Families have until Jan. 30, 2025, to share their input on a state plan amendment allowing CNAs to become paid family caregivers.

Families can now share their feedback to allow more parents/legally responsible adults (LRAs) to become paid caregivers for their children at home.

The public comment period is currently open for a state plan amendment allowing parents/LRAs to become paid caregivers if they are a certified nursing assistant (CNA) and employed by a nursing agency.

Currently, parents/LRAs are paid for providing skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. This rule applies to parents/LRAs of all children approved for Home Care Program services, regardless of the child’s age.

Allowing parents and caregivers who are CNAs to become paid caregivers is an important step in strengthening support for families of individuals who need in-home shift nursing.

This change requires an amendment to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver). It also requires the creation of a new state plan amendment. Both approvals must be in place to allow for this change.

The public comment period for the new state plan amendment is now open until Jan. 30. You can read the public comment notice for the state plan amendment on the Illinois Department of Healthcare and Family Services (HFS) website.

Here is how you can review the amendment and share your feedback.

Review the Amendment

• Visit the HFS website to download and/or print a copy of the proposed state plan amendment.
  
• Email HFS.BPPC@illinois.gov to request a digital copy of the proposed state plan amendment.
  
• Review a hard copy of the proposed state plan amendment at HFS’ offices at:
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

Share Your Feedback

HFS is accepting public input on the proposed state plan amendment through Jan. 30, 2025.

You can share your feedback in two ways:

• Email your input to HFS.BPPC@illinois.gov.
• Mail your written input to the Illinois Department of Healthcare and Family Services, Attention: Bureau of Program and Policy Coordination, 201 South Grand Ave. E., 2nd floor, Springfield, IL 62763

This public comment process is one of the best ways you can make your voice heard.

Next Steps

In addition to the new state plan amendment, we have worked closely with HFS to incorporate this new rule into the MFTD waiver. This waiver amendment is currently under federal review for approval.

There is currently no set timeline for the state plan amendment and the MFTD waiver amendment to be approved.

Once approved, we will notify our Division of Specialized Care for Children (DSCC) participant families as quickly as possible.

If you have any questions, please contact your DSCC Care Coordinator at (800) 322-3722. 

DSCC honors Meeka Hudson for her dedication to supporting Illinois children and youth with special healthcare needs and their families

Care Coordinator Meeka Hudson is the 2024 recipient of the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Award of Merit.

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

Meeka is a Care Coordinator in the Mokena Regional Office. She joined the Core Program team in 2018 and has played an invaluable role in empowering families ever since.

“Meeka is an exceptional Care Coordinator with a passion for helping her participant families navigate difficult situations and finding ways to reduce stress in their lives,” DSCC Executive Director Thomas F. Jerkovitz said.

“Her teammates praise her dedication, knowledge of resources and willingness to help. Meeka has also been instrumental in developing valuable education and networking opportunities for families based at the Mokena office.”

Meeka’s colleagues in the Mokena office nominated her for the award, noting her positive influence, expertise, compassion and creativity.

“Meeka’s dedication to her role is evident in everything she does,” Mokena Assistant Regional Manager Tami L. Peleckis said. “She is always ready to lend a hand, provide guidance, and share her expertise with her colleagues. Her positive attitude and willingness to go the extra mile make her an indispensable asset to our team.”

Program Coordinator Assistant Leslie Leske-Ely praised Meeka’s ability to break down information into manageable steps and empower families to take charge of their situations.

“She provides positive and innovating contributions to our office. Her ideas help in improving our office morale and family engagement,” Bilingual Care Coordinator Ana Lule said. “Meeka consistently goes above and beyond to ensure that families receive the support and resources they need. She approaches every case with empathy and a genuine desire to make a positive impact.”

Mokena Regional Manager Deanna Deleshe has worked with Meeka since she started at DSCC. When Meeka’s participant families wanted a space to network with other families in their same situation, Meeka saw a need and shared an idea with Deanna.

“Meeka was the inspiration behind our pilot of the Mokena Family Networking and Education Group called the Mokena Connection,” Deanna said. “Meeka also, along with other team members, was the inspiration behind all of our in-person office events (for participant families). We do our Winter Wonderland, our Spring Fling, our Summer Extravaganza and our Trunk or Treat.”

