DSCC staff provide an air conditioner to family of baby boy recovering from heart surgery in triple-digit temperatures.

Families enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) know their care coordination team is here to help. This help can include finding resources and developing a care plan to meet their unique needs and goals.

What our families may not realize, however, is how many DSCC staff work together behind the scenes to help our Care Coordinators find the best solutions for their child.

A powerful example of this group effort occurred after a 4-month-old baby boy underwent open heart surgery during a stretch of dangerously hot temperatures.

The boy was born with a heart condition shortly after his family moved to Illinois. After spending several weeks in the neonatal intensive care unit, he was able to go home in June and prepare for surgery later in the fall. However, his family soon learned that the surgery couldn’t wait. He underwent the procedure in July.

“It was a blow to them,” their Care Coordinator Robin Mahnken said. “But, they did the surgery and he went through it with flying colors.”

Shortly after the surgery, DSCC Administrative Services Coordinator Debbie Cole called the baby’s mother to check in. The mother reported that her son’s recovery was going well until an intense heat wave hit the area. The family didn’t have an air conditioner, and she was concerned how the extreme temperatures would affect him.

“Instead of saying, ‘I’m sorry to hear that,’ Debbie went, ‘Hmm, I wonder if we can help,’” Robin recalled.

Debbie went to Robin and the two began brainstorming ways to get an air-conditioning unit for the family’s home. Robin soon learned that durable medical (DM) equipment providers would not be able to help. She then went to her supervisors, who suggested an alternate way for DSCC to support the cost for an air conditioner.

Robin then got to work trying to find a non-medical, general merchandise retailer who would be able to bill DSCC for the cost of the air conditioner.

Robin contacted a big box retailer in town, which was willing to help. But, there were several administrative hurdles to overcome. She enlisted the help of two store managers, their general manager and a clerk to develop a plan for the store to accept a prior approval from DSCC to provide the air conditioner.

Robin then worked with DSCC Claims Services staff and the Provider Data Unit to enroll the retail store as a provider and work out a solution for payment. Claims Services Supervisor Michele Dillon even called into the office while on vacation to work with DSCC’s Business Office and Provider Data Unit to make sure a solution was reached quickly so the retailer could be paid as soon as possible and the family could have the much-needed air conditioner.

Once a payment solution was reached, another DSCC Care Coordinator went with Robin to pick up the air-conditioner, deliver it to the family’s home and install it for them.

“That is how a family with a 4-month-old baby who just underwent open heart surgery was able to get an air conditioner on a day when the heat index was 113 degrees at 2 p.m.,” Robin said. “This whole organization and this whole other business pulled together to help this one little person.”

We are extremely proud of our compassionate employees and their willingness to go the extra mile to provide the best outcomes for our families.

DSCC Regional Manager Mary Gruenich put it best – “In my 25-plus years at DSCC, I have witnessed  many outstanding examples of dedicated and caring staff going above and beyond to meet the needs of their families.  However, I don’t recall such an exemplary example of true care coordination that involved so many units within DSCC to meet the needs of a 4-month-old cardiac patient… completed  within 24 hours!”

2018 Illinois Miss Amazing Junior Teen Queen Izzy Gonzalez encourages others to share their talents and creativity.

Fifteen-year-old Izzy Gonzalez didn’t know what to expect when she decided to take part in her first Illinois Miss Amazing event in 2017.

Miss Amazing is a nationwide program that provides opportunities for girls and women with disabilities to share their abilities and ambitions.

Izzy attended the two-day Illinois event in Naperville that includes an interview, evening wear presentation and on-stage introduction.

She immediately fell in love with the experience and returned in 2018 to be crowned the Illinois Miss Amazing Junior Teen Queen.

Now, Izzy is ready to pass on her crown. She encourages other girls and young women with disabilities to consider Miss Amazing and other venues to share their talents and creativity with the world.

“It’s an amazing experience and if you’re kind of shy, it really helps you bring yourself out of your shell,” Izzy said.

