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!

To celebrate Eloise turning 3, her family threw a “groovy” birthday party to provide comfort and treats for patients and their families at OSF Children’s Hospital of Illinois

Birthdays are major milestones in every child’s life. For families of children with rare diseases, they’re especially precious.  

Eloise was diagnosed with alobar holoprosencephaly when her mom, Rachel, was 20 weeks pregnant. This congenital condition causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).

“There are several types of holoprosencephaly and alobar is the most severe. We had no idea if she would be born alive or how long she would live,” Rachel said. “She spent 20 days in the NICU (neonatal intensive care unit) before going home on hospice just before COVID-19 hit.”

Her first birthday didn’t seem possible, let alone future birthdays. But Eloise defied the odds. The Division of Specialized Care for Children (DSCC) participant moved from hospice to palliative care. Eloise is now a feisty 3-year-old who brings joy to everyone she meets, Rachel said.

To celebrate Eloise turning 3 in November, her family planned a special birthday party to benefit the patients and their families at OSF Children’s Hospital of Illinois. The party, dubbed “Eloise Fest – Let’s Get Groovy,” provided plenty of treats and gifts from local businesses. The celebration also donated new sound machines to create a more calming setting for families.  

“The party was a way to give back and celebrate something we never dreamed possible,” Rachel said.

Eloise has spent time in nearly every pediatric unit of OSF Children’s Hospital. Rachel and her husband, Zach, got the idea for Eloise Fest when they noticed some of the hospital rooms didn’t have sound machines. 

“Eloise’s first and second birthdays we raised money for the Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations. This year we wanted to do something more tangible,” Rachel said.

“It may seem like a small thing but hearing the beeps and monitors all the time can be really stressful for families and patients. A sound machine helps provide calm by drowning out the medical stuff. During our stays, we usually set our machine on the ocean setting and it helps provide a sense of calm that’s hard to come by in a hospital. We wanted to help other families have that same sense of calm.”

Rachel and Zach worked with the hospital to find out how many sound machines each department needed. The couple then posted a wish list for their family and friends to buy 92 sound machines and related supplies. They fulfilled the wish list within three days.

“It was so touching to see how many people are impacted by Eloise’s story and are there supporting and loving her,” Rachel said.

Eloise’s “groovy” themed party also included her favorite music playlist and a VW bus photo station that traveled from floor to floor.  Local businesses also donated an array of food and non-food goodies for patients and staff.

“This has been three years we didn’t know that we would get,” Rachel said. “I’m grateful for the team that we have surrounding us that includes doctors who understand and all the support our friends, family and DSCC provides. How else would we have gotten here?”

You can see more photos from Eloise Fest and the list of local business donors on OSF Children’s Hospital’s Facebook page.

Read more about Eloise’s powerful journey on our Family Stories page.

Updates make it simpler and more convenient for our participant families to share feedback

Our participant families are important to us, and your feedback matters. We’ve updated our family survey process to make it easier for you to share your thoughts about our services.

All participant families receive a series of surveys at certain points in their child’s journey with the Division of Specialized Care for Children (DSCC). 

We’ve simplified the process so all families will receive our annual survey at the same time. We will also send you fewer surveys throughout the year.  

On Feb. 15,  you will receive our updated annual survey. This survey replaces the questions you previously received on your enrollment anniversary. 

All families will receive this annual survey every February, regardless of enrollment date. 

The survey asks how well DSCC team members are supporting your family and meeting your needs. It also asks about:

• Your contact preferences
• How and when you’d like to meet with our team
• How well our staff communicates with you

How Your Feedback Makes a Difference

Your responses will help us strengthen your services. It also informs our decisions about DSCC policies and procedures that affect your family. 

Our surveys are optional, but we strongly encourage you to share your experiences. We want to ensure we’re doing all we can to help you meet your family’s needs and achieve your goals.

We make it a priority to not only listen to our participant families but to follow up on your ideas and concerns.

