Jessica Wolff teamed up with her therapist friend to create The Nest Postpartum to provide resources for NICU families at Carle Hospital

As the mother of twin daughters born extremely premature, Jessica Wolff is intimately familiar with the stress and heartache of having a baby in the neonatal intensive care unit (NICU).

One of her twin daughters was stillborn. The other, Lily, was born with complex medical needs and spent eight months in the NICU at Carle Hospital in Champaign.

“Often, I was the only parent there (in the NICU) and there were 20 to 30 other babies there,” Jessica recalled. “There are so many barriers that families face while in the NICU, whether it’s transportation to be able to be there for their baby every day or access to meals for the rest of the family. (NICU parents) often have to leave the NICU early to go home for their other kids and make dinner and make sure everyone is fed.”

Jessica, who is a social worker, talked about these experiences with her good friend Paige Raab, who is a pediatric physical therapist. Paige works closely with many NICU families. She also had two traumatic births herself that resulted in NICU stays.

Both women talked about the disparities they saw in the NICU and decided to do something to help. Paige proposed starting a nonprofit foundation, and The Nest Postpartum was born.

“There is definitely a hole we noticed in community services (for NICU families). Paige came to me with the idea, and we built it from the ground-up,” Jessica said.

The Nest Postpartum aims to provide services such as transportation, lodging, prepared meals, care coordinator check-ins and links to other community support programs for families staying in Carle’s NICU.

“We are hoping to provide transportation resources, whether public transportation, gas gift cards or access to rideshare programs and then we’re going to provide families with premade ready-to-cook or ready-to-eat meals. And if the (Carle Auxiliary) Guest House is unable to accommodate a family, we’ll provide hotel stays to bridge that gap,” Jessica said.

The Nest Postpartum also will provide care coordinators who are NICU moms themselves and/or have a healthcare background. These care coordinators will check in weekly with Carle NICU families to connect them with resources or provide emotional support.

Jessica and Paige started fundraising for The Nest Postpartum over the summer. The nonprofit will officially launch on Oct. 4.

“We’ve had amazing, overwhelming community support,” Jessica said. “The NICU staff themselves are super excited and the social workers we’re working with through the hospital are excited to have these resources available.”

The Nest Postpartum will initially only take referrals from Carle social workers. Jessica said interested families in need can reach out to their hospital social worker or tell their bedside nurse.

Jessica said she is thrilled to provide a valuable service to families experiencing similar struggles as her own.

Her daughter, Lily, now 3, came home relying on a ventilator to breathe. She has been enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) since she was an infant. She has received in-home nursing services through the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS).

“We really enjoyed having the support of the Home Care Program. Coordinating the medical benefits and medical supplies and nursing was really a full-time job while keeping her alive was a full-time job for me,” Jessica said. “DSCC has been really important in making sure that Lily is home and successful.”

Jessica said she hopes The Nest Postpartum will provide other NICU parents the connection and camaraderie that’s been so beneficial for her.

“Having the support and the community of other parents who have lived this has been absolutely invaluable. I found myself for eight months only being able to focus on Lily and her survival. Coming home from the NICU was equally overwhelming because of her intense medical needs. We ran an ICU out of our house for over a year until she was able to come off the vent a bit,” Jessica said.

“To find these other mothers who walked the same path has really been life-saving for us.”

To learn more about The Nest Postpartum, visit https://www.thenestpostpartum.org/.

You can also watch local media coverage about the non-profit:

• Two NICU moms launch nonprofit group, The Nest Postpartum, to help other NICU families in need
• NICU Moms form non-profit, The Nest, to help other NICU Families at Carle

Families have until Oct. 2 to provide feedback on several updates to the Home and Community-Based Services Waiver for children who are medically fragile and technology-dependent

The state invites families to provide feedback on several proposed amendments to the Home and Community-Based Services waiver for children who are medically fragile and technology-dependent (MFTD).

The Illinois Department of Healthcare and Family Services (HFS) operates the MFTD waiver. Many families in the Home Care Program have children who receive services through the MFTD waiver.

HFS has announced the following proposed amendments:

• Increase the Placement Maintenance Counseling rate from $50 to $86.28 to be more consistent with the Illinois Department of Human Services’ rates for counseling services.
  
