UIC’s Division of Specialized Care for Children highlights the need for timely screenings and follow-up services in honor of Better Hearing and Speech Month.

The ability to communicate is one of the most important achievements of early childhood.

If a child’s ability to hear or speak is limited or absent, different supports are necessary to reach this milestone.

In honor of Better Hearing and Speech Month in May, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) reminds parents and caregivers of the importance of early screenings and follow-up services for children and youth with hearing and speech impairments.

“If left undetected, hearing and speech impairments can affect a child’s behavior, social interactions, academic success and more,” DSCC Executive Director Thomas Jerkovitz said.

“Early detection is crucial as many services and resources are available to help these children develop age-appropriate language skills. The sooner a child receives a diagnosis, the sooner he or she can receive the proper support to reach their full potential.”

DSCC is a state program that serves Illinois children with special healthcare needs, including hearing and neurologically-related speech impairments.

Our organization has 11 regional offices throughout Illinois. DSCC staff includes speech and language pathologists, audiologists, social workers, nurses and other professionals trained to help families find the specialty care and resources their child needs.

DSCC care coordination teams are a great resource for both families and healthcare professionals when a child does not pass a hearing screen and needs a diagnostic evaluation. They can also assist when there are concerns about a child’s communication skills.

Our Care Coordinators can educate families about their child’s condition, find specialized medical care for their unique needs and explain available options for communication and language development.

They can also attend school meetings with parents to ensure their child’s educational needs are being met and connect families with support services and community funding opportunities, if needed.

DSCC also plays an important role in the Illinois Early Hearing Detection and Intervention (EHDI) program. The EHDI program works with hospitals, pediatric healthcare providers, audiologists and parents to ensure:

• All infants are screened for hearing loss no later than 1 month of age.
• All infants who do not pass their hearing screen receive a diagnostic evaluation no later than 3 months of age.
• All infants with a hearing loss enroll in early intervention services no later than 6 months of age.

Research shows that infants with hearing loss can develop similar language skills to their peers without hearing loss by the time they enter kindergarten when these “1-3-6” benchmarks are met.

DSCC recommends that parents and caregivers talk to their child’s healthcare provider if they have questions or concerns about their child’s hearing, speech or language. The American Speech-Language-Hearing Association provides helpful resources about warning signs at https://identifythesigns.org/.

If a child does not pass a hearing screen and is in need of a diagnostic evaluation or support for a medical condition, parents and caregivers can contact us at (800) 322-3722 or dscc@uic.edu.

Day and overnight summer camp opportunities for all ages and abilities throughout Illinois.

Summer is fast-approaching, along with a long break from school. We’re here to help you find the right activities and programs to keep children and young adults engaged and learning.

Our Care Coordinators and support staff have compiled a list of day and overnight summer camp opportunities across the state. These camps are designed for a variety of special needs and abilities, including many of our program’s eligible medical conditions.

Whether your child wants to make new friends, develop new skills, meet others with their condition or foster their independence, our 2019 summer camp list provides a variety of options.

Our events calendar shows the summer camps listed by date. You may also search for events in your area by clicking on a regional office near you.

Doctors placed a “winter coat” around Eloise Hoffman’s heart to fix a rare congenital heart defect.

Eloise Hoffman is an energetic 2-year-old who loves to laugh, play outside and chase her grandparents’ dog.

“She’s just this little fireball that people can’t help but love,” her mom, Krista Hoffman,  said

Thanks to what her family calls a “winter coat” for her heart, Eloise is now thriving after a major surgery to fix her rare critical heart defect.

Her amazing story has gained national news coverage and captured the hearts of thousands across the country.

“People have been so supportive,” Krista said. “We are so grateful that everyone cares so much for her and for us.”

Shortly after she was born, Eloise’s pediatrician noticed she had a heart murmur and referred her to Dr. Michael Perez, a pediatric cardiologist at Northwestern Medicine Central DuPage Hospital.

Dr. Perez diagnosed Eloise with truncus arteriosus, a birth defect of the heart in which only one common blood vessel comes out of the heart instead of two. The single vessel means oxygen-poor blood and oxygen-rich blood get mixed together, sending too much blood to the lungs and causing the heart to work harder.