Meeka said she is “deeply honored and incredibly grateful to receive the 2024 Award of Merit.”

“This recognition is not just a personal achievement, but a reflection of the support, encouragement and inspiration I’ve received from the Mokena Regional Office Team,” Meeka continued. “I am truly fortunate to work alongside such talented, dedicated individuals.”

Meeka thanked DSCC’s leadership and added a special thank you to her managers Deanna and Tami, whose belief in her has made all the difference.

“This award is a testament to the teamwork, hard work, and passion that we put into everything we do,” she said.

Learn more about Meeka and her exceptional service to families in this video below:

DSCC staff nominated a total of 13 of their colleagues for this year’s Merit Award. As the winner, Meeka will receive a Merit Award memento, a $2,500 award and recognition from the Executive Director.

Congratulations to the rest of our 2024 DSCC Award of Merit Nominees:

• Daniel “Dan” Beagles, Training and Development Specialist, Mokena Regional Office (RO)
• Becky Helmink, Program Coordinator Assistant, Olney RO
• Andrea Hoskinson, Assistant Director Operations-Finance, Accounting and Procurement, Central Administrative Office (CAO)
• Amanda Kaufman, Care Coordinator, Home Care (HC) Region 3
• Cristina Lazala, Bilingual Program Coordinator Assistant, HC Region 2
• Cathleen “Cathy” Morrissey, Program Coordinator Assistant, Mokena RO
• Patricia Perez, Assistant Director of Operations-Research and Practice Initiatives, Chicago RO
• Yariela “Yari” Ramirez Beccue, Program Services Specialist, CAO
• Mary Ratermann, HC enrollment Specialist, St. Clair RO
• Adell Scott, Manager of HC Quality Improvement, St. Clair RO
• Paige Town, Assistant Regional Manager, Rockford RO
• Imani Wornum, Care Coordinator, HC Region 5

Learn more about all of the 2024 nominees in this recap video of the Award of Merit luncheon on Oct. 29 in Springfield:

Electronic Visit Verification (EVV) is a system that electronically documents the time and location of care that in-home nurses provide.

We have an important update about the in-home nursing services that Home Care Program families receive.

Your nursing agency must now comply with the Electronic Visit Verification (EVV) system. This system ensures accurate tracking of home-based healthcare visits. Your nursing agency may have mentioned EVV to you already.

We want to make sure you understand what EVV is and how it affects you and your nursing agency.

What is EVV?

EVV is a system that electronically documents the time and location of care that in-home nurses provide. Using GPS coordinates, EVV automatically collects shift clock-in and clock-out times and locations to access information on care delivery in real time.

The EVV system verifies:

• The nursing service provided
• The participant receiving the service
• The nurse or Certified Nursing Assistant (CNA) providing the service
• The date and location of service delivery
• The service start and end times

This information helps ensure there are no care gaps throughout the service schedule. It also helps make sure that nursing hours are billed accurately toward participant nursing hours allocations.

The EVV system overall helps ensure greater transparency and accountability for both caregivers and recipients.

Why is this important to my family? 

The EVV system allows for better tracking than paper time sheets or agency charting that Illinois Medicaid cannot access. This improved tracking allows for better program quality assurance monitoring and access to quality care.

When your nursing staff clock in or out with EVV, it ensures accurate times are available. Therefore, only the true amount worked is billed against your nursing hours allocation.

There is nothing your family needs to do with the new EVV system.

How does this affect my nursing agency?

As a federal requirement under the 21^st Century Cures Act, Illinois Home and Community-Based Waiver programs began phasing in EVV on Jan. 1, 2024.

Following months of townhalls, resources, and flexibility, the official compliance period for EVV begins on Oct. 31, 2024.

All nursing agencies enrolled with the Division of Specialized Care for Children (DSCC) will have six months to reach 50 percent compliance and one year to reach and maintain at least 75 percent compliance.

We are helping agencies reach compliance through outreach, education, and remediation plans, if necessary.

All agencies have access to technical support through the state’s EVV vendor, HHAeXchange. You can find more details on the:

• Federal Centers for Medicare and Medicaid (CMS) EVV webpage
• Illinois’ Electronic Visit Verification webpage
• DSCC’s EVV Information and Resources page

We are working with nursing agencies to make this transition as smooth as possible. 

