Kelly. Sarah also has a disability and uses a wheelchair. “It helps a lot.”

Petra started the “Roll With It” podcast in September. She started with weekly episodes and took a short break during her high school exams and the holidays. She thinks of different topics to cover by drawing inspiration from current events, feedback from her social media followers and daily life experiences.

“People don’t understand disability,” she said. “I talk about the struggles and the dynamics of it. I want to show non-disabled people how it really is and not just what they think it is.”

Petra’s received great feedback so far.

“I have classmates that listen to it and teachers,” she said. “People have been supportive.”

Petra is also noticing a difference within herself since starting the podcast.

“I’ve learned how to be more open and honest and be less afraid. It’s given me a lot of confidence,” she said.

“Roll With It” is available on Spotify and Amazon Music.

Petra is excited to see where it leads. She currently plans to go to college and major in psychology and minor in political science or social justice.

Petra was also recently selected to join the Girls Committee of the Illinois Council on Women and Girls. Lt. Gov. Julianna Stratton chairs the council, which advises Gov. JB Pritzker and the General Assembly on policy issues affecting women and girls.

Participants on the council’s Girls Committee share their experiences and perspectives to help make Illinois a place where all girls can thrive.

Petra said she hopes to continue to be a force for positive change through the council.

She also encourages other teens to not let fear or doubt hold them back from trying something new and sharing their voices.

“If it doesn’t work out, it doesn’t work out,” she said. “You never know until you try.”

You can learn more about Petra’s background and podcast in this news article from the Kewanee Star Courier.

Congratulations, Petra!