Recent and ongoing improvement projects that stem from family feedback include:

• We are strengthening our financial assistance process to serve families more quickly and efficiently.
• We are providing more training to our team so they can better explain and share information about state benefits.
• We will begin hosting a series of free webinars in 2023 for participant families to learn about health insurance plans, Medicaid coverage and more.
• We created new tip sheets to explain available benefits and services through the Medicaid waiver for those who are medically fragile and technology dependent (MFTD waiver). You can find these tips sheets on our Waiver Services for Home Care Families page.

We also spent 2022 looking at how to make our survey process more convenient for families. These efforts included gathering feedback from our Family Advisory Council.

FAC members shared concerns about the number of surveys families receive. In response, we removed our series of surveys focused on education. Now you can answer just a few questions about your child’s education needs on the annual survey.

You can find a complete list of our surveys on our Family Surveys page.

Please be on the lookout for the new annual survey on Feb. 15.  You will receive this survey either by email or mail, based on your preferences.

If you have questions or need more information, please contact your Care Coordinator.

We appreciate your partnership and look forward to hearing from you!

The B.E.S.T. research study looks at how care coordination services that include mental health support can benefit teens with intellectual and developmental disabilities.

Adolescence can be a challenging time for teens with intellectual and developmental disabilities (IDD).

It’s not unusual to feel sad, stressed or overwhelmed.

A new research study opportunity can help teens with IDD learn how to manage these feelings and cope with times of change.

The study is called Behavioral Health Stratified Treatment (B.E.S.T.) to Optimize Transition to Adulthood for Youth With IDD.

The B.E.S.T. study wants to understand if care coordination services that include mental health programming can help teens with IDD live happier and healthier lives.

The study is available for some teens and young adults enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). Eligible DSCC participants must be enrolled in DSCC’s Core Program or Connect Care Program. (Please note that DSCC teens enrolled in the Home Care Program are not eligible to participate.)

All DSCC participants receive care coordination services. The B.E.S.T. study looks at if it’s more beneficial for DSCC teens to receive care coordination that also includes programs to help with mood and stress.

The B.E.S.T. study is a free and voluntary project. Teens can join the study if:

• They currently have a DSCC Care Coordinator and are enrolled in DSCC’s Core or Connect Care programs.
• They are between 13 and 20 years old.
• They have an intellectual or developmental disability.
• They can comprehend at a fourth-grade or similar level.
• They can read and speak English.
• They have a computer, tablet or smartphone they can use to access the internet.
• They have permission from their parent, caregiver or guardian (if they are under 18).

The B.E.S.T. study team developed the project with input from a group of B.E.S.T. Study Scholars. These scholars are teenagers with IDD who tested and reviewed all of the B.E.S.T. study materials.

“I loved working on the B.E.S.T. project because I got to share my experiences as a teen with a disability,” B.E.S.T. Study Scholar Erin Compton said. “Sometimes people with disabilities have health problems, but we aren’t going to let that stop us.”

Erin also praised the B.E.S.T. study team, led by Project Director Iulia Mihaila, Ph.D.

“I loved working with Iulia and the team because they respected me and all the other self-advocates on the project as leaders,” she said. “B.E.S.T. has a really good team, and I loved being a part of it.”

Erin’s mom, Diane Compton, said the project is a great opportunity to include the voices of those with disabilities.

“The B.E.S.T. team really excelled at including the voices and experiences of all who worked on the project,” she said. “It gives me such hope for the future that organizations are creating these opportunities for young people.”

Iulia said Erin and all the B.E.S.T. Study Scholars provided “immeasurable value” to the project.

“They gave us direction on how to make our work more relevant to teens with IDD and their families. Our work would not have been as strong without them,” Iulia said.

Teens who join the study will be put into one of two groups:

• Group A will receive care coordination services as usual from their DSCC Care Coordinator.
• Group B will receive care coordination services and mental health support from the B.E.S.T. team. This support is based on each teen’s needs and can include:
  • Mental health education
  • Online group sessions
  • Caregiver education and support

The study is a virtual program and should last for two years.

The B.E.S.T. study is a partnership between DSCC and the University of Illinois Hospital and Health Sciences System (UI Health), the University of Illinois Chicago’s (UIC) Department of Disability and Human Development and the UIC Department of Pediatrics.