Questions? 

If you have any questions, please contact your DSCC Care Coordinator. You may also call us at (800) 322-3722 or email dscc@uic.edu.

All Illinois families of children with special healthcare needs are welcome to share their feedback and experiences at this virtual forum.

Join us for an opportunity to connect with other families and share your feedback on topics that matter to you. 

Our next Family Advisory Council (FAC) open forum is on Nov. 14 from 9 to 11 a.m. 

This free virtual meeting is for all Illinois families of children with special healthcare needs. You do not have to be a Division of Specialized Care for Children (DSCC) participant to attend. 

Visit our open forum event page for the link to join the meeting. Please note that live Spanish translation will be available during the open forum.

The FAC guides our efforts to strengthen teamwork, improve communication and empower families to have a voice in their children’s care. The council also connects families to resources and other families who are on a similar journey. 

Our FAC has played an important role in developing:

• Our new DSCC Family Portal to help families more easily communicate and share information with their DSCC care coordination team
• New “All About Me” Page templates to help providers, care coordination teams, schools and other caregivers understand the likes, strengths and needs of each child beyond their medical diagnosis
• A free, virtual Health Insurance Education Series to help families navigate the insurance maze and better understand their coverage and benefits
• Improvements to our family survey process, including reducing the number of surveys that families receive 
• Updates to our online Resource Directory and more

You can find the minutes from past meetings and more details on our website’s Family Advisory Council page.  

If you have questions or would like more details on how to participate in the FAC, please email dsccfac@uic.edu.

We hope to see you on Nov. 14!

Home Care Program parent praises NurseNet as an easy way to find available nurses in your area

The search for in-home nurses can be exhausting for many families of loved ones with complex medical needs.

Home Care Program parent Shekia Wright understands this challenge.

She recently tried NurseNet to find available nurses for her 1-year-old son, Kaharri Pittman (pictured above). He has a tracheostomy and relies on a ventilator to breathe.

Shekia set up a NurseNet account and entered Kaharri’s nursing needs.

She quickly found two available matches from two different nursing agencies. Overall, she was impressed with how easy NurseNet is to use.

“It was easy to set up the account and easy to find available nurses,” Shekia said. “I would recommend NurseNet to any families looking for nursing.”

NurseNet is a new tool that makes it easier for families to find the in-home nursing care their child needs. We created NurseNet to be an online resource that connects families with available in-home nursing providers throughout Illinois.

Families can use NurseNet to share their nursing needs. Nursing agencies that are enrolled with the Division of Specialized Care for Children (DSCC) can see this information and contact families if they have available nurses who match the child’s care needs.

Nursing agencies can also use NurseNet to share information about where nurses are available.

This information can help families find suitable nursing care. It can also help nursing agencies identify opportunities to serve families.

How NurseNet Helps Families

• Easy Access: NurseNet is available 24/7, giving you the flexibility to search for nursing providers at your convenience.
• Comprehensive Listings: The tool includes a wide range of in-home nursing providers across the state, ensuring you have multiple options to choose from.
• Direct Connection: You can contact nursing providers directly through NurseNet, making the process of securing care for your child quicker and more straightforward.

How to Get Started

We encourage you to visit our NurseNet page and explore this new tool. There you’ll find guides and how-to videos to help you get started. 

If you have problems accessing NurseNet, please send an email to dsccexternalhelp@uic.edu.  

You can also talk to your DSCC Care Coordinator to help you get started. Your Care Coordinator can assist with the sign-up process during your next home visit.

We understand how important it is to have reliable, skilled nursing care for your child. We believe NurseNet will significantly improve your ability to find the support you need!

The MCH Bridges podcast shares the story of how DSCC partnered with parent advocates and state agencies to allow generators to be an MFTD waiver benefit

In August 2020, a powerful windstorm called a derecho struck Illinois.

The storm produced about 15 tornadoes in the Chicagoland area and caused widespread power outages. Many people were without power for multiple days.

After the storm, parent advocate Susan Agrawal compiled feedback from Home Care Program families about how the power loss affected their children and loved ones with complex medical needs. She then shared this feedback with the Division of Specialized Care for Children (DSCC).

