Tell Us How Illinois Can Better Support Children With Medical Complexity
!["We Want to Hear From You" in a text bubble with DSCC logo](https://dscc.uic.edu/wp-content/uploads/2020/02/Survey-Graphic-2.png)
Federal funds are available to help enhance, expand and strengthen home and community-based supports for children with complex medical needs
We’re excited to announce a unique opportunity for you to share feedback to help Illinois improve its support and services for children and youth with complex medical needs.
In March, President Joe Biden signed the American Rescue Plan Act of 2021 in response to the COVID-19 pandemic. Under this act, Illinois can qualify for a temporary 10 percent increase in federal funding for home and community-based services (HCBS). This 10 percent increase is called the Federal Medical Assistance Percentage or FMAP.
Illinois must use the FMAP funds to enhance, expand or strengthen HCBS beyond what is available under the Medicaid program as of April 1, 2021.
HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide additional funds to help support children and youth in the Home Care Program and their caregivers.
Illinois must submit its ideas for how to use FMAP funds to the federal government by June 12.
We’ve put together a brief overview of the FMAP requirements. The video features Molly Hofmann, our Director of Care Coordination, Systems Development and Education, and Stephanie Leach, our Assistant Director of Operations for Home Care for our southern offices and our Illinois Department of Healthcare and Family Services (HFS) Liaison.
Please watch their short presentation below –
We’d like to know what you think about the Division of Specialized Care for Children’s (DSCC) suggestions. What concerns do you have about them? What additional ideas do you have?
Please send your thoughts to dscc@uic.edu with the subject of “FMAP Feedback” by June 6, 2021.
For more information about the available FMAP funds, you can review the public notice on the HFS website. The notice includes HFS’s suggested recommendations for improving HCBS services.
HFS also has a form to collect feedback from families, caregivers and other stakeholders. You can download the HFS feedback form and email it to HFS.HCBSWaiver@illinois.gov no later than June 4, 2021.
A note that DSCC’s and HFS’s ideas for improvement are simply suggestions at this time.
Former DSCC Employee Wins Lifetime Achievement Award
![headshot of Ralph Schubert](https://dscc.uic.edu/wp-content/uploads/2021/03/Ralph-S-DRAFT-57-for-web.jpg)
Ralph Schubert honored for 40 years helping Illinois children and families
Ralph Schubert has received the Title V Lifetime Achievement Award from the federal Maternal and Child Health Bureau.
Ralph is the former Associate Director for Title V Programs at the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). He retired in August 2020.
The award recognizes outstanding contributions to the field of maternal and child health over time.
“He’s been a tireless and lifelong advocate for children,” said Dr. Michael Warren, the Associate Administrator of the Maternal and Child Health Bureau.
Ralph has 40 years of public health experience in various local, state and federal positions in Illinois.
“I never expected to be considered for this award let alone selected to receive it,” Ralph said. “I am deeply honored.”
Before joining DSCC, Ralph spent a combined 30 years at the Illinois Department of Public Health and Illinois Department of Human Services.
His leadership positions at these agencies included Manager of Maternal and Child Health Grants and Program Development Unit. Ralph also served as the acting Associate Director for Family Health and the Associate Director for Program Planning and Development, where he was responsible for developing and implementing a new community health and prevention program.
He later became the Director of Public Policy for the Illinois Public Health Association before joining DSCC in August 2016.
Ralph said a major highlight of his career was helping lead the Healthy Families Illinois initiative.
Healthy Families Illinois is a home visitation program to support new and expectant parents and improve children’s safety. He collaborated with a group of 75 advocates, service provides and others to design, implement and expand this program.
Ralph’s work with Healthy Families Illinois earned him the Friend of Children Award from Prevent Child Abuse Illinois and a Leadership Award from Voices for Illinois Children.
Ralph said he is grateful for the people he has worked with for supporting him and challenging him to be better throughout his career.
Now that he is retired, Ralph is pursuing his third master’s degree and plans to do mission work in Africa.
Congratulations, Ralph, and thank you for your service!
