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

Many families across the state depend on their children’s schools to provide regular, healthy meals. The Illinois State Board of Education manages the Summer Meals program to ensure children have continued access to free and nutritious meals and snacks during the summer months when school is out.

The program serves children and teens age 18 and younger.

To find a meal site near you, call (800) 359-2163, text “FoodIL” or “ComidasIL” to 877-877, or visit SummerMealsIllinois.org. The days and times of operation vary by site.

To learn more about this year’s Summer Meals program, click here.

“He is a modest, humble kid who always puts forth his best effort and rarely complains.”

Alex Killian is an involved eighth-grader at Gibson City Middle School who pours himself into his studies and extracurricular activities with passion and focus. But he’s not your typical middle school student. His teachers say they’re the ones who look up to him for his bravery and determination as he lives with cystic fibrosis (CF).

Alex was recently featured in WCIA 3 News “Kid to Know” series after his teachers recommended him for the honor.

He is a straight-A student who loves math, science and history. He enjoys playing in the local soccer league and has been an active member of the GCMS Scholastic Bowl team for the past three years. Alex went to state for the geography bee and won every single competition in that event for two years in a row. He also participates in summer and winter theater productions from a local theater group called A.C.T. and tried his hand at track and field this spring.

“He is a modest, humble kid who always puts forth his best effort and rarely complains,” his mother, Andrea Killian, said.

Therefore, many are surprised to learn that Alex was born with CF, a disorder in which a defective gene causes thick mucus to buildup in the lungs, pancreas and other organs. This buildup causes persistent lung infections and restricts breathing as the disease progresses.

Alex was diagnosed with CF in December 2003 and the counselor at the family’s CF Clinic in Peoria suggested the Killians consider enrolling with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

“We’ve been working with DSCC ever since and have had a very positive experience. We have typically qualified for copay assistance and over the years, that has been a huge help with prescriptions as Alex takes several medications and even the copays become rather costly,” Andrea said.

The Killians recently began working with their second DSCC Care Coordinator, Angel, and say she’s been a huge help in addressing Alex and his family’s needs.

In 2015, Alex was selected for the Make-A-Wish Program and chose to travel to Ireland with his whole family. The family made the trip over spring break 2016. That May, he was hospitalized for the first time and received a peripherally inserted central catheter (PICC) line. He was able to finish the school year with a 20-day round of IV antibiotics at home.

“He was so disappointed to miss the last few weeks of school, but again, he took the changes in stride, completed all his homework and made it to school for the last couple of days with his IV in place,” Andrea said.

This past winter, Alex was asked to speak about his experiences with CF at his school’s “GRIT” assembly, which features students speaking about challenges they face in their daily lives.

Andrea says Alex takes an active role in his CF care by helping to clean and disinfect his nebulizer cups and by doing his treatments and taking his medications on his own. Currently, he does chest therapy via a vest that shakes him twice a day for 30-minute periods. He also does a minimum of four nebulizer treatments per day and takes several medications in pill form.

In addition to excelling at school and his extracurricular activities, Alex is also a great big brother to three younger siblings and is a huge help to his parents at home, Andrea said.

Congratulations on all of your achievements, Alex! We’re excited to see what you accomplish next.

News story captures Trinity’s special send-off to Disney World.

Trinity Alston always wanted to be a princess. Thanks to Make-A-Wish, she and her family recently traveled to “The Most Magical Place on Earth” to make her dream come true.

Trinity, 15, has a structural defect in her brain called Chiari malformation, which causes brain tissue to extend into her spinal canal. She is quadriplegic and non-verbal and uses a computer to speak with her family and caretakers.

Rockford’s 23 WIFR news station covered the community’s special send-off for Trinity, including a motorcycle escort, before she and her relatives boarded a plane to Disney World in April.

For nearly 10 years, Trinity and her family have received support through the Home Care Program, operated by the University of Illinois at Chicago’s Division of Specialized Care for Children on behalf of the Illinois Department of Healthcare and Family Services.

We are thrilled to see Trinity receive the royal treatment she deserves!

A variety of camping experiences are available across the state for children of all needs and abilities.

Summer is just around the corner and the search begins for fun and educational activities to keep children’s minds and bodies engaged during the break from school.