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS). The Home Care Program serves individuals who need in-home nursing to safely live at home.

Many of these individuals are enrolled in the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile and Technology Dependent (MFTD waiver). These individuals often have tracheostomies, ventilators, gastrostomy tubes and other medical technology that depends on electricity.

The feedback Agrawal shared showed that many Home Care families wanted the ability to use MFTD waiver funds to pay for power generators for their homes.

DSCC took this feedback, did research and worked with HFS to pursue an amendment to the MFTD waiver to allow waiver funds to cover the cost of generators.

A recent episode of the MCH Bridges podcast tells the story of how this new waiver benefit became available for families. The podcast is from the Association of Maternal and Child Health Programs (AMCHP).

Dr. Molly Hofmann, DSCC’s Director of Care Coordination, Systems Development and Education, co-hosted the episode called “Generating Policy Solutions to Protect Children with Complex Health Care Needs During Emergencies.”

The episode highlights the importance of preparedness, especially in the face of natural disasters or power outages that can severely affect the care of children who are medically fragile and technology dependent.

It features the following DSCC team members and partners:

• Stephanie Leach, DSCC’s Associate Director of Systems of Care
• Courtney Kerfoot, DSCC’s Integrated Program Support Specialist
• Susan Agrawal, parent advocate, Director of the Family-to-Family Health Information Center at The Arc of Illinois and the founder and leader of MFTD Waiver Families in Illinois
• Pam Winsel of the Illinois Department of Healthcare and Family Services

Thank you to AMCHP for highlighting our efforts and partnerships to ensure children with complex medical needs have the life-saving technology they need in emergency situations!

You can learn more about how the MFTD waiver pays for home generators and other important benefits for Home Care families on our Waiver Services for Home Care Families page.

Families have through Sept. 28, 2024, to share input on waiver amendments allowing CNAs to become paid family caregivers and nursing rate increases.

Families have an opportunity to share feedback on several significant updates to the Medicaid Home and Community-Based Services Waiver for Those Who Are Medically Fragile, Technology Dependent (MFTD waiver).

The Illinois Department of Healthcare and Family Services (HFS) is the Medicaid agency responsible for the MFTD waiver. Many families in the Home Care Program have children who receive services through this waiver.

HFS is currently seeking approval from the federal Centers for Medicare and Medicaid Services (CMS) for waiver amendments that will:

• Allow parents who are certified nursing assistants (CNAs) to be paid family caregivers
• Increase rates for in-home nurses and CNA services

Read below for more details about these amendments and how to share your input.

CNAs as Paid Family Caregivers

Plans are underway to allow parents/legally responsible adults (LRAs) to become paid caregivers if they are a CNA and employed through a nursing agency.

Currently, parents/LRAs are paid for providing skilled nursing services to their children if they hold an active registered nurse (RN) or licensed practical nurse (LPN) license. This rule applies to parents/LRAs of all children approved for Home Care services, regardless of the child’s age. (Read more about our efforts to make paid licensed family caregivers a permanent benefit.)

Allowing parents and caregivers who are CNAs to become paid caregivers is an important step in strengthening our support for families of individuals who need in-home shift nursing.

This update would give more parents/LRAs the opportunity to earn payment for the caregiving they provide their children at home.

This change requires an amendment to the MFTD waiver as well as the creation of a new state plan amendment.

Nursing Rate Increase

HFS is also proposing a 7 percent rate increase for in-home nurses and CNA services to take effect on Jan. 1, 2025.

This rate increase would affect:

• RN, LPN and CNA care
• In-home and facility-based respite care
• Nurse training rates

The proposed rates are as follows:

• RN, $57.78 per hour
• LPN, $48.15 per hour
• CNA, $32.10 per hour

We hope this rate increase can help make more high-quality nursing options available for our participant families.

Transitional Care Services provided outside the home (not an MFTD waiver service) is expected to have a rate increase from $950 to $1,300 a day. This increase would also take effect on Jan. 1, 2025.

Other Key Updates in the Amendment Include:

• Adds adaptive equipment and assistive technology as new services.
• Makes pest control a post-approval process. This change means families will not need to receive prior approval for pest control services.
• Makes the Division of Specialized Care for Children (DSCC) the entity responsible for the prior approval for home accessibility modifications, vehicle modifications, medical equipment operating expenses, adaptive equipment, placement maintenance counseling and assistive technology.
• Removes the requirement of two bids if the cost exceeds $2,000 for waiver services. This change is necessary to help increase access to services.