Sports for Kids Foundation Helps DSCC Families
![Sports for Kids Foundation logo](https://dscc.uic.edu/wp-content/uploads/2021/02/Sport-for-Kids-Foundation-for-web.png)
Foundation provided financial gifts to support the needs of eight DSCC participants throughout 2020.
The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) works with many community organizations and nonprofits to help children with special healthcare needs and their families.
Late in 2019, the Sports for Kids Foundation offered to provide funding to some of our participant families in need.
After working with our Chicago Regional Office staff, Sports for Kids supported the needs of eight DSCC participants and their families during 2020.
“We are extremely grateful that Sports for Kids contacted us and offered their foundation’s support to our participant families,” DSCC Executive Director Thomas Jerkovitz said. “This financial support helped improve the quality of life for each child and family who received it.”
The Sports for Kids Foundation’s financial contributions to DSCC participants included:
- Funds to help a family pay their share of the balance for a new carbon fiber prosthesis for their child. The child’s previous prosthesis was heavy, bulky and not a good fit for the child, causing pain and discomfort. The new prosthesis will help the child take part in sports and other physical activities she enjoys.
- Emergency funds to cover a participant family’s urgent need for over-the-counter medication, clothing, groceries and transportation. The parent was living in temporary housing and unable to work as she cared for her child’s rare progressive genetic disorder.
“During these unprecedented times, we are heartened to know that such caring organizations exist,” Jerkovitz said.
The Sports for Kids Foundation began in 1989 in Omaha, NE, according to Al Vacanti, co-founder and auction coordinator.
Before then Vacanti practiced law in Omaha and was an aspiring sports agent for professional athletes.
“I had modest success at it and in the process, I made some contacts, mostly in the NFL and pro football,” he said.
Those contacts led him to his involvement in a softball tournament that benefited March of Dimes in Omaha. That tournament led to talk about starting a sports memorabilia auction to create a general fund for children with special healthcare needs.
The Sports for Kids Foundation was born and began holding annual auctions of sports memorabilia. Proceeds from the events go to support Sports for Kids’ mission to assist children with special needs and their families.
Foundation members either hear directly from families in need or seek organizations that serve children with special healthcare needs.
In addition to helping children in Nebraska and the Chicagoland area, Sports for Kids provides financial gifts to children throughout the United States.
The foundation’s funds have helped support a variety of needs for eligible families, including:
- Paying for or supplementing the cost of a piece of equipment, such as an adaptive bicycle
- Covering the costs for a family in a rural community to travel to a city for their child’s treatment
- Paying for a special camp or recreation program
“I would imagine we’ve given close to 1,000 financial gifts over 30 years,” Vacanti said. “There has to be a financial need. And there can be insurance there, but there are many situations where families still have large out-of-pocket expenses (for their child’s needs).”
Sports for Kids was able to hold its 30th auction shortly before the COVID-19 pandemic shutdown occurred.
Vacanti said the foundation is hoping to hold its next auction sometime later in 2021 and continue its tradition of providing much-needed funds for children with special needs.
Shopping Spree Brightens DSCC Toddler’s Holiday
![Shyterria Jordan pushes a decorated shopping cart with her son T'Aubrae and his big brother inside during a shopping spree](https://dscc.uic.edu/wp-content/uploads/2020/12/TAubrae-Make-A-Wish-2-e1608581616345.jpg)
Make-A-Wish organizes a car parade, limo ride and shopping spree for 3-year-old T’Aubrae
The year 2020 has been especially challenging for Shyterria Jordan and her children.
Her 3-year-old son, T’Aubrae, has complex medical needs. He was in the hospital for more than a month earlier this year. T’Aubrae then stayed at the transitional care center Almost Home Kids for another three months.
Safety precautions for the COVID-19 pandemic meant T’Aubrae’s two older siblings couldn’t visit him while he was away from home.
“He loves his brother and sister to death,” Shyterria said. “To go weeks or months without seeing them made it really hard. It was definitely the most difficult thing I’ve dealt with.”
