Families gain valuable information and confidence during the 2018 Institute for Parents of Preschool Children who are Deaf or Hard of Hearing.

Late last year, Kendall and Nick Gould’s infant daughter, Tate, was born with a hearing loss in both ears. The Chicago couple immediately wanted to learn as much as possible to be effective advocates for their daughter.

A few months later, the Goulds packed up Tate and her big sister, Elle, to travel to Jacksonville for the Institute for Parents of Preschool Children Who are Deaf or Hard of Hearing. They were among 23 families from around the state who attended the free one-week program at the Illinois School for the Deaf campus from June 10-15.

“It’s a terrific opportunity to learn a broad array of perspectives,” Nick said.

The couple enjoyed listening to the experiences of other parents as well as professionals with a hearing loss themselves.

“I’m learning a lot and being instilled with confidence as a parent to know we’re doing the right thing,” Kendall said.

The Institute provides support and valuable information on communication options, language development, amplification, social-emotional development and school programs.

“A great experience”

Participating parents attend daily lectures by experts in the field to learn about raising a child with hearing loss.  Lecture topics include child development, types of hearing loss, language development, communication choices, deaf culture and school programming. Other activities include meeting in small groups to discuss specific concerns and connecting with other caregivers.

During the Institute, children attend classrooms overseen by experienced teachers of children who are deaf or hard of hearing. They have the opportunity to receive hearing, vision, psychological, speech, language and educational evaluations as well as play with other children who have a hearing loss.

Their siblings are also welcome to attend. This year’s sibling program had 15 children.

There is no cost for families to participate, and meals and housing are provided at no charge.

UIC’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors. DSCC Care Coordinators and other team members work hard to help eligible families enroll in the Institute.

Tiffany Farrer attended the Institute with her 2-year-old daughter, Jane, who has a hearing loss in both ears. Their family had just moved to Quincy from South Dakota on May 31.

Tiffany had learned about the Institute on the internet and thought it could be helpful to introduce her family to services and providers near their new home. She explained that her family didn’t yet have an Illinois doctor or audiologist for Jane.

Springfield DSCC Care Coordinator Daniel Porter immediately contacted the Farrers and traveled to their home on June 5. He helped the family fill out the applications and submit all necessary paperwork to enroll with DSCC. Daniel also assured the family he would help find the right providers within their insurance coverage.

The following day, Jane was enrolled as a DSCC participant and accepted for the Institute.

“Daniel took care of everything,” Tiffany said.

While at the Institute, Tiffany said she enjoyed learning more sign language to give her daughter more communications options.

“It’s a great experience, I’m happy to be here,” she said.

“Thankful for the friendships”

Andrea Stambaugh attended the Institute with her 2-year-old son, Axel Johnson. Axel has bilateral hearing loss and cochlear implants in both ears.

Andrea is active with Illinois Guide by Your Side and heard one of the program’s parent guides speak highly of the Institute. She wanted to be able to learn more about resources and develop relationships with other families who have children with a hearing loss.

“I’ve liked meeting the other families, and it’s been good for Axel to see other deaf children and adults,” Andrea said.

DSCC Family Liaison Violet Wiker said these special connections and conversations are what the Institute is all about.

“These families are so appreciative that they have the opportunity to learn from so many different professionals. They are even more thankful for the friendships they are forming,” she said.

For more information about the Institute for Parents of Preschool Children Who are Deaf or Hard of Hearing and how DSCC can support children with hearing loss, call (800) 322-3722 or email dscc@uic.edu.

Visit DSCC’s Facebook page for photos from this year’s Institute.

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• The condition in this story is covered by Specialized Care for Children

DSCC partnership with UIC’s Division of Audiology will help more newborns with suspected hearing loss receive timely screenings and follow-up services.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) continues to help improve outcomes for Illinois infants and children with suspected hearing loss through timely screening and follow-up services. Recently, DSCC’s Early Hearing Detection and Intervention (EHDI) program developed a partnership with UIC’s Department of Otolaryngology (Division of Audiology) to offer training sessions on Otoacoustic Emissions (OAE) screening and provide technical assistance when needed.