Share Your Feedback

The public comment period for these proposed waiver amendments is now open.

To review the full list of proposed waiver updates, you can:

• Read the public comment notice on HFS’s website.

• Review a hard copy at HFS’ offices at:
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

The deadline to provide feedback is Sept 28, 2024.

You can share your feedback in two ways:

• Via email to HFS.HCBSWaiver@illinois.gov
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

This public comment process is one of the best ways you can have your voice heard.

HFS will send your comments to the federal CMS as part of the waiver approval process.

If you have questions, please contact HFS’s Waiver Operations Management Unit at (217) 524-4148 or (844) 528-8444.

This free in-person training will take place Sept. 24-25 at UIC’s Simulation and Integrative Learning Center in Chicago.

Registration is now open for a special in-person training program for the families and caregivers of children with complex medical needs.

This free two-day training will take place Tuesday, Sept. 24, and Wednesday, Sept. 25, at the University of Illinois Chicago Simulation and Integrative Learning (SAIL) Center on the fifth floor at 1220 S. Wood St. in Chicago.

Families have shared the need for more support for parents/caregivers of children with complex medical needs. We are excited to partner with Almost Home Kids to provide this valuable training opportunity. It will offer essential tools and knowledge to help you in your caregiving journey.

You may attend this training if you:

• Are the parent or caregiver of a child in the Home and Community-Based Services Waiver for Those Who Are Medically Fragile Technology Dependent (MFTD waiver)
• Have prior experience in caring for a child with a tracheostomy (trach) tube and/or a child with a trach tube and ventilator
• Are able to commit to online learning before the in-person learning days
• Can attend both dates to complete the training

The training will be from 8 a.m. to 4:30 p.m. each day. The in-depth curriculum will include:

• Reducing the risk of infection
• Skin care
• Daily care of the child with a tracheostomy and ventilator
• Activity and movement
• Equipment and alarms
• Gastrostomy care and feeding
• Tracheostomy basics
• Respiratory assessment and interventions
• Ventilator training with hands-on practice
• Emergency preparedness
• Caregiver resiliency and well-being
• Simulation learning experience

You can also see the Caregiver Simulated Training flyer for more details.

Please sign up online to participate in the training. There is no cost to attend.

For more information, contact Yolanda Rivera, Nursing Professional Development Specialist and Clinical Educator, at connect@almosthomekids.org or (630) 271-9155, ext. 114.

This training is part of our efforts to use federal funding from the American Rescue Plan Act to improve support and services for families of children with complex medical needs.

Almost Home Kids (AHK) provides a bridge from hospital to home through an innovative community-based care system for children with medical complexities. Its services include:

• Responding to the needs of families
• Training caregivers
• Advocating for accessibility and inclusion
• Educating healthcare professionals

Almost Home Kids has locations in Chicago, Naperville and Peoria.

The 2024 Illinois Statewide Transition Conference is happening on Nov. 7-8 in Springfield

Luz Diaz said she struggled emotionally before attending the Illinois Statewide Transition Conference.

She felt isolated and unsure of the future for her daughter, Ariana, now 20. Ariana has cerebral palsy and quadriplegia along with hearing loss and developmental delays.

The knowledge she gained and the connections she made with other families during the 2023 conference immediately lifted her spirits. Luz now feels more hopeful for what lies ahead.

“Before I came here, I was depressed. I felt so lonely. Now that I’ve seen everything here, my thoughts have changed. I don’t feel lonely. I feel like I belong, and I feel like this is my family,” she said. “Now I feel like I’m not alone.”

The Diaz family were among 370 people who attended the 2023 transition conference in person in Bloomington-Normal.

The conference, titled “Stepping Stones of Transition,” returns for 2024 at the Crowne Plaza in Springfield, Ill., on Nov. 7-8. This year’s event is in person only.

The conference highlights opportunities and resources available for youth and young adults with disabilities and complex medical needs as they transition to adulthood. It’s a “one-stop shop” for gaining valuable resources, making connections and learning alongside individuals who are on the same journey.