The news that Make-A-Wish Illinois would grant T’Aubrae’s wish brought much-needed joy for the whole family.
On Dec. 5, the foundation partnered with the Peoria community to organize a parade with local firefighters, police, classic cars and hot rods in front of the family’s home. The family then got to ride in a limo for a shopping spree at various stores. The trip also included a stop at a local park and a special visit with Santa.
![3-year-old T'Aubrae smiles as he watches a special community parade in his honor](https://dscc.uic.edu/wp-content/uploads/2020/12/TAubrae-Make-A-Wish.jpg)
Local media covered the special day and T’Aubrae’s excitement.
“I never thought we would experience something like this,” Shyterria said. “It was a once-in-a-lifetime experience and the kids were so excited.”
T’Aubrae was born with short bowel syndrome, meaning his body doesn’t have enough small intestine to absorb enough nutrients from the foods he eats.
He has a feeding tube and receives in-home nursing care. T’Aubrae has been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for more than two years.
His condition has resulted in multiple surgeries and hospitalizations.
“He’s doing great right now. We’re just trying to keep him out of the hospital for as long as we can,” Shyterria said “He’s just a very outgoing kid and full of energy. Overall, he’s a wonderful kid and he’s a very strong boy…. I’ve learned a lot from him.”
She said T’Aubrae enjoyed the noise of the sirens during his special parade and was delighted to go shopping. He picked out toys and items for his bedroom. His brother and sister also got to pick out two toys each for themselves.
“I know he’s going to have a great Christmas,” Shyterria said.
T’Aubrae loves cars, so Make-A-Wish also gave the family tickets for the Peoria Speedway and racecar t-shirts.
“It was a very, very great experience. (Make-A-Wish is) a blessing to this world to do something like that,” Shyterria said. “It’s a once-in-a-lifetime experience and something that he will never forget.”
You can see pictures and videos from T’Aubrae’s special wish day in the news stories below:
Training Supervisor Wins DSCC’s Merit Award
![2020 Award of Merit Winner Tiffany Kalka](https://dscc.uic.edu/wp-content/uploads/2020/12/Tiffany-Kalka-photo-cropped.jpg)
Tiffany Kalka honored for outstanding service to children with special healthcare needs.
Tiffany Kalka is the 2020 recipient of the Award of Merit from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).
The award recognizes exceptional employees for outstanding dedication and service to children with special healthcare needs.
Tiffany is DSCC’s Training Supervisor and based in our Springfield Office.
She works with staff across the state to make sure they have the knowledge, tools and support necessary to provide the best service possible for children and families in our program. Tiffany wears many hats, coordinating training events and learning requirements for staff and their related technology needs.
DSCC moved to a new electronic care coordination system last spring. This new system helps our care coordination teams work more efficiently and effectively as they partner with families. Tiffany helped spearhead the system’s planning, implementation and ongoing support for employees.
She took on this huge volume of work while also fulfilling her training responsibilities with exceptional dedication and quality.
“Tiffany’s talent and knowledge have helped us develop our care coordination system that better meets our participants and staff’s needs,” said DSCC Executive Director Thomas Jerkovitz. “Tiffany’s efforts have empowered our staff to be better champions for the children and families we serve.”
Tiffany joined DSCC 19 years ago. She says she is honored and grateful to be nominated and selected for this award.
“The most rewarding part of my job is being able to help my peers navigate our electronic care coordination system,” she said. “By helping them, I know that I am helping the families DSCC serves.”
DSCC staff nominated a total of 10 of their colleagues for this year’s Award of Merit. As the winner, Kalka receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.