“It sort of felt like it was out of a movie, because he told us and then a few minutes later we were ushered into another room because we would have to go up to Lurie Children’s Hospital via either a helicopter or ambulance,” Eloise’s father, Matt Hoffman, told People Magazine, who covered Eloise’s story. “It all just took off from there within five minutes of learning what was happening.”

Eloise required immediate surgery or she would go into heart failure. When she was only three weeks old, doctors placed a piece of Gore-Tex insider her heart.

Gore-Tex is a material that’s often used to make jackets and outerwear. For Eloise, it serves as conduit to make up for the single blood vessel out of her heart.

“I like to tell people that she’s got a little winter coat in there, keeping her heart warm,” Matt told Good Morning America.

To Matt and Krista’s relief, the surgery was a success. Eloise soon came home to her parents and older brothers.

In 2018, Eloise became enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). Her older brother Henry, who has a g-tube and dysphasia, is also a DSCC participant.

“Since we have the two children that have special needs, it can be difficult sometimes,” Krista said. “We just really appreciate that there is a service out there like this for families like us to take some of the burden away. It allows us a little less stress and a little more time to just be parents.”

Today, Eloise is doing great and continues to grow and gain weight normally.

“She eats like a champ. We actually call her the little garbage disposal at our house because she loves everything,” Krista said.

Dr. Perez recently told the Hoffmans that Eloise is near the point where she’ll only need annual appointments.

“That’s huge,” Krista said. “She will probably need a (catheterization) procedure in a year or so because she has stenosis where the conduit was stitched in, and she as a mild to moderate leak in her valve. Those are all future issues, though.”

Krista said her family appreciates the interest in Eloise’s condition. She believes it is important to spread awareness and talk more about congenital heart defects.

“For any parents who are pregnant or have truncus babies, it seems scary, but it’s not as frightening as you think it will be,” Krista told People Magazine. “Focus on the things you can change, not the things that you can’t.”

 

Community support helped the Barmaki family achieve homeownership.

Raising five children in a small two-story apartment is difficult. It’s especially challenging when one of them uses a wheelchair.

Jaouad and Hoda Barmaki had to carry their daughter Bayan up and down the steps to access the bathroom and her bedroom. Bayan, 11, is unable to walk due to scoliosis, cerebral palsy and other health conditions.

This challenge was daily life until the Barmakis applied for Habitat for Humanity of Champaign County’s homeownership program.

With Habitat’s help and community support, the Barmakis now have a brand-new one-story home that’s fully accessible for Bayan’s needs.

“It’s so much easier,” Jaouad said. “No more going up and down the stairs. If I’m not here, my wife can easily get (Bayan) where she needs to be.”

Jaouad and Hoda moved from Morocco to Champaign, where they got married and started a family. Bayan is their oldest child.

Bayan became enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) shortly after birth.

Jaouad said DSCC’s support has been extremely helpful for his family, especially when he faced language barriers when communicating with certain providers.

After Habitat accepted the Barmakis’ application, the family’s DSCC Care Coordinator Dan Beagles and Bayan’s school physical therapist helped provide input on the building plans.

“We met at the Habitat office here in town, and the builder had the blueprint of what he was picturing,” Dan said. “We went over what would benefit Bayan the most with accessibility and safety.”

The Barmakis’ new home has zero-step entrances and a more spacious floor plan to make it easier for Bayan’s wheelchair to navigate. Her bedroom has a widened doorway, and the bathroom features a roll-in shower with a lift.

The new home is also located near the Barmaki children’s schools and has plenty of yard space for the kids to play outside.

As part of the homeownership program, the Barmakis put in 250 hours of “sweat equity” that included home maintenance classes, hours working in the

Habitat ReStore and working on the build site.

They moved into the house on March 7.  Local news outlets, including WCIA 3 News and Smile Politely magazine, covered the house’s dedication.

Jaouad recently took Dan on a house tour during one of Dan’s regular home visits with the family.

He said everyone involved in the building process was very helpful and his family is deeply grateful.

Dan enjoyed seeing the finished house and how it’s improved their quality of life.

“It couldn’t have happened to a nicer family,” Dan said. “They are such a joy to work with.”