The “Stepping Stones of Transition” conference is for youth, parents, caregivers, vocational specialists, healthcare providers, educators and others who work with youth and young adults with disabilities.

Youth and young adults can visit vendors, attend workshops and learn how to plan for their future, including:

• What happens after I leave high school?
• How do I sort through the maze of resources?
• What steps can I take now to prepare for upcoming changes?
• What skills are important for me to develop?

Highlights for 2024 will include learning about supported decision-making from keynote speaker and self-advocate Derek Heard along with Allison Cohen Hall from the Center on Youth Voice, Youth Choice.
You can also attend sessions on:

• Self-determination
• Advocacy
• Employment
• Future planning
• Post-secondary education
• Health care

The Division of Specialized Care for Children (DSCC) helps sponsor the transition conference and serves on its steering committee. We also can pay for the conference-related expenses for our participant families to attend.

DSCC paid the conference-related expenses for 25 DSCC participant families to attend the 2023 conference that took place in Bloomington-Normal.

“An Amazing Opportunity to Learn and Connect”

DSCC participant Vera Lynn Lindquist, 18, attended the transition conference both in 2022 and 2023. She has autism, attention-deficit hyperactivity disorder, anxiety disorder from childhood, tinnitus and hearing loss.

Vera enjoyed exploring the transition conference’s booths and sharing about the goals she has worked on.

“I know a lot more about autism awareness and speaking up and speaking out…” Vera said. “I’ve self-advocated at school. I reached out to my teacher on my laptop, I emailed him. I was behind on a lesson and let him know. He came and helped (me). It made all my teachers very happy.”

Vera attended the conference both years with her grandmother and legal guardian, Cheryl Calcese.

“We’ve used many of the independence and decision-making strategies we learned about,” Cheryl said. “Vera got a debit card. She has a money limit on it when she goes out for pizza and other group social events. She has an app on her phone to figure out the tax and tip. She adjusts everything according to her budget. She’s doing well with that and hasn’t gone over her budget once!”

The transition conference also gave Vera an opportunity to build her self-esteem and self-advocacy skills.

“She feels very comfortable at this conference, and it shows. She’s visiting with vendors and participating in sessions. Here her independence is shining. It’s very cool,” Cheryl said.

Cheryl also gained more resources and knowledge for herself.

“It’s always an amazing opportunity to learn and connect,” she said. “Thanks to the conference, I understand more about legal guardianship for adults and where to go for the paperwork for free or low-cost.”

Cheryl also learned more about the Americans with Disabilities Act (ADA).

“Vera and other students with disabilities had to miss their school homecoming,” she said. “In one of the sessions, I learned that the ADA covers social events. I connected with an organization that can help me make sure these students won’t miss their prom.”

Ariana’s mom, Luz, said she is grateful to everyone who organizes the conference so she can help give Ariana the best quality of life as she grows into adulthood.

Ariana’s father, Edgar, said he felt like the world was closing in on him before he attended the conference. By the end of last year’s event, he said he felt motivated after learning how conference speakers with disabilities advocated for themselves to have greater independence and a better quality of life.

Register and See the 2024 Schedule

The general public and professionals can visit the Statewide Transition Conference website to register and see more details.

For DSCC families, the conference schedule and more details are available:

• In English at: https://go.uic.edu/DSCC2024TransitionConferenceInfo
• In Spanish at: https://go.uic.edu/DSCC2024TransitionConferenceInfoSp

DSCC participants can register online:

• DSCC Transition Conference Sign-Up in English
• DSCC Transition Conference Sign-Up in Spanish

The deadline to register is Oct. 18. Please note that space is limited. Registration may close earlier if all spaces are filled.

Need financial help to attend?

If you are a DSCC participant family, we may be able to fund the conference-related expenses for your child and family, caregivers, nurse and/or personal attendant. These expenses include the cost of the hotel and transportation.

The Illinois Statewide Transition Conference Steering Committee has also set up a scholarship program to help youth with disabilities and their families attend the conference. The scholarship is open to:

• Individuals with disabilities
• Immediate family members of a person with a disability
• Guardians for a person with a disability

The amount of scholarship money available depends on each person’s needs.

Please fill out this scholarship form to apply. (The scholarship form is also available in Spanish.)