Research shows that newborns with hearing loss can, by the time they enter kindergarten, develop language skills that are similar to their peers without hearing loss when:

1. Their hearing loss is identified through screening before 1 month of age,
2. Their hearing loss is diagnosed before 3 months of age, and
3. They start intervention services before 6 months of age.

To help Illinois newborns reach these “1-3-6” benchmarks, DSCC receives a grant from the federal Health Resources and Services Administration (HRSA). HRSA funds are used to promote screening of newborns to detect hearing loss, timely diagnostic evaluation and early intervention to lessen the effects of hearing loss on language acquisition among infants and young children. DSCC is providing a part of these funds to the Division of Audiology to train public health nurses from the Chicago Department of Public Health and other county health departments and home visiting programs on the use of OAE screening devices.

According to the Early Childhood Hearing Outreach initiative (a part of the National Center for Hearing Assessment and Management at the Utah State University), “OAE hearing screening is conducted with a portable unit connected to a small earphone or ‘probe’. Placed in the child’s ear, the probe delivers a series of quiet sounds that travel through the ear canal and the small bones in the middle ear to reach the inner ear (cochlea). A cochlea that is functioning normally responds to sound by sending a signal to the brain, while also producing an ‘acoustic emission’ – a very small sound wave response that travels back through the ear. The emission is picked up by a tiny, sensitive microphone inside the probe, the response is analyzed by the screening unit and, in less than 30 seconds, the result is summarized on the screen as a ‘pass’ or a ‘refer’.”

A “pass” result means that the child exhibited normal hearing in both ears at the time of the test; it requires no further testing in an otherwise healthy infant without any risk factors for hearing loss.  A “refer” result means that the child did not pass the hearing screen in one or both ears. A refer result does not mean that the newborn has a hearing loss but rather that additional testing is needed.

In December 2017, DSCC provided eight OAE screening devices to the Chicago Department of Public Health to:

• Provide outpatient hearing screenings to children who did not pass their initial hearing screening at birth
• Reduce the number of newborns suspected of hearing loss who are lost to the state’s screening and follow-up system; and
• Ensure that more infants with hearing loss receive timely diagnostic evaluations and referral for intervention services

The UIC Division of Audiology is an expert in newborn hearing screening, diagnostic evaluation and treatment of hearing loss. DSCC arranged for the Division of Audiology to hold three training sessions in January, March and April 2018 to teach all 27 of the Chicago Department of Public Health’s public health nurses about newborn hearing screening and the proper use of OAE screening devices. In addition, the Division of Audiology will continue to train staff from other local health departments or home visiting programs in Illinois that are in need of training for new employees or seeking refresher training.

Hearing loss is an eligible medical condition for our program, which supports children with special healthcare needs and their families and connects them to services and resources. DSCC served more than 2,000 Illinois youth with hearing impairments during fiscal year 2017.

DSCC’s EHDI program expects that this partnership with the Chicago Department of Public Health and the UIC Division of Audiology will help identify more families of newborns with hearing loss and encourage families of children with confirmed hearing loss to seek intervention services to help their children reach their full potential.

Dr. Gabriel retires after helping hundreds of DSCC youth through free orthopedic clinics.

Eleven-year-old Bayan sat quietly in an exam room during a recent orthopedic assessment clinic hosted by the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). A huge smile flashed across her face as Dr. Keith Gabriel walked into the room.

He clasped her hand in his and gently leaned down to tell her goodbye after eight years of care for issues related to her scoliosis and cerebral palsy.

“We’ve very sad to see him go,” Bayan’s father, Jaouad, said. “He’s helped her a lot.”

Dr. Gabriel, an orthopedic surgeon with HSHS Medical Group in Springfield, is retiring after 16 years of providing free orthopedic assessment clinics to DSCC participants in east-central and southern Illinois.