Illinois Miss Amazing is currently accepting registrations for participants and volunteers for its 2019 event on April 5-6 at the Yellow Box in Naperville. The deadline to register is Feb. 15.

More information and the registration link is available on the Illinois Miss Amazing website.

Miss Amazing is for girls and women ages 5 and older who have an IEP, IPP, 504 plan, SSI or a physician’s records proving disability. The program aims to build self-confidence and life skills for participants as well as nurture a sisterhood of girls and women from different walks of life. The only cost to participate is five cans of food to be donated to the local community.

“It’s a fun way for them to shine,” Izzy’s mom, Susan, said.

Izzy was born with VACTERAL association, which is a group of birth defects that occurs together and affects many body systems. Izzy’s main issues are severe scoliosis as well as other orthopedic, urological, gastroenterological, neurological and respiratory issues.  She’s been a participant with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) since 2005.

Susan said Miss Amazing and other programs for youth with disabilities have helped her pinpoint her passion and become more confident.

Izzy says she first caught the theater bug through the Champaign-Urbana Theatre Company’s Penguin Project.  The Penguin Project is a national program that provides a supportive environment for children with disabilities to explore their creative talents in a community theater experience. Youth with disabilities are the artists and are joined on stage by “peer mentors” without disabilities.

Izzy joined the Penguin Project in 2016 and has done three musicals so far.

“From the end of the first show, I knew I just wanted to do this (acting),” Izzy said.

Izzy then learned about the Illinois Miss Amazing Program from one her fellow Penguin Project artists.

“I hadn’t done anything like that before,” she said of her first Miss Amazing event. “It’s hard to explain what it was like.”

Miss Amazing participants are asked to do a one-on-one interview, presentation in evening wear and a personal introduction. Izzy said the event also includes an optional talent showcase and a dance party on stage.

“They don’t judge you on this, it’s just for fun,” Izzy said, noting she chose to sing.

During her second Miss Amazing event, Izzy said she was shocked to be named junior queen.

“I was like, ‘Did they really just call my name,'” she said.

Susan said there were no words for seeing Izzy crowned on stage.

“My heart was so full,” she said.

Izzy says she’s looking forward to another fun Illinois Miss Amazing weekend and continuing to pursue her acting, singing and passion for theater.

She recently became involved with the Pens to Lens screenwriting competition. The Champaign Urbana Film Society runs the competition for  east-central Illinois K-12 students, who submit their written scripts for local filmmakers to produce as short films.

“For anyone who wants to share their creativity, I would say just do it. You never know what could happen,” Izzy said. “I didn’t know I would be able to write a screenplay, be an actress and win junior teen queen. You have to try.”

Newsletter for the Illinois Chapter of the American Academy of Pediatrics promotes DSCC’s efforts to help families.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is honored to be included in the latest edition of “Illinois Pediatrician.”

“Illinois Pediatrician” is the print and electronic newsletter for the Illinois Chapter of the American Academy of Pediatrics (ICAAP). The winter 2019 edition features an article by Molly Hofmann, DSCC’s Associate Director of Care Coordination.

The article explains how our staff uses a comprehensive assessment to help our care coordination teams develop a person-centered plan for each of our families.

The person-centered plan is guided by the participant and family’s needs, wants, dreams and desires. It includes their desired outcomes/goals, strengths and needs. It also outlines the steps to achieve these goals and the barriers and risk factors with plans to minimize them.

You can read the article at http://illinoisaap.org/wp-content/uploads/37-1_Winter_Newsletter_ICAAP1218_FINAL_REV-1-25-19.pdf.

The newsletter also includes great articles about the 14th annual Illinois Statewide Transition Conference. DSCC is one of the conference’s co-sponsors.

A big thank you to ICAAP for sharing our efforts to drive positive change in the lives of our participants and families!

Great teamwork helped Phalynn Graham celebrate her first Christmas outside the hospital.

Christmas 2018 was an unforgettable celebration for Phalynn Graham and her family.

It was the first holiday that the 4-year-old was able to spend at home, outside of hospital walls.