The principal investigators are Dr. Benjamin Van Voorhees and Dr. Kristin Berg.

The B.E.S.T. study team includes mental health professionals from Illinois, California and Massachusetts. They are all working together to find a way to promote the health and well-being of teens with IDD.

You can learn more information for both teens and parents/caregivers on the B.E.S.T. study website.

If you would like to join the study or have questions, please email the B.E.S.T. study team at beststudy@uic.edu or call (833) 732-5778.

If you choose to join, you and your family can support research that helps other teens and families.

Teens will have the opportunity to learn helpful coping skills for their moods and emotions. Parents and caregivers can gain information on how to support their teens.

Both parents/caregivers and teens must agree to be in the study. (Note that if a teen is their own legal guardian, they can participate alone or with a parent/caregiver if they choose.)

Those who join will be compensated for their time.

We’re excited to be a part of this important research project!

David Martinez honored for his dedication to supporting Illinois children with special healthcare needs and their families

David Martinez is the 2022 recipient of the Merit Award from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The award recognizes exceptional employees for outstanding dedication and service to Illinois children with special healthcare needs and their families.

David is a Care Coordinator in the Chicago Central Office. In this role, he helps families develop personalized care plans for their children’s unique needs and connects them to the right services and resources.

“David has a remarkable ability to partner with our participant families and empower them to help reach their full potential,” DSCC Executive Director Thomas F. Jerkovitz said. “He works with families from a variety of cultural backgrounds and helps them feel understood and able to navigate the systems involved in their child’s care.”

David’s Chicago teammates say he has a talent for helping families and working “magic” in situations where others might not see a way.

“He is culturally sensitive, proactive and able to put himself in other people’s shoes so that he can better understand their situation and how best to partner with them to find a solution,” said Assistant Director of Research and Practice Initiative and former Chicago Central Regional Manager Patricia Perez.

David is a licensed clinical social worker. He grew up in El Salvador and studied criminal justice after coming to the United States.

He provided substance abuse programs at the Cook County Jail before deciding to pursue social work. This decision stemmed from his desire to help others and make an impact on families as early as possible.

David worked in mental health before joining DSCC in April 2016. He says he is honored to work for DSCC and with his amazing colleagues and managers in the Chicago Central office.

“Building strong relationships with my co-workers and the families we serve energizes me every single day,” David said. “Our families’ needs go beyond just medical. Every day is an opportunity to look at a situation from all different aspects and find a solution that can meet their needs. Sometimes it’s as simple as just listening.”

David said his DSCC career has helped him learn about many different cultures and that care coordination is not one-size-fits-all.

“Meeting the family where they are – that’s my starting point,” David said. “When I’m meeting with families, I tell them we are a team.”

David has helped achieve many successful outcomes for his participant families. In early 2022, he secured a $36,000 grant through the Guaranteed Rate Foundation to purchase and install a vehicle wheelchair lift in a participant family’s van and to make their bathroom wheelchair accessible.

But David says his proudest achievements are the relationships he builds with families.

“It would be impossible for me to deliver my passion in social work without having a relationship with families and open communication,” David said. “To be able to talk to families on a monthly basis and help them navigate through issues in life, that is my biggest accomplishment — having the trust the families place in me and DSCC.”

Our DSCC team nominated a total of 12 of our colleagues for this year’s Merit Award. As the winner, David receives a Merit Award memento, a $2,500 award and recognition from the Executive Director.

The other 2022 nominees are:

• Melissa Croft, Home Care Enrollment Specialist, Lombard Regional Office
• Christina “Tina” Glim, Care Coordinator, Mokena Regional Office
• Kristin Grubb, Administrative Aide, Peoria Regional Office
• Becky Helmink, Program Coordinator Assistant, Olney Regional Office
• Paula Holaday, Home Care Quality Improvement Specialist, Peoria Regional Office
• Marlo Johnson, Human Resources Officer, Central Administrative Office in Springfield
• Amy Jones, Regional Manager, Olney and Marion Regional Offices
• Danielle Osburn, Home Care Claims Process Lead, Central Administrative Office in Springfield
• Elma Saladar, Care Coordinator, Chicago Central
• Cindy Saxsma, Administrative Aide, Central Administrative Office in Springfield
• Katherine Serrano, Care Coordinator, Chicago Core

Congratulations, David! And a big thank you to all the nominees for their excellence on behalf of our participants and their families!