• Update the cost projections for In-Home Shift Nursing and Certified Nursing Assistant for the waiver’s fifth year to account for recent rate increases and individuals over age 21 continuing to receive waiver services.
  
• Add Electrical Assessments to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Add Generators to the current service definition under “Environmental Accessibility Adaptation” as an available option.
  
• Lower the required number of bids for vehicle modifications from three to two.

HFS now invites the public to comment on these proposed amendments. (You can read the public comment notice on the HFS website.)

To review the full waiver amendments, you can:

• Download and read and/or print a hard copy of the amendments from the HFS website.
• Call (217) 524-4148 to receive a hard copy.
• Review copies at Healthcare and Family Services offices at :
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

The deadline to provide feedback is Oct. 2.

You can submit feedback in two ways:

• Via email at 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

HFS and the University of Illinois Chicago’s Division of Specialized Care for Children will review the comments and respond to them.

We will then submit comments to the federal Centers for Medicare and Medicaid Services as part of the amendment approval process.

Illinois awaits approval to use FMAP funds for improving care for our Home Care Program participants

Illinois has developed a plan to use increased federal funding to improve support and services for children and youth with complex medical needs.

This plan incorporates valuable feedback from our participants, stakeholders and staff members at the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

The extra funds are part of the American Rescue Plan Act of 2021. The act gives Illinois 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.

HCBS includes the waiver for children who are medically fragile and technology-dependent (MFTD). Therefore, the FMAP can provide extra funds to help support children and youth in the Home Care Program and their caregivers. FMAP improvements will also affect individuals who receive in-home, shift-based nursing as a non-waiver benefit.

In late May, DSCC asked our participant families, staff and community partners for input on how to use the FMAP funds. We also sought feedback on DSCC’s ideas for improving HCBS for Home Care participants.

We shared the input we received with the Illinois Department of Healthcare and Family Services (HFS). We then worked with HFS to develop Illinois’ proposal for using the FMAP funds.

Ideas included in the proposal are:

1. Expand consumer direction (the ability for consumers to make choices about the services they receive) to allow unlicensed family caregivers to be paid caregivers. DSCC would then work to develop health and safety monitoring, assist with training and more. This change could provide caregiver relief to a large number of Home Care families.
   
2. Develop a nursing portal where open shifts could be posted by nursing agencies and families. This portal would be visible to home nurses and families. The intent is to try to improve nursing coverage for open shifts across the state.
   
3. Improve training and access to training to help improve the quality of nursing care in the home. This initiative would include developing training that builds on and complements existing training for caregivers in the home.
   
4. Increase the in-home respite nursing rates to match the rates from the 2019 nursing rate increase.
   
5. Increase the child-specific training rates to match the rates from the 2019 nursing rate increase.

HFS submitted Illinois’ proposal to the federal Centers for Medicare and Medicaid Services in July. We are now awaiting its approval and planning for the necessary next steps.

It is important to note that though the FMAP funding increase is temporary, we hope to make many of these changes permanent. We are discussing how to handle any relevant long-term costs with HFS.

We are excited about this opportunity to improve care for our Home Care Program participants.

Thank you to everyone who took the time to share their ideas and feedback with us.

We will continue to share updates on the status of Illinois’ proposal as they become available.

Haley Shropshire of the Peoria Regional Office is biking 250 miles as part of nationwide Stop Soldier Suicide Cycling Challenge in July

Four months ago, Haley Shropshire, a Division of Specialized Care for Children (DSCC) Care Coordinator from the Peoria Regional Office, got a new bike.  She hadn’t owned a bike since she was 10. Now, she’s part of the Stop Soldier Suicide Nationwide 250 Mile Cycling Challenge during July.

The challenge is raising awareness and funds to end soldier suicide.

“I’ve grown up surrounded by family members and other individuals who have served in the military. My father served seven years in the Army infantry and although he didn’t die of suicide, it’s important that I show my support and respect for what he did to serve our country,” explained Haley. “I don’t usually do Facebook fundraisers, but I love this cause and just had to go for it!”

According to the Stop Soldier Suicide website, veterans are at a 50 percent higher risk of suicide than their peers who have not served. Stop Soldier Suicide’s mission is to reduce the military suicide rate by 40 percent by 2030.