Up until this winter, Phalynn had spent her entire life at Ranken Jordan Pediatric Bridge Hospital near St. Louis.

Her homecoming was the result of persistence and teamwork between Ranken Jordan staff, the Graham family, Phalynn’s medical team and her care coordination team from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

Phalynn was born two months premature, and her lungs were not fully developed. She required constant use of a ventilator to breathe.

Phalynn was soon enrolled in the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

The Home Care Program partners with families to help them care for children that need shift nursing care at home. The program helps these children live at home with community supports.

Initially, Phalynn’s medical conditions were not stable enough for her to go home. Then, her family needed to find in-home nursing that met Phalynn’s healthcare needs and accommodated her mom, Shay’s, schedule. As KSDK News reported, Shay has lupus and undergoes dialysis three days a week.

Phalynn’s DSCC care coordination team at our St. Clair Regional Office worked to help the Graham family in any way possible. Their efforts included:

• Following up with available nursing agencies
• Following up monthly with the Grahams
• Participating in care conference meetings regarding Phalynn’s care needs
• Collaborating with Ranken Jordan staff
• Working with the medical equipment company to ensure Phalynn’s needs could be met at home

With in-home nursing in place, Phalynn was discharged from Ranken Jordan on Dec. 20, just in time for Christmas. KSDK News was there to cover her homecoming.

“It was great,” Shay said, noting they had spent four Christmases in the hospital. “It went well and she got real tired opening her gifts.”

Shay said she is thankful for all of the support her family has received, including from DSCC.

“Everybody has been amazing. Everyone that we’ve come into contact with has been good people to me and Phalynn,” she said.

Our St. Clair Home Care team is ecstatic that Phalynn and her family experienced their first Christmas at home together. They will continue to support the Grahams as they adjust to their new home life.

You can read more about Phalynn’s journey and watch the KSDK News story at https://www.ksdk.com/article/life/heartwarming/4-year-old-girl-goes-home-for-the-first-time-in-her-life/63-5131ec97-8c16-4b94-8a11-a0399822d410.

DSCC regional offices pitch in to provide gifts and Christmas magic to local families.

At the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC), we all share a common goal to help improve the lives of children with special healthcare needs and their families. This commitment often extends into the greater communities we serve and the organizations we partner with throughout the state.

This holiday season, the staff at several of our regional offices donated their time, resources and creativity to make sure local children in need have Christmas gifts and priceless memories. We’re proud of all of their hard work to be great community partners!

Mokena Regional Office

At our Mokena Regional Office, staff transformed their conference room into the North Pole to host their first “Pictures with Santa” event on Dec. 13.

The man in the red suit stopped by to visit with a small group of our participant families and pose for pictures.

One of the families shared it was the first time their children got to meet Santa. Previous attempts were either too difficult or impossible because their child was frequently in the hospital.

Both families went home with a donated toy and our calendar and coloring books.

Lombard Regional Office

Each year during the holidays, the building that houses our Lombard RO displays Christmas wreaths with tags attached. The tags have wishes on them from a boy or girl in the community whose family needs assistance.

Wishes range from makeup bags and books to items that they truly need, such as diapers and coats.

To help make these wishes come true, the Lombard Social Committee organized a silent auction on Nov. 28. The committee asked staff to donate any unused or gently-used items they had at home.

The auction raised $75, providing enough funds to fulfill the wishes for five children.

Rockford Regional Office

The Winnebago/Boone Foster Care Alliance is a collaboration of agencies that provide services to children in need in the community. Each year, the alliance organizes the “Adopt-An-Angel” project to provide Christmas gifts to local foster children and children involved with welfare services.

Our Rockford RO staff partnered with two of their building neighbors, the Illinois Department of Public Health and Illinois Guardianship Advocacy, to purchase gifts for these local “angels” this year.

Participating staff selected a tag for a foster child that included their name, age, gender and three gift ideas based on the child’s interests.