“DSCC has been fortunate to partner with Dr. Gabriel to provide thorough and compassionate care for children in our program with muscle, bone and joint issues,” DSCC Executive Director Tom Jerkovitz said. “Dr. Gabriel’s clinics provided a valuable service to our families and a convenient option for youth who live far from Springfield and have difficulties traveling there.”

Dr. Gabriel saw 19 patients during his last DSCC-sponsored clinic at Christie Clinic in Urbana on May 4. The youth and their families all signed a thank-you poster. DSCC staff also treated Dr. Gabriel to a potluck lunch with his favorite pizza and cake to thank him and celebrate his retirement.

Dr. Gabriel said he’s enjoyed working DSCC and praised how we fulfill our mission to partner with Illinois families and communities to help children with special healthcare needs connect to services and resources.

“I’m very impressed with the dedication of the Care Coordinators and think this is truly a service that benefits the state of Illinois,” he said.

Dr. Gabriel first started working with DSCC participants from the East St. Louis area while he worked at Cardinal Glennon Children’s Hospital in St. Louis from 1989 to 1999.

In 2002, he took a job in Springfield with SIU School of Medicine and began partnering with DSCC to provide orthopedic assessment clinics for youth served by our Champaign, Olney and Marion regional offices, all at no cost to the families.

In recent years, Dr. Gabriel’s clinics typically drew children from Champaign, Vermilion, Douglas, Macon, Iroquois, Kankakee and McLean counties. Some attendees were in need of routine checks and monitoring for bone or joint problems while others were referred by physical therapists who observe a possible issue. Dr. Gabriel also checked children’s orthotics, Ankle Foot Orthosis braces, wheelchairs and so on to make sure they are not outgrowing the devices and make adjustments for any pain or discomfort.

Dr. Gabriel has treated hundreds of DSCC youth, many since their earliest years of life.

“At the DSCC clinics, the nature of what we see is chronic conditions,” he said. “We grow up together, or I grow old while they grow up. These children I’ve known since they were babes in arms.”

DeAnn Pribble says her son Aiden Stricklin has seen Dr. Gabriel for as long as she can remember. Aiden is 15 and has hydrocephalus and spastic quadriplegic cerebral palsy.

“(Dr. Gabriel) does a good job of being outgoing for the kids and making visits fun for them,” she said. “He’s also very thorough.”

Twelve-year-old Khalil has also seen Dr. Gabriel since birth. He and his mom, Candice, say they’ve appreciated Dr. Gabriel’s bedside manner.

“He doesn’t just speak directly to me. He speaks to Khalil and makes sure he understands what’s going on,” Candice said. “We’re definitely going to miss him.”

Dr. Gabriel said he’s been honored to work with DSCC families and looks forward to continuing to serve on our Medical Advisory Board.

Visit our Facebook page to see photos from Dr. Gabriel’s last DSCC-sponsored clinic.

A variety of overnight and day camps are available throughout Illinois.

Are you looking for fun and engaging activities to help your child make new friends, develop new skills and foster their independence?

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

The list of 2018 summer camp activities is available on our events calendar, where you can see opportunities listed for each month.

You may also search for events in your area by clicking on a regional office near you.

Report explains our mission and highlights our progress.

UIC’s Division of Specialized Care for Children (DSCC) partners with Illinois families and communities to help children and youth with special healthcare needs connect to services and resources. Our fiscal year 2017 Annual Report explains how we fulfill this mission and the impact it has on families. The report also highlights the progress we’ve made toward our vision that children and youth with special healthcare needs and their families are at the center of a seamless support system that improves the quality of their lives.

The FY 2017 Annual Report covers July 1, 2016, through June 30, 2017. During that time, DSCC served more than 18,300 families. Our organization also began to celebrate 80 years as the state’s designated organization to serve children and youth with special healthcare needs.

We hope this report can help you better understand our commitment to children and families and the important work we do.

