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.

Learn more about your rights and options with USAGov’s Guide for Voters with a Disability.

Election Day is right around the corner. Do you know if your polling place is accessible? Do you need accommodations?

USAGov has developed a step-by-step guide to help you plan accordingly and know your rights before heading to the polls.

The Guide for Voters with a Disability provides helpful suggestions, including calling your local elections office in advance to find out what accessible accommodations are available at your polling place.

You can also go to Vote.gov to register to vote or check if your registration is up-to-date

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!

 

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.

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• 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!