Rockford Regional Manager Shannon Jones said the original goal was to purchase gifts for 15 children. But, thanks to everyone’s generosity, the Rockford RO and their partners were able to provide gifts for 20.

“DSCC and the other state agencies within the RRO’s building have been participating in this program for over 10 years now, and it has been a great opportunity for everyone to come together to give back to the community we serve,” Shannon said.

Olney Regional Office

The Olney RO team recently had a “wrapping party” to benefit a special local family in need.

For the last several years, Olney staff have participated in the Adopt-a-Family program through the Good Samaritan of Richland County.

This year’s adopted family recently moved to the area for a fresh start. The single mom has three children, ages 2 to 12.

The program gave Olney staff a list of the family’s needs with clothing sizes, shoe sizes and so on.

The Olney team split up the shopping duties and brought in all of the purchased gifts for a wrapping party.

The gifts will be delivered to the family this week.

Despite everything on this mom’s plate, she won’t have to worry about giving her children a memorable Christmas morning.

 

DSCC staff join forces to honor caregivers during National Family Caregivers Month.

Staff at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) understand that caring for a child with special needs is one of the most demanding circumstances a family can face.

For National Family Caregivers Month in November, we wanted to do something special to support the amazing caregivers we partner with while also having fun working together as a team.

We invited our regional offices to plan a service project to benefit a group of caregivers in their community. Many of our staff jumped at the chance to participate.

Here’s a recap of how they helped –

Champaign Regional Office

Champaign RO staff put together care packages for families with children hospitalized in the Carle Foundation Hospital neonatal intensive care unit (NICU).

They filled our DSCC drawstring backpacks with items to help make staying at the hospital more comfortable for these deserving parents. Champaign staff are also partnering with Carle’s NICU and mother/baby social workers so families are aware that DSCC is here to help connect them to services and resources.

Carle’s NICU and mother/baby social workers were thrilled to pick up the packages and to have our organization as a source of support for their families.

Lombard Regional Office

The Lombard RO made 17 cozy fleece blankets for the children staying at Almost Home Kids in Naperville.

Almost Home Kids provides transitional care in a home-like setting to children with complicated health needs, training for their families and respite care.

Lombard staff made the no-sew blankets during their breaks. They also donated three cases of water and multiple packs of Kleenex to add to the “Go Bags” that Almost Home Kids provides to their families.

Marion and Olney Regional Offices

The Marion and Olney ROs joined forces to create caregiver bags for families who have children in the NICU at Memorial Hospital of Carbondale.

One of the NICU nurses shared that families often need note pads, pens, snacks, warm socks, etc.

Marion and Olney staff donated enough of these items to fill 25 DSCC drawstring bags.

Mokena Regional Office

On Dec. 7, our Mokena RO team prepared and served dinner at the local PADS (Public Action to Delivery Shelter) at Zion Lutheran Church in Tinley Park.

PADS provides overnight shelter and meals for people who are homeless. Community partners, such as churches and congregations, provide sites for the shelter and teams of volunteers to run it from October to April.

Mokena staff made a dinner of homemade Sloppy Joes, roast turkey, plenty of sides and a dessert for approximately 30 women and children.

Peoria Regional Office

Peoria RO staff collected items off of the wish list for the newly opened Almost Home Kids at OSF Children’s Hospital of Illinois.

Almost Home Kids opened in Peoria in September. The 12-bedroom, 21,000-square-foot facility provides transitional care in a home-like setting for children with complex medical needs. It also provides training and respite care for their families.

Almost Home Kids is funded entirely through community donations.

Our Peoria staff purchased diapers, baby wipes, towels, coffee, children’s books, assorted toys and other supplies to help the children feel more at home.

Rockford Regional Office

The Rockford RO staff provided bags of comfort and a taste of home to the NICU families at Mercyhealth Rockford.

They donated money and purchased wish list items to make 25 backpack care packages.

Each bag contains a journal, pen, water, drink mix, calendar, hand sanitizer, Kleenex, chapstick, gum, granola bars, chicken soup and lotion.