Funds raised through their Facebook challenges provide direct support to service members and veterans at risk for suicide.

Haley cares deeply about this cause and is hoping others will visit her Facebook page for more information, to check on her progress or make a donation by Aug. 7.

“Riding my bike is just so freeing! I’ve really been encouraged by the great comments and support,” Haley said “I set up my page in June and was surprised when I passed my goal before I started riding. I bumped up my goal and am really hoping I can pass it again. It’s all been so amazing!”

Haley is fast approaching her current fundraising goal of $500 and has logged more than 143 miles.

“I’m riding because I want to help and I want service members who are struggling to know there’s help,” Haley said. “I would be thrilled if my challenge could raise $1,000. That would help so many get the help they need.” 

Haley also encourages any interested DSCC staff members to ride or join her on Facebook.

“I may be riding my bike alone, but I’m not going solo. It’s been incredible,” she said.

If you know a struggling service member, veteran or military family member, Stop Soldier Suicide can help. If you’re a veteran or service member in crisis, please call (844) 317-1136.

DSCC aims to help families strengthen their support to promote young people’s health, safety and wellbeing.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) wants to help Illinois families strengthen their support for LGBTQ+ youth with special healthcare needs and disabilities.

June is Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) Pride Month. There are approximately 5 million LGBTQ+ individuals with disabilities in the United States, according to the nonprofit RespectAbility.

Our DSCC team can provide resources to help our participant families, healthcare providers and community partners understand and support LGBTQ+ youth and their needs.

Research shows that family involvement in an LGBTQ+ youth’s life, particularly in the first two years of coming out, improves their overall safety, health and long-term well-being.

Teaching children about self-awareness and self-care at a young age can lead to better health and safety as a teenager. Helping a child establish boundaries is also linked to better teen health and safety.

Former DSCC Quality Specialist Diane Becker has studied research in these areas. Diane is a nationally certified juvenile treatment specialist and a licensed clinical social worker. She has worked with families and professionals in the social work and counseling fields for 30-plus years.

Diane appeared on the “Just Breathe: Parenting Your LGBTQ Teen” podcast last year to talk about mental health, boundaries and self-care for both LGBTQ+ young adults and parents.

She shared the latest research and discussed the importance of connectedness, family and health and safety.

You can listen to Diane’s two-part interview at the links below –

• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part One
• What Are These Boundaries You Speak Of? An Interview with Diane Becker Part Two

We also encourage Illinois families of LGBTQ+ youth with special healthcare needs to contact us with their questions and concerns. You can call us at (800) 322-3722 or email us at dscc@uic.edu to learn more about available resources and support.

You can also visit our online Resource Directory.

Featured resources that can help support LGBTQ+ youth and their family/caregivers include:

National and Statewide Crisis Hotlines

• Find a Helpline
• National Suicide Prevention Lifeline
• National Domestic Violence Hotline
• The Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Helpline
• Illinois Crisis and Referral Entry Services (CARES) Line
• Illinois Warm Line
• National Runaway Safeline

Connections

• The Trevor Project
• Central Illinois LGBTQ+ Organizations
• Chicago and Illinois Mental Health Agencies and Organizations
• Strong Family Alliance
• PFLAG Parent Support and Resources
• “Expressing, Coping, Reframing: Addressing the Mental Health of ‘Quaranteens’ in the Time of COVID-19”
• It Gets Better Project

Find a Healthcare Provider

• University of Illinois Hospital & Clinics’ Inclusive Healthcare and Policies
• Gender Development Program at Ann & Robert H. Lurie Children’s Hospital of Chicago
• GLMA
• OutCare Provider Directory

Education

• Illinois State Board of Education LGBTQ Student and Family Resources
• Advocating for LGBTQ Students With Disabilities
• Know Your Rights: Students and LGBTQ Rights at School

Information

• Sexuality Resources for Individuals With Disabilities
• Mental Health Resources for LGBTQI Individuals
• Coming Out: Information for Parents of LGBTQ Teens
• RespectAbility’s Resources for LGBTQ+ Individuals With Disabilities

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.

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!  

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 30^th 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.

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.

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:

• 3-year-old Peoria boy has wish granted
• Peoria community comes together to grant 3-year-old’s wish
• In Peoria, a little boy gets a special day from Make-A-Wish Illinois

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!