Children and young adults’ original drawings will be featured in DSCC’s 2019 promotional calendar.

Calling all young artists! The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is seeking children and young adults’ artwork for its 2019 calendar. The calendar theme is based on DSCC’s mission to “Partner, Help, Connect.”

Who is eligible?

The contest is open to all Illinois youth up to age 21. Artists can choose any or all of the Partner, Help and Connect templates and illustrate what each theme means to them. Creativity is encouraged!

Click on this template link to print them out and personalize. You may also call DSCC at (800) 322-3722 to have templates sent to your home.

The template includes a release for parents and/or youth ages 18 and older to sign. A signed release must be submitted with the artwork in order to be entered into the contest.

How to submit:

Artwork and a signed release should be submitted to DSCC by Sept. 1, 2018.

Mail to: UIC Division of Specialized Care for Children
3135 Old Jacksonville Road
Springfield, IL 62704
Attention: Amanda Simhauser

OR

If you are a DSCC participant, you can give contest submissions to your Care Coordinator.

Selection process:

Each submitted drawing will be posted on DSCC’s Facebook page . Drawings that receive the most “likes” by Sept. 21, 2018, will be considered for the calendar. Be sure to visit our page, vote and share!

This calendar will be given away for promotional purposes and will not be sold. Winners will have a calendar mailed to the address provided.

 

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.

---

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

Program open to all youth age 18 and under to fill the nutritional gap during the summer months.

Many Illinois families depend on their children’s schools to provide regular, healthy meals. The Illinois State Board of Education manages the Summer Food Service Program (SFSP) to provide children continued access to free and nutritious meals and snacks during the summer months when school is out.

The SFSP program serves children and teens age 18 and younger.

To find a meal site near you, call (800) 359-2163, text “FoodIL” to 877-877 or visit http://summerfeedingillinois.org/.

“Children need healthy food during the summer as much as they need it during the school year,” said State Superintendent of Education Tony Smith, Ph.D. “The Summer Food Service Program brings critical resources to communities across the state and helps all our children stay ready to learn. ISBE is proud to administer the Summer Food Service Program.”

To learn more about this year’s SFSP program, read the State Board of Education’s SFSP news release.

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.

Comments for the proposed medically fragile, technology dependent waiver amendment are due June 9.

The state invites families to provide their input for an amendment to the Home and Community Based Services (HCBS) Waiver for children who are medically fragile and technology dependent. This waiver is operated under the Illinois Department of Healthcare and Family Services (HFS).

The amendment is necessary to provide for the statewide expansion of its mandatory managed care delivery system to all 102 counties in Illinois.

Families who would like to view the waiver amendment may do so in the following ways:

• Electronically at https://www.illinois.gov/hfs/SiteCollectionDocuments/MFTDPublic2018.pdf.
• A hard copy  may be requested by calling (217) 557-0997.
• Copies are also available at the following locations:
  • Healthcare and Family Services
    201 South Grand Avenue East
    Springfield, IL 62763OR
  • Healthcare and Family Services
    401 S. Clinton St.
    Chicago, IL 60607

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) also has copies of the waiver amendment for families to review at the following DSCC regional offices:

• Chicago Home Care
• Lombard
• Springfield

Comments may be submitted through June 9. Comments may be sent through the following methods:

1. Email to HFS.HCBSWaiver@illinois.gov
2. Mailed to the Illinois Department of Healthcare and Family Services
   Attn: Waiver Management
   201 South Grand Avenue E., 2nd Floor
   Springfield, IL 62763

A summary of the public notice and comments will be incorporated into the amendment. The summary will include modifications to the initial waiver amendment and the reasons why the State of Illinois adopted or did not adopt specific comments or recommendations.

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.

Popular movie about a boy with craniofacial differences strikes a chord with DSCC participants.