The annual Stepping Stones of Transition Conference gives families and professionals valuable resources and information to support youth on the path to adulthood.

Sixteen-year-old Ayla Etheridge says she’s faced many surgeries and physical limitations throughout her life.

She was born with a spinal lipoma (a mass of fatty tissue) and has experienced nerve damage and scoliosis. At one point, she needed a tracheostomy to breathe.

Ayla now uses a wheelchair and credits her physical challenges with “making my brain better.”

“I always bounce back and don’t want to just sit around and get depressed,” she said.

Ayla is also a careful planner, extremely tech-savvy and loves gaming, character design and writing.   

As she attended the Illinois Statewide Transition Conference, Ayla thought more about how these interests and skills will shape her future and career goals.

“I’m very independent and would like to do more things myself,” Ayla said. “This conference has kind of helped me visualize and think about my next steps.”

The 17^th annual transition conference, titled “Stepping Stones of Transition,” took place in East Peoria on Nov. 3-4. The conference helps both families and professionals learn about the resources, information and opportunities available for youth with disabilities as they prepare for adulthood.

Ayla and her mom, Rachel, were among nearly 450 people who attended in person.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) helps sponsor the conference and serves on its steering committee.

DSCC also covered the related costs for 34 of our participant family members to attend, including the Etheridges and the Barraza family.

“I am so thankful to DSCC for the fact they covered the cost to be here. That made a big difference in us being able to attend,” Anita Barraza said.

“Education empowers me”

Anita’s son, Daniel, 17, is a DSCC participant. His older sister Diana, 22, left DSCC last summer.

All three attended together along with dad, Jose, and Anita’s mother-in-law, who helped care for Daniel and Diana when they needed a break from conference activities.  

“It was great to have my husband be able to be part of the process and that both he and I could listen and take in the information,” Anita said. “(The conference) is also a nice way to spend time together as a family. It’s almost like a mini-vacation for us.”

Anita is an occupational therapist who works with school children, so she understands both sides of the need for information and resources when supporting young adults with disabilities.

“As a parent, we can feel so overwhelmed. Even if help is right there, that reach can be hard to do,” Anita said.

That’s why opportunities to learn about a variety of resources and network with other families and professionals are so important.

“These types of resources educate me on how to best provide for my children’s needs and for their future,” Anita said

Both Daniel and Diana have significant medical needs and are unable to safely live on their own.

Anita says it’s hard to think about, but she realizes must start planning for who can care for Daniel and Diana when she and her husband can no longer do it. Residential placement may be necessary in the future.

The Barrazas also want to learn about possible day programs that can offer one-on-one support to Diana and possible employment options that would work well with her needs.

“Education empowers me to be better prepared to help (Diana and Daniel) have a good quality of life,” Anita said.

“One step ahead”

Anita had told two other DSCC moms about the conference and encouraged them to attend. One of those moms is her friend Yessy Castillo.

Though Yessy’s son, Jacob Ortiz, is only 4 years old, she knew it was important to go. 

“I want to be aware of what services are available for Jacob,” Yessy said. “Most importantly, I want to be one step ahead. This conference allows me to get the information on what can benefit Jacob.”

Jacob was born with a cleft palate, an underdeveloped jaw and his tongue pushed back toward his throat. He also had malformations in his hands and feet, and his intestines did not rotate appropriately.

Jacob now has a tracheostomy and depends on a ventilator 24-7 to breathe.

“I appreciate getting the opportunity to meet people and attorneys for advice and support and more legal information on Jacob’s rights,” she said. “If I was not exposed to these events, I wouldn’t know what is available.”

While Yessy speaks limited English, she said the presentations all gave information in a way she could understand.

Melania Tinoco, who also speaks Spanish and learned about the conference from Anita, said connecting with other families at the conference helps her feel more confident.