Congratulations to the Barmakis!

Trisha Jamison’s son Everett has Dravet syndrome, a rare form of epilepsy.

Life with epilepsy can be a hard battle and an emotional roller coaster.

“To watch your small child have a seizure for an hour and be so helpless is the absolute worst feeling in the world,” Trisha Jamison said.

Trisha’s 3-year-old son Everett has Dravet syndrome (DS), a rare form of epilepsy that causes developmental and cognitive delays. He’s been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for the last two years.

After his diagnosis, Trisha immersed herself in research and connected with other parents  and individuals who have been affected by epilepsy and DS.

Her connections led her to start a successful 5k walk last October that raised more than $11,000 for the LaSalle County Epilepsy Foundation, Dravet Syndrome Foundation research and local families affected by epilepsy. Trisha says the plan is to make the walk an annual event.

“My personal driving force is after attending some Dravet syndrome conferences and talking to many in an online DS caregiver support group, there are a lot of clinical trials and research being done for better medicines and a potential cure,” Trisha said. “In reality, these trials and research need money to continue, so the thought of them potentially finding a cure for my baby made me jump at the chance to fundraise for these trials. I thought it’s the least I could do.”

The idea for the “Seize Hope” fundraiser and awareness walk on Oct. 13 came from her friendship with Erika Fleck of the LaSalle County Epilepsy Foundation of North Central Illinois.

Trisha and Erika met through a mutual friend. Erika, who was diagnosed with epilepsy in adulthood, became a great resource for Trisha. The pair have attended several DS and epilepsy conferences together and decided to try fundraising for both foundations.

“The idea for the 5k walk came to us because there’s nothing like that in our area for Epilepsy or Dravet syndrome awareness, yet there are a lot of individuals in our area that have been affected by seizures in some form or another,” Trisha said.

“We decided to do this, not just for the financial aspects but to raise awareness and let people know that they’re not alone and there are resources out there for them.”

Trisha said she initially hoped for 50 runners and to raise several hundred dollars. But the community support exceeded her expectations with more than 100 registered walkers and $11,000-plus raised.  The Times newspaper in Ottowa and the LaSalle NewsTribune each covered the event.

While most of the funds were donated to support research, Trisha said a small portion of the proceeds were kept to support local epilepsy families with resources and related expenses.

“I want parents and caregivers to know there are support groups and so many resources available in this day and age.  I couldn’t do daily life without those other parents.  They are encouraging and so full of knowledge,” Trisha said.

Everett has daily atonic or drop seizures, which cause a partial or complete loss of muscle tone, and is cognitively closer to a 1-year-old. Doctors initially told the Jamisons that Everett wouldn’t walk but with frequent physical therapy, he took steps last fall.

“He is on four meds and has a VNS (vagus nerve stimulation) device. But you know what, that isn’t who he is.  He is so funny. He is, most of the time, so happy,  and he gives the best hugs in the world,” Trisha said.

She urges other DS and epilepsy families to be an advocate and voice for their child.

“Buckle up, hold on tight and don’t give up hope,” Trisha said.

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!

Illinois DCFS and Goodwill Great Lakes are connecting current and former DCFS youth with full- and part-time jobs.

The Illinois Department of Children and Family Services (DCFS) is partnering with Goodwill Great Lakes Food Services to provide job opportunities to current and former disabled youth in care.

Teenagers and adults will have the opportunity to learn new skills and earn a good wage while making a difference.

To be eligible for an interview, you must be:

• 17 years old or older
• A current or former youth in care with DCFS
• Currently disabled
• A resident of the Chicago metropolitan area

Low-cost shuttle service is available from designated locations in Chicago and Skokie.  Free shuttle service is available from the Great Lakes Metra Station.

Please contact Corey Shannon at (312) 405-0491 or corey.shannon@illinois.gov for more information and next steps for setting up an interview.

Also note that The AbilityOne Program requires disability verification from the youth’s caseworker to determine an individual’s eligibility.

A case worker will need to accompany applicants to the interview.

Below are tips to prepare for the interview:

• Dress appropriately
• Be on time
• Show willingness to learn a new skill

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.