The hit movie “Wonder,” based on a best-selling book about a boy named Auggie with profound facial differences, has moved audiences across the country with its message of kindness and acceptance. The movie is particularly emotional for children and families who’ve experienced many of the movie’s lessons and themes firsthand through their own experiences with a craniofacial condition.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) program served more than 1,600 youth with craniofacial anomalies and other disfiguring conditions in fiscal year 2017. Several of these youth and their families in our program have shared their thoughts about “Wonder” with their local media and the impact they hope the film will have on others. Click below for those stories:

• Emily Cihla shared her thoughts and experiences with several Chicago media outlets –
  • ABC7 Chicago, “Teen Talks About Having Treacher Collins Syndrome”
  • Chicago Sun-Times, “Teen Hopes Wonder Film Will Inspire Others with Rare Syndrome”
  • NBC Chicago, “Foundation Brings Smiles to Kids with Facial Conditions”
• Kinley Winningham’s parents spoke with ABC Newschannel 20 – “Wonder Brings Hope to Local Parents”
• Tikyle Yates spoke with the Chicago Tribune– “Kids with craniofacial conditions hope film ‘Wonder’ will nurture awareness in others”

These teens and families did a wonderful job of promoting awareness about their condition and the importance of inclusion and understanding. Great job to all!

Financial assistance and resources from DSCC helped Payton’s family pay for modifications to their home and vehicle so he can stay active.

Eight-year-old Payton was born with a gene mutation so rare that it doesn’t have a name. The condition affects the STXBP1 gene and causes seizures, developmental delays, nonverbal communication and abnormal muscle movements.

“There are less than 250 people (with the mutation) that we know of worldwide,” Payton’s mom, Kristy, explained. “It is almost like a spectrum-type diagnosis… Doctors just don’t know much about it.”

What Payton’s family does know is that his symptoms are severe. He cannot walk or sit up and is nonverbal. However, he has no problem letting his happy, easygoing personality shine through. Payton loves his little sister, Hunter, and doing special extracurricular activities, like horseback riding and water therapies.

Kristy says the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) has helped provide the accommodations, equipment and resources needed to help Payton stay active and comfortable as he grows.

Payton became enrolled with DSCC six years ago. His family qualified for financial assistance from DSCC to install a ramp in their home for Payton’s wheelchair.

“He’s getting bigger, and we were starting to have difficulties getting him in and out of our vehicle and his car seat,” Kristy said. “I contacted (our Care Coordinator) Beverly and she told me about the ways DSCC could help.”

DSCC was able to provide some financial assistance to modify the van with a lift, but the remaining price tag was still too expensive for the family to afford. Beverly then used her connections within the community to link Payton’s family with two charitable organizations to pay most of the remaining cost.

“Beverly went above and beyond,” Kristy said. “It’s been awesome. Now I can wheel him in and strap him down, and it’s so much easier without having to get him out of the chair and do multiple transfers.”

The modification helps the family of four’s busy lifestyle, especially now that Payton is in second grade and is increasingly involved in activities outside of the home.

Kristy said DSCC’s assistance and Beverly’s patience and hard work have helped make her family’s lives much easier. She also values Beverly’s knowledge of community resources and services and encourages other families to work with DSCC and ask what may be available to help their family.

“If Beverly wasn’t able to help with something, she can always point me in the right direction of where I could turn,” she said. “You just need to ask the question, and don’t be afraid to ask.”

 

DSCC families in need receive gifts and necessities from our generous community partners.

Partnerships are a crucial part of our mission to help children and youth with special healthcare needs connect to services and resources. For 80 years now, DSCC staff has developed relationships with social service agencies and community organizations across the state to help improve the lives of our children and families. During this holiday season, we are especially grateful for our community partners who’ve stepped up to ensure that some of DSCC’s neediest families have a merry Christmas.

In the Springfield Regional Office, Care Coordinator Robin Mahnken worked together with the Salvation Army in Jacksonville and her dedicated team of colleagues to deliver piles of wrapped presents for a sick 1-year-old in our program and her three siblings. The girl was born with Down Syndrome and a heart impairment that required surgery a few months later. In November, she developed an upper respiratory infection and was hospitalized and placed on a ventilator.

Robin has stayed in close contact with the girl’s mother since her admission to the hospital and learned the family is greatly strained financially. During the first week of December, the mother asked Robin to help find any available Christmas assistance for her children. Though the deadlines for many local charities’ assistance programs had already expired, Robin spoke with a director at the Salvation Army, who made arrangements for Robin to “shop” their facility for items on each of the children’s wish lists while the mother stayed at her daughter’s side in the pediatric intensive care unit.