“It helps seeing we’re all in the same boat and finding out we aren’t alone,” Melania said.

Her daughter Jeny is 14 and has been a DSCC participant since birth. Jeny has Pitt-Hopkins Syndrome, a rare genetic and neurological condition that causes developmental delays.

Melania said the conference has helped her plan for what happens to Jeny if she gets sick and/or can’t take care of her daughter. She also appreciated the breakout sessions on helping youth with disabilities respect their body and feel empowered to say “no.”

“The information has been helpful and inspirational,” Melania said.

Putting information into action

The conference consisted of informative breakout sessions in the areas of employment, education, health care and more.

DSCC participant Vera Lynn Lindquist, 17, and her grandmother, Cheryl Lindquist Calcese, said they enjoyed the “Awareness and Transition Services for Students with Disabilities” session. It gave them helpful information on sex education and tips for building good money management skills.

Cheryl is Vera’s legal guardian. She and Vera planned to start a new budget at home after the conference. Vera will get paid for doing chores, such as cleaning her room, helping with the laundry and feeding her two dogs and cat. She will also get a debit card so she can buy things and track her spending.

Vera has autism, attention-deficit hyperactivity disorder, anxiety disorder from childhood, tinnitus and hearing loss, and seizures.

She enjoys being an advocate, helping others and encouraging everyone to be kind.

During the breakout session, “Your Story Has Power: Great Expectations and Pieces of the Self-Advocacy Puzzle,” Vera stood up and actively participated during the presentation.

Vera and Cheryl hope to attend the transition conference again next year.

DSCC participant Sabrina Doueihi, 20, was among several self-advocates who shared their perspectives during the “Transition Success Stories” breakout session. She is currently a junior at Bradley College, where she is studying criminology. She hopes to go to law school and become a prosecutor.

Sabrina spoke about the importance of staying true to yourself and what you want to do. She also recommended that youth with disabilities focus on what they can do and who can help them achieve their goals.

“Trade stories and network”

For brothers Jaysen and Justen McMenamin and their parents, the transition conference was a good opportunity to plan for life after high school.

Jaysen McMenamin, 18, is a senior at Woodland High School near Streator, where he is an honor roll student and honorary captain of the school’s football team.

He says he’s interested in digital media and related job opportunities. But, he’s still deciding on the path that’s right for him after graduation.

Justen, 14, is a freshman at Woodland High and interested in coding. Both brothers have Duchenne Muscular Dystrophy and are enrolled with DSCC.

Their stepfather, Charles Cusick, said the family wanted to learn more about jobs and career fields that are accessible for the boys and provide more opportunities than what’s available in their small community.

They were also seeking information about camps and other recreation programs for Jaysen now that he has aged out of other programs.

The brothers enjoyed talking with some of the vendors about college resources, job coaching and training programs, and future housing opportunities.

Jaysen would like to live on his own but needs to make sure he has the right supports in place.

The brothers’ mom, Deanna Cox, said she appreciated the breakout session on Supplemental Security Income (SSI) benefits. Jaysen and Justen’s dad passed away in June, and the session helped her better understand how to help her boys keep the benefits they’re entitled to. 

The family met up with their DSCC Care Coordinator Kristin Lenover during the conference.

“If families can get away from work, there’s so much they will get out of being at the transition conference,” Kristin said. “Attending in person gives you so much access to all kinds of information. There are also opportunities to meet other families, trade stories and network.”

Thirty DSCC team members attended the conference to network, learn from others and strengthen their skillsets and tools to serve participant families.

DSCC also sponsored the conference’s healthcare track for providers who play a role in the transition from the pediatric to adult healthcare system and those who build youth’s capacity and healthcare skills to prepare for adulthood.

DSCC Transition Specialist Darcy Contri has helped plan the conference since it began 17 years ago. This year’s event was her last before she retires.

“I’m so grateful for and have loved being part of this great work,” Darcy said. “Partnering with talented people from organizations across the state to help others has made a positive difference in so many lives. It is my hope the annual conference will continue to make an impact on improving adult outcomes for youth with disabilities for many more years.”

Visit our Facebook page to see more photos from this year’s conference.