The other 2020 nominees are
- Carla Jo “CJ” Chandler, IT Technical Associate, Central Administrative Office in Springfield
- Darcy Contri, Program Transition Specialist, Central Administrative Office in Springfield
- Kimberley Firkins, Program Coordinator Assistant, Lombard Regional Office
- Connie Harriss, Program Coordinator Assistant, Olney Regional Office
- Tami Peleckis, Customer Service Assistant, Mokena Regional Office
- Summer Puckett, Care Coordinator, Champaign Regional Office
- Jamie Renth, Manager of Home Care Region 3, St. Clair Regional Office
- Gabrielle “Gab” Schmitt, Home Care Enrollment Manager, Champaign Regional Office
- Amanda Simhauser, Communications Manager, Central Administrative Office in Springfield
Congratulations, Tiffany! And a big thank you to all the nominees for their excellence on behalf of our children and families!
Strategies to Empower Family Caregivers
![A mom holds her young daughter with complex medical needs and smiles at her](https://dscc.uic.edu/wp-content/uploads/2020/11/Payton-and-Mom-cropped-for-web.jpg)
DSCC provides support and resources to strengthen caregivers’ ability to care for themselves and children with special healthcare needs.
November is National Family Caregivers Month. It’s an opportunity to celebrate all of you who selflessly and continuously care for your children and loved ones with special healthcare needs.
At the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), we recognize the huge role you play in your child’s overall health and wellbeing. We value our partnership with parents and caregivers to help set goals for your child, identify strengths and make plans to achieve what is important to your family.
We also understand the importance of caregiver health and providing you the right support and resources. DSCC is dedicated to empowering caregivers and strengthening your ability to provide care for someone else.
We recognize how you are there every day, managing multiple care needs and navigating complex healthcare systems, insurance systems and more. Our priority is to help strengthen your knowledge, reduce your stress and help you feel more confident and organized in your child’s care.
Here are three significant ways we aim to empower caregivers:
- Partner with you to identify what you, your child and your family need. As the parent or caregiver, you know your family’s unique needs and values better than anyone. We listen to these needs and partner with you to identify your child and family’s goals and how to accomplish them. If you are not enrolled in our program or need help knowing how to identify your needs, this quick self-assessment tool can help.
- Help you brainstorm and connect with others. Conversations around health allow all of us to get creative, see things differently and develop new ways of doing things. These creative ways can save you time, energy or allow for improved interactions. Some connections in the community are your primary health or behavioral treatment specialist, other DSCC parents or a community parent support group.
- Connect you to the latest research and information. As growing research helps us better understand physical and mental health, it can also show new techniques, interventions and treatment options. Think about how you learn best and reach out to trusted sources. Our staff can help you find the best sources of information. We are also experts on local resources and supports available in your community.
The physical and emotional demands of caring for a child with special healthcare needs are 24/7. Though we can’t take away all the worries and emotions, we can provide a consistent helping hand to support you through your child’s journey with a medical condition
To learn more about our care coordination, visit our How We Help page. You can also contact your local DSCC Regional Office or call us at (800) 322-3722.
Our online Resource Directory also includes resources and tips for caregivers.
Featured resources include:
- Caregiver Action Network’s Family Caregiver Toolbox
- The National Alliance on Mental Illness’ Self-Care for Caregivers
- Family Caregiver Mental Health and COVID-19
- National Caregivers Library
- Preparations for Caregivers During COVID-19 and Beyond
- Emotional Well-Being Toolkit: Resources for Children, Families and Caregivers
- National Respite Locator
- Easterseals Respite Services for People With Disabilities
- Apps for Caregivers
- Self-Care and Emotional Wellness Apps
- Coloring Pages for Caregivers
DSCC Participant Opens Community Pet Pantry
![Emma Wiker and her sister, Ellen, stand on either side of a community pet pantry they opened in Athens, Ill.](https://dscc.uic.edu/wp-content/uploads/2020/11/Emma-and-Ellen-Wiker-Pet-Pantry-1-cropped-for-web.jpg)
Emma Wiker’s community effort helps local pets stay fed and cared for during the COVID-19 pandemic.
For six years, Emma Wiker has run the Animal Abusive Protection Program to raise money for abused or abandoned animals in Menard County.
The 15-year-old sells buttons and key chains and organizes a hugely popular annual dog walk in her hometown of Athens to benefit the program.