“I anticipated receiving an article of clothing and one or two toys for each child.  I was overwhelmed by all of the gifts selected.  Volunteers called to me from every direction suggesting this or that for one of the children,” Robin said. “The director kept telling me I hadn’t selected enough.  I left with a carload of toys and clothing.”

With the mother in no position to wrap gifts at the hospital, Robin snapped photos of the items to show the mother and wrapped them herself. Robin saved the little girl’s packages to be wrapped by Springfield RO staff during their holiday party this week. Springfield RO members also donated funds to purchase a Walmart gift card for the family. Robin and her husband, with the family’s permission, delivered four huge bags of wrapped presents and the gift card to the appreciative family on Wednesday night.

At our Lombard Regional Office, staff members have developed a special bond with their building neighbor, Hope Fellowship. This bond was strengthened last year when Pastors Jeff Brewer and Jon Trott helped the office cope with the difficult loss of their assistant regional manager, who passed away unexpectedly in November 2016. The pastors’ support of the Lombard RO has continued ever since and earlier this month, Pastor Jeff asked Program Coordinator Assistant Kim Firkins if any DSCC families in the Lombard office’s coverage area need extra help during this year’s holidays.

Kim worked with the Lombard office’s managers and assistant managers to check with staff for families in need. Staff suggested a total of eight families, and Kim collected information about each family member and provided it to Hope Fellowship. Hope Fellowship’s parishioners purchased gifts for each family member. Their gifts include diapers, wipes, a homemade fleece blanket, pajamas, DVDs, gloves, hats and a generous assortment of gift cards for gas, groceries and various stores and restaurants. Hope Fellowship also provided stockings for each child and parent.

Kim coordinated the receipt of gifts, and Lombard’s Care Coordinators are delivering the items to the families.

Further north at our Rockford Regional Office, a Care Coordinator learned that a toddler was being discharged from a transitional care facility earlier this month after being separated from her family for a year.

“This little one became part of a bustling home of five brothers and sisters who were overjoyed to welcome her home,” her Care Coordinator Shan Johnson said.

On Dec. 14, the toddler’s mother told Shan that she had no Christmas presents for the children.

Shan contacted the Rockford Salvation Army, who “without hesitation” opened their doors for Shan and let her into their warehouse on a Sunday afternoon to handpick gifts for the children. They even provided gift bags.
“I will never walk past a (Salvation Army) red kettle again without thinking about this happy miracle,” Shan said.

A big thank you to these organizations, our staff and all of our community partners for their support and service to our families throughout the year!

Miguel and Carlos spend time with Club America soccer team, thanks to their DSCC care coordination team.

One of the main ways that UIC’s Division of Specialized Care for Children (DSCC) helps children with special healthcare needs and their families is through a process called care coordination.

Our care coordination addresses each child and family’s unique needs. It can include helping a family understand their child’s diagnosis or connecting a family in need of financial assistance with the right resource. Sometimes, our care coordination involves providing experiences that simply help a special needs child be a kid.

A care coordination team from DSCC’s Chicago Core Regional Office recently used their creativity to provide one such priceless experience to two brothers with muscular dystrophy.

Miguel, 17, and Carlos, 14, are big soccer fans who live near Toyota Park in Bridgeview. The park hosts major league soccer games with players from around the world, and the teens had hoped to meet the Mexican soccer team Club America.

Miguel and Carlos’ mother reached out to their Care Coordinator Rita DeSoto and Program Coordinator Assistant Maria Carrera to see if they could help.

Maria invited their mother to the Chicago Core office to sign authorizations so she could contact the team’s marketing and promotions manager on her behalf. Rita was able to reach the manager two days before the game and with the family’s permission, wrote a letter detailing Miguel and Carlos’ condition and why they wanted to meet the team.

Thanks to Rita and Maria’s efforts, the teens were able to meet the team and take photographs and collect autographs from their favorite players. Their mother reported that they were “surprised, grateful and overjoyed.”

“Each day freedoms such as walking, running, playing, laughing, eating and breathing can be taken away from children with muscular dystrophy,” Chicago Core Regional Manager August Nall said. “The Care Coordination team communicated the family’s needs at the right time to the right people and they were able to secure a service the family wanted.”

Great work, Rita and Maria!