A DSCC Care Coordinator partnered with community organizations to create a custom SeizureSense alert system for a teen with complex needs and her deaf parents.

Getting the right amount of sleep each night can be difficult for anyone.

For Melissa and Tim Kearney, it can be especially hard. Keeping their daughter, Makaelyn, safe is an around-the-clock job that doesn’t stop when they go to bed.

Makaelyn is a happy, curious teenager with autism who is non-verbal. Her diagnoses also include cerebral palsy, muscle and bone deformities and a history of seizures. Monitoring her seizures and catching them early is essential.

This monitoring proved challenging for Melissa and Tim, both of whom are deaf and hard of hearing. Melissa also has cerebral palsy, which makes getting out of bed quickly more challenging.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is an important partner in helping the Kearney family navigate Makaelyn’s challenges. DSCC Care Coordinator Court Prather worked alongside Tim and Melissa for months to help them find an alert system that would meet their needs.

The hard work paid off, and Court connected the family with two organizations that could brainstorm a solution and provide funds for a custom alert system.

Thanks to Medlaunch UIUC and the Danny Did Foundation, Tim and Melissa can now rest easier knowing they have a safe and effective “SeizureSense” alert system.

“I can’t stop thinking about Makaelyn getting up and wandering or having a seizure. I’m up and down all night, checking to be sure she’s okay.” Tim explained. “Having an alarm that lets me know she’s up or having a seizure is a life-changer. Who knows? I might end up with a whole new personality thanks to getting a peaceful night’s sleep.”

Over a year in the making

The journey to develop the “SeizureSense” alert system for the Kearneys was long and filled with roadblocks.

“This alert system project has been over a year in the making,” Court explained. “We looked everywhere for an existing monitor system to catch Makaelyn’s seizures at night. We found an app that could be installed on a phone and would vibrate, but the vibration level was just not enough. The other systems we found in the U.S. all had an audible alert.”

Court wasn’t giving up.

“There was no straight path or easy answer for this challenge,” Court explained. “I spent a lot of time doing research, making calls and trying to get all the pieces and people to connect throughout the process.”

Everything changed when Court discovered the Danny Did Foundation and sent a project application to MedLaunch UIUC.

The Danny Did Foundation focuses on raising awareness about epilepsy, preventing Sudden Unexpected Death in Epilepsy (SUDEP), and helping families with seizure detection and prediction devices that may help to prevent seizure-related deaths.

MedLaunch UIUC is a student-led organization at the University of Illinois Urbana-Champaign. Students from a variety of majors and perspectives work with individuals with disabilities to design, build, and deliver devices that improve their independence and quality of life. MedLaunch accepts project applications each fall. Five or six teams review submissions. Each team chooses a project to tackle during the school year.

“The Danny Did Foundation was incredibly helpful,” Court said, noting the foundation awarded the family a grant and paid for the alert monitor.

“It was exciting to have MedLaunch take on our project and get to work tailoring the device to the Kearney family’s needs,” Court added.

The pieces started coming together to make an alert system for the family possible. “At each step, Court helped coordinate interpreters, project meetings, approvals and other details to keep the process moving forward.”

A passion for accessibility and creating person-centered solutions

MedLaunch Team members come from diverse backgrounds, including computer science, engineering, communications and more. Their love for tackling tough challenges and unique situations unites them.

“I’m studying engineering but hope to go to medical school,” said team lead Ryan Sullivan. “Our design process focuses on developing a product to fit a person’s specific needs. We get to brainstorm together, create products, and be very hands-on in helping people and making an impact. It’s very fulfilling.”

Tackling specific issues and unique situations inspires members to return to the club year after year. SeizureSense team members each had two or more years of experience with the club.

Court, Melissa and Tim, and their American Sign Language (ASL) interpreter, Teresa Fulling, were impressed with the Medlaunch team’s attention to detail and passion for accessibility.

“Everyone asked a lot of good questions that helped us narrow down and focus on what we needed,” Melissa explained. “We travel sometimes, but I didn’t think about making the alert system portable. Our (MedLaunch) team did! Keeping that in mind made a big difference in helping us figure out the best way to move forward.”

Throughout the process, the SeizureSense Team provided updates, asked questions and navigated various challenges.

installation day

The family and team felt a strong sense of anticipation and excitement as the SeizureSense installation crew arrived.

After a warm welcome, Ryan Sullivan, Matthew Tan, Hussein Thahab, Kriti Mathur, and Eric Vo unveiled the specialized SeizureSense system to the Kearney family. The system includes:

• An alert light and vibration component
  
• A monitor in Makaelyn’s room that communicates with alert devices in both parents’ bedrooms (they sleep in different rooms due to their medical conditions)
  
• A backup battery in case of a power outage

The first stop was Makaelyn’s room, where team members set up the camera and adjusted the system settings.