![Emma Wiker and her sister, Ellen, stand beside the pet pantry they opened in Athens, Ill.](https://dscc.uic.edu/wp-content/uploads/2020/11/Emma-and-Ellen-Wiker-Pet-Pantry-3-225x300.jpg)
For the 2020 dog walk, Emma decided to use the proceeds to open the Animal Abusive Protection Program Pet Pantry over the summer. The pantry ensures that no local animal will go hungry due to the COVID-19 pandemic.
Emma has been a participant of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for the last four years. Her mother, Violet, is DSCC’s Family Liaison.
The Wiker family says Emma grew up with a determined spirit and desire to help others. Emma was inspired to start the dog walk in 2014 after seeing a disturbing image of an abused dog that went viral on social media.
Emma handles all the responsibilities of planning and coordinating the dog walk herself and has become a local celebrity. For this year’s walk on July 26, Emma asked her younger sister, Ellen, age 12, to partner with her.
The sisters raised a grand total of $1,978 from this year’s event.
Emma and Ellen worked with community member Jim Roles, who designed, built and donated the pantry.
![The pet pantry is filled with food, treats and toys for pets.](https://dscc.uic.edu/wp-content/uploads/2020/11/Emma-and-Ellen-Wiker-Pet-Pantry-2-225x300.jpg)
The pet pantry is stocked with food, treats and toys. It is set up for pet owners to take what they need and for others to leave donations as they are able.
The funds raised during the dog walk have helped fill the pantry when community donations run low. Demand at the pantry has been high, with Emma and Ellen stocking the shelves multiple times.
The pet pantry is located in Athens Community Park.
Kudos to Emma and Ellen for helping to fill a genuine need in their community!
Social Connection Helps Physical and Mental Health
![Illustration of people figures hold hands and form a chain around the globe](https://dscc.uic.edu/wp-content/uploads/2020/10/World-Mental-Health-Day-e1602254543390.jpg)
To celebrate World Mental Health Day, DSCC promotes the importance of social connection and ways to support it.
The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is committed to strengthening families and building healthy communities.
We encourage our participant families, providers, community partners and all Illinois residents to join us in recognizing World Mental Health Day on Oct. 10.
To celebrate, DSCC Quality Improvement Specialist Diane Becker shares the latest research on how social connection affects both our physical and mental health:
We know that for all of us to grow, develop and thrive in Illinois, it requires us to work together as a community to remain safe and support each other.
This support includes creating opportunities for positive social connections and providing information and access to mental health support.
Positive social connections allow us to feel valued. They also provide opportunities to work together to solve problems.
Growing research shows more physical and mental health benefits to creating and maintaining these relationships. Positive connections create chemical changes that affect the immune system, nervous system, glucose levels and blood pressure.
The American Psychological Association’s article, Life-saving Relationships, provides more evidence of emotional connections and health.
The World Health Organization (WHO) is leading the conversation about mental health in positive terms and showing its connection to overall health and wellbeing. Social and environmental factors known to affect physical and mental health include:
* Food and housing security
* Safety in the home, school, work and community
* Access to care
* Connection to others
Mental health services are available throughout Illinois to offer connection and supports, even during this time of social distancing.
DSCC staff can also help you find available services and resources in your area to meet your unique needs.
Services are a safe and consistent place to move forward in adjustment or recovery to any setback, trauma, grief or loss that you may be experiencing.
Supports can also benefit anyone seeking a healthier way to work through difficult or complex emotions, to challenge negative thinking patterns or to learn new techniques.
The National Institute of Mental Health offers good information on a variety of mental health resources and assistance that are availbale if you think you may need more support.
Access to care remains DSCC’s priority.
Our team members are available to connect you with other families for peer-to-peer support. We can also share additional health supports and services in the community.
To learn more, please reach out to your local DSCC Regional Office or call us at (800) 322-3722.
You can also visit our online Resource Directory for additional support.