Springfield Regional Office and Central Administrative Office

Our Springfield RO and CAO staff worked together to prepare a meal for the families staying at the Ronald McDonald House Charities of Central Illinois in Springfield.

They decided on a pasta bar menu with sides and a dessert. Employees divided up portions of the menu to do the shopping ahead of time. A group of 11 prepared the meal at the house on Nov. 5.

The Springfield and CAO staff also collected donations to purchase a total of 33 gift cards for the families staying at the house to use at HSHS St. John’s Children’s Hospital’s dining facilities and coffee shops.

We are proud of our staff’s generosity and strong commitment to improving their local communities!

Olney Regional Office’s Dalena Ralston honored for outstanding service to children with special healthcare needs.

Dalena Ralston is the 2018 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.

DSCC is a statewide program that partners with Illinois families and their local communities to help children with special healthcare needs connect to services and resources.

Ralston is a Customer Service Associate in our Olney Regional Office. She’s known as the heart of her office who keeps operations running smoothly and in the best interest of DSCC’s families.

“Dalena embodies DSCC’s focus on partnerships and connections to help children with special healthcare needs achieve their full potential,” DSCC Executive Director Thomas Jerkovitz said. “She works hard to develop relationships with both our families and the healthcare providers who serve them to create a seamless support system.”

Ralston’s colleagues say she is the caring voice that greets all callers and visitors to the Olney office, providing a compassionate ear and a quick response for their needs and concerns.

Each family in DSCC’s program has a care coordination team that helps them identify their child’s medical, social, behavioral, educational and financial needs and develop a plan of care. Ralston takes the time to become familiar with the Olney office’s participants and their providers. She works quickly behind the scenes to make sure the care coordination teams have the necessary medical reports and paperwork to begin supporting families as soon as possible.

Ralston also tracks down available resources and community supports for families who are not eligible for our program but in need of assistance.

“I look forward to coming to work and enjoy helping people in whatever way I can,” Ralston said. “When you enjoy what you do and believe in the mission behind it, that is all you need to work hard and give it your all.”

DSCC staff nominated a total of eight of their colleagues for this year’s Award of Merit. As the winner, Ralston receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.

The other 2018 nominees are:

• Ana Lule of the Mokena Regional Office
• Kristina Marquez of the Rockford Regional Office
• Mariangely Spilotro of the Lombard Regional Office
• Mary Gruneich of the Springfield and St. Clair regional offices
• Lisa Washington of the Lombard Regional Office
• Kim Firkins of the Lombard Regional Office
• Kathy Thomas of the Springfield Regional Office

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

New promotional calendar features artwork from 15 young artists from across the state.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is excited to announce the winners of our 2019 Kids’ Art Calendar Contest.

The calendar features drawings from 15 artists ranging in age from 5 to 19. The calendar theme is based on DSCC’s mission to “Partner, Help, Connect.”

Illinois youth up to age 21 were invited to select any or all of the Partner, Help and Connect templates and illustrate what each theme means to them.

The 12 submitted drawings that received the most “likes” on DSCC’s Facebook page were chosen for each month of the calendar. They are:

 

 

 

Additionally, the next three drawings that received the most likes were selected for the calendar cover. They are:

A big thank you to all of the young artists who participated in the contest! Our staff was very impressed with the quality of work and creativity shown.

To see all of the contest entries, visit our contest submission photo album on Facebook.

Families and professionals from across the state attended annual Stepping Stones of Transition Conference to help youth with special needs.

More than 700 families and professionals gained valuable knowledge about helping adolescents with special needs prepare for adulthood during the 14th annual Illinois Statewide Transition Conference on Oct. 25-26 in Itasca.

The conference, titled “Stepping Stones of Transition,” is aimed at youth, parents, caretakers, vocational professionals, healthcare professionals, educators and others involved with improving outcomes for transition-age youth with disabilities. It highlights the opportunities and resources available for youth as they, their families and support teams plan and prepare for the future.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee to plan this year’s conference.