Next, the team set up alert system components in Melissa’s and Tim’s bedrooms. Each small, clear acrylic box contains a light and a vibration mechanism to wake the parents if the system detects motion in Makaelyn’s room. Melissa’s device also connects to her computer so that she can see the camera video anytime. 

Tim and Melissa eagerly watched every step. Throughout the setup process, ASL interpreter Teresa interpreted the Kearney’s questions so that team members could provide answers about how each part works and connects to other parts of the system. Court took many photos to document each step for the Kearneys.

Once SeizureSense was in place, the team carefully tested the system. It worked perfectly.

The last test required Tim and Melissa to demonstrate that they could take the system apart, put it back together and adjust the settings as needed.

A huge burden lifted

Melissa says the SeizureSense system is “a huge burden off my shoulders, and I can now sleep more peacefully knowing that we have a ‘night watch’ for our daughter.”

Over the last few months, Court and the MedLaunch team have provided invaluable support to make sure the SeizureSense system continues to work well for the Kearneys.

“The U of I team was truly passionate about solutions and what works best for us parents and what works out for (Makaelyn’s) care needs. They were willing to come back and continue problem-solving so that all different areas were thoroughly taken care of for long-term use at home,” Melissa said.

“I’m impressed with their time, willingness and thorough thinking in many different areas… They don’t give up until the project is totally accomplished!”

The Kearneys also praised Court’s dedication to finding a solution and showing a true understanding of their family’s needs.

“I want to give Court a huge thank you… for Court to connect a variety of different organizations or companies to collaborate or make this work is remarkable,” Melissa said

“Court really helps us to tackle so many barriers, such as making sure K (Makaelyn) has the seizure med support she needs, seizure alert devices, trying helping us with K’s dental barriers and helping (me) with phone calls for services and much more,” Melissa added. “It’s nice having a ‘village’ to support K’s needs in various areas.”

Thank you, Court, for never giving up on the Kearney family’s needs and developing strong partnerships to achieve their goals!

DSCC participant families, please be on the lookout for our annual family survey on Feb. 10.

Participant families, we want to hear from you!

Our annual family survey is coming soon, and your feedback helps us better support children, youth and families like yours. You’ll also have the chance to win a gift card. 

All Division of Specialized Care for Children (DSCC) participants will receive the survey starting Feb. 10. You’ll receive the survey by email or mail, based on your preferences.

Quick, Easy and a Chance to Win

• The survey takes less than 10 minutes to complete. 
• Filling it out is optional and will not affect your services. 
• If you respond, you could win one of five $50 Amazon gift cards.*

The survey asks about your experiences with DSCC, including how well our team supports your family and meets your needs.

How Your Feedback Makes a Difference

Your voice leads to real change. This short video shares what families told us during last year’s survey and how we’re using that input to make improvements:

Based on family feedback from last year’s survey:

• We are developing a customer service training for DSCC teams to strengthen our partnership with families. The training will focus on:
  • Communication
  • Teamwork
  • Sensitivity to the needs of children and youth with special healthcare needs
  • Response times
    
• We are also expanding our education and resource efforts to help families feel more informed, connected and supported through proactive care coordination.

You can learn more about how we use family feedback on our Family Surveys page.

Please be on the lookout for our annual survey on Feb. 10.

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

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

*Please note: Foreign national nonresident aliens are not eligible for the gift card participation prize.

Our annual family survey is an easy way to share your input and help improve our services.

Attention participant families, be sure to watch your mail or email!

On Feb. 10, all Division of Specialized Care for Children (DSCC) participants will receive our annual family survey.

This survey asks how well our team members support your family and meet 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

You will receive this survey by email or mail, based on your preferences. If you respond, you could win one of five $50 Amazon gift cards.*

Your responses will help us strengthen your services. They also guide updates to our 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.

* Please note: Foreign national nonresident aliens are not eligible for the gift card participation prize.

How Your Feedback Makes a Difference

Your ideas and feedback help improve our services to families like yours. We used family input from last year’s survey to:

• Train our care coordination teams to better understand the family perspective and tailor services to your unique needs and wants. 
• Educate families about the benefits of our DSCC Family Portal to easily communicate and share information with your care coordination team.
• Launch NurseNet, a new online tool to help families connect with available in-home nurses.
• Offer free webinars on important health insurance topics affecting families.
• Improve our language access to better support our families’ diverse backgrounds.
• Reorganize our Chicago offices to better serve the Chicago community.

Please be on the lookout for our annual survey on Feb. 10.

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

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

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:

The prestigious achievement recognizes our commitment to providing the highest quality service and support to our participant families.