Featured resources include:
- Mental Health Resources Handout
- National Alliance on Mental Illness (NAMI)
- Mental Health America of Illinois
- Illinois Mental Health Collaborative for Access and Choice
- National Suicide Prevention Lifeline
- Coping With Stress
- Call4Calm Text Line
- How Teenagers Can Protect Their Mental Health During COVID-19
- Mental Health First Aid USA COVID-19 Resources
- Resources for Supporting Children’s Emotional Well-Being During the COVID-19 Pandemic
- Self-Care Inventory Tool
- The National Federation of Families for Children’s Mental Health’s COVID-19 Resources for Parents, Families and Youth
- How to Help Children Build Resilience in Uncertain Times
- Emotional Well-Being Toolkit: Resources for Children, Families and Caregivers
- Expressing, Coping, Reframing: Addressing the Mental Health of ‘Quaranteens’ in the Time of COVID-19
- PTSD During a Pandemic for Parents with Medically Fragile Children
- Young Children at Home During the COVID-19 Outbreak: The Importance of Self-Care
In the News: DSCC Participant Wins Adaptive Bike
![](https://dscc.uic.edu/wp-content/uploads/2020/10/Dayna-Cuervo-Photo-cropped-for-web.jpg)
Project Mobility awards adaptive bikes to seven youth with mobility issues
Six-year-old-Dayna loves to keep up with her older brothers.
But keeping up became a lot harder when biking became a favorite pastime during the COVID-19 stay-at-home order.
Dayna was born with spina bifida, a birth defect in which the spinal cord fails to develop or close properly. She has no feeling in her legs from the knee down, so a traditional bicycle is too difficult to maneuver.
To give Dayna greater independence, her family entered a contest to raise money for a new adaptive bike.
Thanks to the Bike Rack’s Project Mobility program, Dayna and six other children are receiving specially configured bicycles at no cost.
Project Mobility is a nonprofit organization based in St. Charles, Ill. It offers recreational events using specialized bicycles for people with disabilities. The organization also does adaptive bike giveaways.
Adaptive bikes can cost anywhere from $1,000 to $5,000.
“We’ve known about Project Mobility for a few years. We go to the Ability Expo every year and they are well-known in the spina bifida community,” Dayna’s mother, Kimberly Dorencz-Cuervo said. “When we saw they were starting up an adaptive bike giveaway for this year, we decided to enroll Dayna.”
Dayna is a participant in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).
She was one of seven children with mobility issues who entered the Adaptive Bike Giveaway – Everybody Rides 2020 edition.
“One way that we get to go out as a family and do things is by bike riding, and it really brings normalcy to our days,” Kimberly told Chicago WGN 9 News. The news station featured the contest and Dayna in a recent news story.
“Dayna can’t participate in it, so having this bike would just be able to make her feel included, and inclusivity is so important to us. It would be a blessing,” Kimberly added.
Typically, the contest awards a bike to the youth who receives the most shares and likes on Facebook.
But this year’s contest went viral. Thanks to the generosity of donors and sponsors, all seven children will receive their own adaptive bike. Chicago WGN 9 covered the great news in a follow-up story.
“We thought that was awesome,” Kimberly said. “Dayna is so excited. She can’t wait.”
Kimberly said the bike shop is currently customizing Dayna’s bike, so she expects it will be ready to go for next spring.
“Having the adaptive bike will allow her to participate with the family in bike riding and doing all of the things that a typical child does,” she said. “It will also help her in making friends because many of the kids in our neighborhood ride bikes. I think it’s going to help her with the social aspect, too.”
Congratulations to Dayna and all the giveaway winners!
For more information on Project Mobility, visit www.projectmobility.org/.
DSCC Staffing Interruption Update for Families
Note: This post was updated on Sept. 24, 2020
All staff have returned to work at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).
The University has reached an agreement with SEIU Local 73, ending the strike on Sept. 23.
We are pleased to welcome all staff back to the office and look forward to working together to help your children and families reach their full potential.
Thank you for your understanding during this time.
As always, if you have an urgent need or concerns, please contact your Care Coordinator directly or reach out to your local DSCC regional office.
You may also call our main telephone number at (800) 322-3722 or email dscc@uic.edu.