DSCC also covered the conference-related expenses for 39 of our participant family members across the state. Part of DSCC’s mission is to connect adolescents with special healthcare needs and their families to resources that prepare them for the transition to adulthood and adult services.

Juliette De Nova is the parent of three children in DSCC’s program, including her 15-year-old daughter, Natalie, who has Down syndrome and a heart impairment.

“Natalie is home-schooled, so I’m her teacher, her transition coordinator, I’m the whole kit and caboodle, so there’s a lot to learn,” Juliette said.

She is grateful that DSCC was able to pay for her conference fee and hotel stay.

“I really appreciate it. We’re a single-income family with three kids with medical issues,” she said.

DSCC also coordinated and covered the cost for translation services for non-English speaking participants who attended. One Spanish-speaking parent said she was amazed at how much she was able to learn to prepare for her daughter’s future, all thanks to DSCC’s efforts.

Another teenaged DSCC participant said he was so inspired by the stories he heard that he wants to share his own transition experience at next year’s conference.

The conference consisted of informative breakout sessions in the area of:

• Independent Living
• Education and Training
• Employment
• Community Integration
• Health Care

Former DSCC participant Mary Kate DalCanton, 25, served as the conference’s first youth representative on the conference steering committee. This was her third year attending the conference and she loved having the opportunity to be involved with the planning.

“It’s actually kind of cool,” Mary Kate said.

“A lot of people who come to the conference are teachers and parents,” she added. “One of the reasons I wanted to be on the committee is to get more youth to the conference.”

Mary Kate planned a special Bingo Night for youth only during the conference to give young conference attendees the chance to meet one another and have fun away from their parents.

She solicited donations for prizes for players to encourage more people to participate.

Conference organizers honored Mary Kate for all of her efforts with a special award during the conference luncheon.

“I was very surprised,” Mary Kate said.

More than a dozen DSCC staff members also attended the conference to network, learn from others and strengthen their skillsets and the tools they use to serve our families.  DSCC’s Statewide Transition Coordinator Darcy Contri and Care Coordinator Angel Lawrence from our Champaign Regional Office led a discussion on how to put youth at the center of transition planning for healthier outcomes.

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

During the health care track, Diane Becker of DSCC’s Home Care Quality Improvement and Enrollment Team presented on how providers and professionals can use data on the social determinants for health and success to change interventions and supports for youth in their area.

DSCC Care Coordinator Opal Andraka said she was inspired by her interactions with families from across the state during the conference.

“It was very eye-opening to hear them voice their questions and concerns in an open forum with subject-matter experts. Hearing them tell their stories is always a good way to remind us of our mission,” she said.

DSCC Family Liaison Violet Wiker staffed the Family Oasis Room, which gave families the opportunity to take a break and connect with other families.

DSCC Care Coordinator Autumn DeSilva worked DSCC’s booth at the conference’s exhibit hall. She said it was great to meet our participant families and connect them with their care coordinators in attendance at the conference.

Visit DSCC’s Facebook page to view photos and more information about this year’s conference.

A special trailer makes travel possible for 5-year-old DSCC participant and her family.

Traveling with young children can be challenging, especially if your child has a complex medical condition.

The Taylor family has foregone family vacations for years because of their daughter’s special needs.

Erin, 5, has Down syndrome, a seizure disorder and other health issues that require numerous medical supplies and equipment to keep her safe. She and her family receive support from UIC’s Division of Specialized Care for Children (DSCC).

When Erin became eligible for a wish through the Make-A-Wish Foundation, the Taylors picked something to create new experiences and opportunities they could all enjoy as a family. The Taylors received their new travel trailer earlier this week.

“It’s amazing to know that we can now go and enjoy these things because before this, we actually had to leave Erin at home with nurses or family because we couldn’t take her. So, this is amazing,” Erin’s mom, Autumn Taylor, told WICA 3 News.

You can watch the full story of Erin’s special wish on the WCIA 3 News website.

Congratulations to the Taylors. We wish you many fun adventures!