We are proud to share a significant milestone for our University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) team.

DSCC has earned Case Management Accreditation from the National Committee for Quality Assurance (NCQA). This achievement recognizes our commitment to providing exceptional care coordination and related support to our participant families.

NCQA accreditation is widely known as a symbol of quality and shows an organization’s dedication to meeting high performance measures and continuous improvement.

“We are thrilled to receive NCQA Case Management Accreditation, which highlights the strength and person-centered focus of our care coordination services,” said DSCC Executive Director Thomas F. Jerkovitz.

“This achievement reflects the great work of our entire DSCC team to improve operations and strengthen how we partner, help and connect with families throughout the state. We hope our participant families can feel confident and empowered, knowing they have a strong support system focused on improving their quality of life.”

DSCC provides care coordination to Illinois children and youth with special healthcare needs and their families through several programs.

We tailor our care coordination to each family’s unique needs and goals. We partner with them to develop a care plan focused on a child’s medial, social, behavioral, educational and financial needs.

Our care coordination can include finding specialized medical care, helping families understand their child’s diagnosis and medical treatment plan, explaining insurance benefits and attending school meetings.

In 2021, DSCC’s leadership set a strategic goal to work toward NCQA accreditation. Our team members have worked for more than three years to achieve this major recognition.

NCQA purposely sets its accreditation standards high to encourage organizations to continuously enhance their quality. The standards aim to help organizations achieve the highest level of performance possible and create an environment of continuous improvement.

The NCQA Case Management Accreditation Program reviewed our care coordination and entire organization against the following standards:

1. Program Description: The organization uses up-to-date evidence-based information to develop its case management program and regularly updates the program with relevant findings and information.
2. Patient Identification and Assessment: The organization systematically identifies patients who qualify for its programs.
3. Care Planning: The organization coordinates services for patients through the development of individualized care plans.
4. Care Monitoring: The organization has systems in place to support case management activities and monitors individualized care plans.
5. Care Transitions: The organization has a process to manage care transitions, identify problems that could cause care transitions and prevent unplanned transitions, when possible.
6. Measurement and Quality Improvement: At least annually, the organization measures patient satisfaction, program effectiveness and participation rates.
7. Staffing, Training and Verification: The organization defines staffing needs, provides staff with ongoing training and oversight and verifies healthcare staff credentials.
8. Rights and Responsibilities: The organization communicates its commitment to the rights of patients and its expectations of patients’ responsibilities.

“Case Management Accreditation moves us closer to measuring quality across population health management initiatives,” said NCQA President Margaret E. O’Kane. “Not only does it add value to existing quality improvement efforts; it also demonstrates an organization’s commitment to the highest degree of improving the quality of their patients’ care.”

A big congratulations and thank you to everyone who helped us reach this milestone!

NCQA is a private, nonprofit organization dedicated to improving health care quality. NCQA accredits and certifies a wide range of health care organizations. It also recognizes clinicians and practices in key areas of performance. NCQA’s Healthcare Effectiveness Data and Information Set (HEDIS®) is the most widely used performance measurement tool in health care. NCQA’s website (ncqa.org) contains information to help consumers, employers and others make more-informed health care choices. NCQA can be found online at ncqa.org, on Twitter @ncqa, on Facebook at facebook.com/NCQA.org/ and on LinkedIn at linkedin.com/company/ncqa.

Participant families, please save our (800) 322-3722 number to your contact list!

As part of our commitment to serving our participant families, we want to ensure you can easily reach us whenever you need help or have questions.

Please take a moment to save our toll-free (800) number to your contacts list: (800) 322-3722.

This step will help prevent our calls from being mistaken as spam. It will also help ensure you receive important updates and support from your care coordination team.

Our (800) 322-3722 number remains the simplest and fastest way to reach anyone at the Division of Specialized Care for Children (DSCC).

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

Saving our number to your phone’s contact list can help improve the process in several ways:

• Have quicker access – Having our number readily available in your contacts can save time when you need assistance or have questions.
• Avoid spam filters – Saving our number reduces the likelihood our calls will be flagged as spam.
• Communicate more seamlessly – Having one number to call helps ensure smoother communication whenever you need support or would like to share feedback.

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

You can also use our new DSCC Family Portal to easily share information and communicate with your care coordination team. You can use the Family Portal to:

• Send messages
• Sign documents
• View important letters
• See a list of providers and much more

To access the portal, visit https://go.uic.edu/DSCCFamilyPortal.

To help you get started, we’ve created several tip sheets and videos for how to use the Family Portal. You can find these resources on our website at https://dscc.uic.edu/dscc-family-portal/.