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 2017 summer camp activities is available here.

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

 

 

Initiative aims to improve employment opportunities for people with disabilities.

Equip for Equality’s Employment Rights Helpline is a new service that provides free advice for employees and job seekers in Illinois. This initiative, made possible by a grant from The Chicago Community Trust, aims to expand employment opportunities for people with disabilities in Illinois.

The helpline staff can:

• Discuss your rights under the ADA
• Answer your employment rights questions
• Assist with reasonable accommodation requests
• Help you understand your options
• Share fact sheets, sample letters and forms
• Provide referrals
• Offer other assistance as needed

Contact information for the helpline:
Voice/Relay: (844) RIGHTS-9 (toll-free) or (844) 744-4879 (toll-free)
TTY: (800) 610-2779 (tty)
Email: employment@equipforequality.org
Web: http://www.equipforequality.org/employment

Comments for the medically fragile, technology dependent waiver renewal are due May 6.

The state invites families to provide their input for the renewal of 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).

Families who would like to view the waiver may do so in one of two ways:

1. Electronically through the HFS website at https://www.illinois.gov/hfs/MedicalClients/HCBS/Pages/default.aspx. (Scroll down to “People who are Medically Fragile, Technology Dependent” and click on “Draft Copy of Proposed Waiver.”)
2. Hard copy available at one of the HFS offices located at:
   Healthcare and Family Services
   201 South Grand Avenue East
   Springfield, IL 62763
   OR
   Healthcare and Family Services
   401 South Clinton
   Chicago, IL 60607

Comments must be submitted through May 6. 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 Manager
   201 South Grand Avenue East, 2nd Floor
   Springfield, IL 62763

The Notice of Public Information can be found on the HFS webpage at https://www.illinois.gov/hfs/SiteCollectionDocuments/4517MFTDPublicNotice.pdf.

Please direct any questions to HFS at the address listed above.

Below is a summary of the proposed changes in the renewal:

1. Modifying processes related to Participant Centered Planning (PCP) in accordance the Centers for Medicare and Medicaid Services (CMS) published final regulations that pertain to Home and Community-Based Services (HCBS) programs, including 1915 (c) , 1915 (i) and 1915(k) as described in 42 CFR 441.301(c) (4) (5) and 441.710(a) (1) (2). The modifications enable waiver participants and families to direct the planning process, include representative(s) whom they have freely chosen, resulting in a person-centered plan with individually identified goals and preferences; defined outcomes in the most integrated community setting, and the delivery of services in a manner that reflects personal preferences and choices and assurances of health and welfare. Language reflecting Participant Centered Planning is reflected in Appendix D.
2. Removing Medically Supervised Day Care as a waiver service. This service has been in the waiver since its inception and has never been used. There are no licensed medically supervised day care providers in Illinois.
3. Updating performance measures to comply with federal CMS March 2014 guidance.

Illinois Sound Beginnings is the online destination for the Illinois Early Hearing Detection and Intervention (EHDI) Program.

Illinois EHDI works with parents and providers to ensure all babies are screened for hearing loss no later than 1 month of age; all infants who do not pass their hearing test receive a diagnostic evaluation no later than 3 months of age; and all infants with a hearing loss enroll in early intervention services no later than 6 months of age. The program partners with the University of Illinois at Chicago’s Division of Specialized Care for Children, the Illinois Department of Public Health and the Illinois Department of Human Services.

The program’s website at http://www.illinoissoundbeginnings.org/received the Website of the Year award during the 2017 EHDI Annual Meeting on Feb. 26-28 in Atlanta, Georgia.

The site includes resources for families and professionals, including information about diagnostic testing, screenings, hearing aids and cochlear implant options, and parent support.

Congratulations, Illinois EHDI!

 

 

Pilot study of barriers to and promising practices for the inclusion of diverse families in a peer support program.

Parents of children with disabilities benefit from receiving support from other parents who have a child like theirs, but parents from culturally diverse backgrounds are not well-represented in peer support programs.

This focus group study seeks to find the barriers to participation and promising practices to include culturally diverse parents in peer support programs so that they can access this type of support.

Eligible participants are parents of a child with a disability between the ages of 5 and 10 who identify as black/African American, Latino/Hispanic, Asian, Middle Eastern or refugee.