Click here to read the report.

Mokena Regional Office’s Lynda Miller honored for outstanding service to children with special healthcare needs.

Lynda Miller of Lemont is the 2017 recipient of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) Award of Merit. 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 the services and resources they need to reach their full potential. We serve thousands of families each year in all 102 Illinois counties through a network of nurses, social workers, speech pathologists, audiologists and other team members in 12 regional offices.

Lynda is a Program Coordinator Assistant in DSCC’s Mokena Regional Office, working with Care Coordinators in her office to develop a plan of care for each family that addresses their child’s medical, social, behavioral, educational and financial needs.

“Lynda exemplifies DSCC’s mission to partner, help and connect with families and communities to improve the lives of children with special healthcare needs and put them at the center of a seamless support system,” DSCC Executive Director Thomas Jerkovitz said. “Lynda has touched countless lives during her nearly 30-year career and is an unwavering champion for our organization and the families we serve.”

Colleagues across the state say Lynda’s primary focus and concern is giving DSCC families the best service possible and treating them with kindness and respect. Lynda is also praised as an effective problem-solver who is willing to step outside of her comfort zone to learn something new, hard or time-consuming to get the job done.

Lynda, who was also nominated for the 2016 Award of Merit, said she enjoys all facets of her job. “I love helping whenever and wherever I can,” she said. “I have been lucky to work with a lot of people who have mentored me along my DSCC career.  I wouldn’t have the knowledge and ability to do what I do without their help and assistance along the way.”

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

The other 2017 nominees are:

• Dawn Brzostek, Customer Service Assistant, Rockford Regional Office
• Cherie Dalbke, Care Coordinator/Speech and Hearing Consultant, Chicago Core Regional Office
• Diana Maldonado, Program Coordinator Assistant, Lombard Regional Office
• Glenda Rahn, Program Coordinator Assistant, Champaign Regional Office

Congratulations, Lynda, and a big thank you to all of our nominees!

500-plus families and professionals attended the 13th annual Stepping Stones of Transition Conference in Springfield

More than 500 families and professionals learned valuable information about helping adolescents with special needs/disabilities prepare for adulthood during the 13th annual Illinois Statewide Transition Conference on Oct. 23-24 in Springfield.

The conference, titled “Stepping Stones of Transition,” is aimed at youth, parents, caretakers, vocational professionals, healthcare professionals, educators and other key stakeholders  Participants were invited to discuss the possibilities for students with disabilities in the areas of independent living, education and training, employment, community integration, health care and self-advocacy. Youth and young adults with special healthcare needs learned how to plan for their future and life after high school, how to sort through the maze of resources and what skills are important to develop to prepare for adulthood and meet their goals.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) served on the steering committee for this year’s conference and covered the conference-related expenses for 20 of our participant families 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 the delivery of adult services.

Former DSCC participant Ashley Santiago-Sanchez, 21, attended the conference with her parents and younger brother. Her father, Ivan, said his family wanted to gain as much information and resources as possible to help foster her independence and prepare for adult life in the community.

Saurabh and Mukta Agarwal attended with their teenaged daughter, Radhika, who currently is enrolled with DSCC and requires skilled in-home nursing. Their Care Coordinator made sure that DSCC paid for the family’s registration, hotel, transportation and cost for a daytime nurse for Radhika.

“A lot of times families (like ours) don’t know the options,” Saurabh said of planning for the future with a medically complex child.

Saurabh said he was especially touched by keynote speaker Matt Cohen, who spoke about his experiences with his son and how he learned to determine transition priorities for students and ensure their real-life needs are met. He and Mukta also appreciated the opportunity to make connections with other families and professionals.

“All of the information was very helpful, and now we have to do our homework,” Saurabh said.

Click here to view photos and more information about this year’s conference.

The 2018 Illinois Statewide Transition Conference is scheduled for Oct. 25-26 at the Westin Chicago Northwest Hotel in Itasca.