If you have trouble accessing the Family Portal or need other support, please email dsccexternalhelp@uic.edu.

You can also speak with your Care Coordinator if you need to update your communication preferences.

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

We want to ensure our care coordination teams are easily accessible for everyone in our programs.

Thank you for your cooperation and partnership!

DSCC honors Ned Kostur for outstanding service to Illinois children and youth with special healthcare needs and their families

Care Coordinator Ned Kostur is the 2023 recipient of the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) Merit Award.

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

“Ned is an outstanding Care Coordinator. He is a trusted mentor to his teammates and a caring and dedicated partner to the families he serves, helping meet their needs and improve the quality of their lives,” DSCC Executive Director Thomas F. Jerkovitz said.

Ned is based in our Lombard Regional Office and works for DSCC’s Home Care Region 2. As a Care Coordinator in the Home Care Program, he helps families of children and youth who need in-home nursing to safely live at home.

Many of the DSCC participants Ned works with are on the Home and Community-Based Services Waiver for Those Who are Medically Fragile Technology Dependent (commonly called the MFTD waiver). These children and youth have more complex medical needs that require a higher level of care.

Ned helps educate their families about the services and benefits of the MFTD waiver and other state programs that can help meet their needs. He also guides families through the process of modifying their homes to support their child’s medical care and equipment.

“I meet with families, which I enjoy very much. It’s just a rewarding experience to get a piece of equipment or to finally find that right nursing fit for that family and just to see the smile on the family’s face as we’re aiding them in their journey in helping their child,” Ned said. “It’s just a great organization to work for.”

Ned began his journey with DSCC in 2003. Over the last two decades, he has worked in both the Core and Home Care programs.

Ned is a “go-to” for his colleagues who describe him as caring, compassionate, considerate, and hard-working. They also love how his passion for serving our participant families shines through in all his actions.

“Ned exemplifies what great care coordination looks like and its positive impact on the families we serve,” said Terri-lynn Jones Wood, Assistant Director of Home Care Operations for Regions 2, 4 and 6.

“He has a true desire to bring families a sense of relief and understanding that they have someone on their side, someone they can trust and rely on,” Home Care Region 2 Regional Manager Mariangely Spilotro-Marquez added.

“He takes great pride in his work and ensuring that families understand Home Care, the services provided, what his role is and how he can assist them.”

Ned draws on his experience in clinical psychology, biology, treatment and discharge planning, quality assurance, teaching and more to help others. His Lombard teammates appreciate his wealth of knowledge about DSCC processes and resources, sense of humor and willingness to help in any situation.

“He has shown me what it means to be dedicated, empathetic and professional,” Program Coordinator Assistant Kimberley Firkins said. “Ned’s the perfect example of what it means to partner, help, and connect, not only with our families and providers but also within the organization, with his teams, and his co-workers.”

Learn more about Ned and his exceptional service to families in this video below:

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

The other 2023 nominees are:

• Elizabeth “Liz” Bailey, Home Care Enrollment Manager, Lombard Regional Office
• Lisa Garbe, Assistant Regional Manager. Marion and Olney Regional Offices
• Mayra Rubio, Bilingual Care Coordinator, Mokena Regional Office
• Amanda Simhauser, Communications Manager, Central Administrative Office in Springfield

A big congratulations to Ned and all the 2023 nominees! We are grateful for your service and commitment to Illinois families!

The DSCC Family Portal can help you easily communicate with your care coordination team and find the information you need

It’s important for our Division of Specialized Care for Children (DSCC) participant families to be active partners in their child’s care. We’re excited to introduce a new way for you to easily share information and communicate with your DSCC care coordination team.

Our new DSCC Family Portal aims to help you find the records you need all in one convenient place.

You can use the Family Portal to:

• Send messages
• Sign documents
• View important letters
• See a list of providers and much more

To access the portal, visit https://go.uic.edu/DSCCFamilyPortal.

To log in to the Family Portal for the first time, you will need:

• Your email address
• Your DSCC participant’s name or DSCC ID number
• A unique password

We know learning a new application can seem tough. We have tip sheets and videos to help you get started and feel comfortable using the portal. You can find these resources on our website at https://dscc.uic.edu/dscc-family-portal/.

If you have trouble accessing the Family Portal or need other support, please email dsccexternalhelp@uic.edu. A designated DSCC staff person will help you as soon as possible.

We are always looking for ways to improve our services and strengthen our support for families.

We hope the Family Portal will be an easy and convenient way for you to connect with your care coordination team and the resources you need.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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).

More than 200 DSCC participant families have enrolled in the study as of June 2023.

“I am thankful for the B.E.S.T. program,” one parent participant shared. “It’s helping (my daughter) voice feelings. I hope the program continues for her.”

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!