The deadline to apply for the conference scholarship is Oct. 18.

For more details or help with registration, please contact DSCC Title V Transition Specialist Claire Cook at (800) 322-3722, ext. 21812, or clairer3@uic.edu.

The 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing provided education and connection to 27 Illinois families.

Marcellus Weldon and his daughter, Mariana, were born with the same rare genetic disorder called Treacher Collins syndrome.

It affects the development of the head and face, including the ears.

“We don’t have any ear canal or any ear at all, on both sides. So, we’re profound to moderate deaf. It just happens at birth,” Marcellus explained.

He uses the analogy of a car to describe living with their disabilities.

“Growing up, I was the passenger, and my mother was the driver because she also has the same condition as me,” he said.

“Now that I’m the parent, I’m the driver and Mariana is the passenger. And we have to go through hills, valleys, twists and turns together. And there’s going to be things that I just can’t do with her.”

The desire to give Mariana, 6, the knowledge and tools necessary to be her own “driver” led the Weldon family to the 2024 Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing.

The Institute is a free, annual program for parents and caregivers of children ages 6 and under who have an identified hearing loss. It focuses on helping families find answers, build connections and access resources all in one place.

During the four-day program, Marcellus watched Mariana bond with other children. He also learned more about his family’s type of hearing loss, education options and how to best support Mariana through school and beyond.

“It’s nice for me to see her thrive not only academically but socially, and she’s just been blossoming like no other. And that’s a beautiful thing to see,” he said.

“She has a community. She has somewhere to go,” Marcellus continued. “She has resources that I never had — someone to fill up her tank, using that analogy.”

The Weldons were among 27 families from all over Illinois who attended this year’s Institute from June 13-16 on the Illinois School for the Deaf (ISD) campus in Jacksonville.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors.

“Parent Institute for me is exactly the soul and the heart of what DSCC’s mission is. You have our mission statement as partnering, helping and connecting. And this program is the epitome of what that is,” said Violet Wiker, DSCC’s Family Liaison who helps families enroll and prepare for the Institute.

Continue reading and watch the recap video below to for powerful parent and staff testimonials from the 2024 Institute:

Expert advice and guidance

The Institute provides valuable education and networking for children with hearing loss, their parents/caregivers and their siblings.

Participating parents and caregivers attend daily lectures by experts in the field to learn about raising a child with hearing loss. They also meet in small groups with professionals to discuss specific concerns and connect with other caregivers.

“They go through classes, they have educational experiences, they get to make friends that are people that are living their journeys and then interacting with the professionals that can give them great advice and guidance and expertise on how to go forward from here,” Violet said.

The children with hearing loss attend classrooms with experienced teachers of children who are deaf or hard of hearing. They play with one another and often develop deep friendships.

Each child also has the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations.

“All of those are these amazing comprehensive reports that (families) can take with them out into their communities where they need those reports and those recommendations,” Violet said.

Siblings also attend and stay with their families in the ISD dorms. The siblings have their own teachers and take part in fun recreational activities.

“No one ever leaves disappointed and without fail, by the time we depart at the end after the graduation ceremony, people are always very grateful, glad that they came and they have taken away a lot of knowledge and information,” said Angela Kuhn. Angela is an ISD administrator who serves as the director for the Institute.

“They have really a connection with the staff here at the School for the Deaf and DSCC employees that lasts for a lifetime.”

“We understand each other”

Mayra Villarreal attended the Institute looking for knowledge, community and others who would understand her family’s situation.

Mayra’s daughter, Miliani “Mili” Carmona, 6, has a rare genetic mutation that causes progressive hearing loss. It also causes retinitis pigmentosa, a condition that affects the eyes and leads to gradual vision loss, as well as seizures and other neurological problems.

The Institute helped Mayra understand how Mili perceives the world.

“The first thing that really hit a ‘wow’ moment for me was when we were doing the educational part about the hearing impairment, and they played that hearing loss simulation video. And hearing where she was, it was just surreal because you don’t really get it. You could try all you want to understand what your child’s going through, but you don’t get it unless you’re in it…” she said.

“It broke my heart. But it also made me understand her more… and see why things have been so hard for her.”