Participating parents will fill out surveys and be interviewed in a small group. The focus group will take place at 1640 W. Roosevelt Road in Chicago.

For more information, contact Robin Dodds, Postdoctoral Research Associate in the University of Illinois at Chicago’s Department of Disability and Human Development, at rldodds@uic.edu or (312) 413-1536.

Video of Madison Austin’s Hokey Pokey party with her PICU nurses goes viral.

A little fun can go a long way to brighten the day of a seriously ill child.

Four-year-old Madison Austin’s pure delight to host a special Hokey Pokey Party with her nurses at HSHS St. John’s Children’s Hospital has taken the internet by storm and melted countless hearts worldwide.

Madison was born with a rare birth defect called Neuronal Migration Disorder, which has caused low muscle tone in her body and narrowed airways in her lungs. She and her family receive support through the Home Care Program, operated by the University of Illinois at Chicago’s Division of Specialized Care for Children on behalf of the Illinois Department of Healthcare and Family Services.

Madison has a tracheostomy tube and has required several hospitalizations at St. John’s in her short life. In February, she was admitted to the pediatric intensive care unit with breathing complications from the flu and other illnesses.

To help lift her spirits, Madison’s nurses happily agreed to dance along to her favorite song, the Hokey Pokey. Her mother, Krista, posted a video of the dance party to her Facebook page. It soon went viral and has since appeared on numerous media outlets, including local newscasts across the country, the Today Show and ellenNation.

The Hokey Pokey party became a daily occurrence for Madison and her nurses, and the Austin family expects to continue the dancing at home.

We hope Madison’s star continues to shine brightly and spread joy to others!

“He has a very bright future in front of him.”

At only 14 years old, Nathan “Nate” Wells is no stranger to major surgery.

The teen was born with hypoplastic left heart syndrome, a congenital heart defect in which the left side of his heart failed to form correctly and could not properly pump oxygen-rich blood through his body.

The condition made breathing and strenuous activity difficult for Nate, and he required multiple surgeries to help improve his heart’s blood flow.

On Nov. 9, Nate underwent his seventh open-chest surgery. This time, he received a new heart.

“He’s only lived with two chambers (of the heart) pumping, instead of four like you and I have,” his mother, Karen, said. “If we didn’t do this transplant, there would be issues with his other organs.”

The transplant was ultimately a success and Nate now continues to recover and receive plenty of support from the Villa Grove community, as detailed in a WCIA 3 News story.

“We’ve had a very good support system,” Karen said. “That’s what’s pulled us through the most.”

Nate enrolled in the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) program in 2009 after a procedure to repair one of his heart valves failed.

“He had a stroke and seizures at that point, so we knew we’d need additional care that was more than what we had had in the past,” Karen said. “He would need physical and occupational therapy and additional medications than what we were used to, and he would require at-home oxygen.”

A hospital social worker encouraged the family to contact DSCC, and Karen says they are grateful they did.

“(DSCC) has been great over the last seven years. It’s wonderful what (the program has) been able to help with,” Karen said, noting DSCC staff’s medical expertise and willingness to assist with any questions or concerns the family has.

This support was crucial as Nate and his family fought to keep him healthy.

The stress of his heart pumping with only two chambers began to take its toll in recent years, and the family was able to meet with a heart transplant team last summer. After an extensive evaluation, Nate was approved for the transplant and received the call on Nov. 8 to travel to St. Louis for surgery the next morning.

The procedure was the toughest that Nate has been through and there were some frightening complications immediately after the surgery. But Karen said their family had strong faith and after five weeks in the hospital, Nate arrived home just in time for Christmas.

“Knowing how he is such a fighter, we knew he’d be able to use this heart to the fullest extent,” Karen said. “We hadn’t fought for 14 years to keep him here just so he couldn’t keep this new heart.”

So far, Nate’s body has accepted the new heart well and he’s shown great progress during the cardiac rehabilitation program he’s started three times a week. He’s also anxious to start school once flu season is over.

“If he takes care of himself, takes his medication, exercises and eats right, this heart should last him 20 years or more,” Karen said. “For everything that he has been through, he’s a very bright young child with a lot of potential, if he applies himself. He has a very bright future in front of him.”