Mayra also found understanding for herself from both the Institute staff – many of whom have hearing loss themselves or are related to someone with hearing loss – and the other families.

“Everybody’s connected in some sort of way, and that’s why I feel like everybody here has such a passion for it,” Mayra said. “I’m lucky enough to take back these relationships that I have built with these parents because we might not be on the same journey, but we understand each other.”

Parent Megan Andresen and her 5-year-old son, Victor, are both deaf from Waardenburg syndrome.

“Coming into this I wanted to learn about my son’s behavior. Then I learned about implants and cued speech and different things, and it really opened my eyes.,” she said.

“The thing I think I’ll take away is as parents, whether we’re deaf or hearing, we have that same commonality because we do have deaf children, and it’s not different people in different groups,” she continued.

“It’s everybody really together, all coming here for the betterment of their children and to learn about their children.”

Sarah Dupuis’ daughter, Kimberly Pham, is 5 and was born with Down syndrome and mild to moderate hearing loss. As a special needs parent, Sarah said the opportunity to relate with other families is invaluable.

“Having a kid with special needs is so isolating. And to just be here with other families that face the same struggles… You’re sharing all of these stresses together, and it’s so cathartic,” she said.

Sarah and her husband, James Pham, also enjoyed the opportunity to immerse themselves in the classes and conversations without the distractions of day-to-day life back home.

“When you’re a parent of a child with special needs, you’re so overwhelmed all the time. And we just need resources, and it’s so hard to figure all those resources out by yourself,” Sarah said.

“You can come here, you can get the camaraderie with the other parents. You can learn about all kinds of things that you didn’t know about before. And it’s just so great. So, we’re really grateful for this.”

Inclusion and lifelong friendships

Lauren and Jonathan O’Brien traveled to the Institute with their daughter, Alannah, 7, and son, Josiah, 4.

Josiah has a genetic deletion on chromosome 15, which causes global delays with a bilateral hearing loss.

Alannah loved the sibling program and made a best friend with another girl in her group. Lauren and Jonathan also befriended the child’s parents.

“I think the most important thing was for us to find a community because we are blessed to be in a really good school district with a deaf and hard-of-hearing community. But there’s not always kiddos that also have all their diagnoses going on. And so here, you not only have the Deaf culture, but there were other kiddos that had similarities to him cognitively,” Lauren said.

“It’s just been amazing for us to have the parent side of it and then to know that (Josiah)’s being seen by all of these top specialists in the field. And then (Alannah)’s having the time of her life with other siblings. It’s so special for all of us to be here together and to get this experience.”

Ramie Nauman’s daughter Alivia is 6 and has a fluctuating hearing loss along with other health conditions. They attended the Institute along with Alivia’s big sister, Malley, who is 19 and studying in the deaf and hard of hearing education program at Illinois State University

Alivia is mostly non-verbal and communicates through sign language. Up until attending the Institute, Ramie and Malley were the only ones who signed with Alivia outside of her school.

“She doesn’t have a lot of people to actually talk to all the time. So, we wanted for her to be able to talk to other kids and other adults. And we’ve heard about the school (ISD) and that everybody signs, and so, she’s been super excited,” Ramie said of preparing for the trip to ISD.

Alivia’s excitement only grew once she arrived on campus and could sign with everyone she met.

“I love to see her in her element, talking to the cook and talking to everybody. So, I think that’s been really fun to watch her be able to communicate with everybody here, which she’s never had before,” Ramie said.

“I feel like everything’s just way less scary because she knows, ‘OK, I can talk to anybody,’” Malley added.

Alivia’s Institute classmate Kingslee also benefited from that immediate sense of belonging, his grandmother Constance said.

Back home in the Collinsville area, Kingslee was the only deaf child in his class. Therefore, his exposure to sign language and communicating with other kids was minimal.

During the Institute, Kingslee formed fast friendships and didn’t want to leave his classroom.

“It’s like a family here. Like my grandmother always said, ‘It takes a village to raise a child.’ And I see this here is his village,” Constance said.

To families thinking about attending the Institute next year, Constance has a simple message.

“Come. If this is your state, come,” she said.

Learn more about the Institute

Visit our Facebook page to see an album of photographs from the the 2024 Institute.

In addition to DSCC, the following organizations supported this year’s program:

• 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

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