DSCC Care Coordinator partnered with Mount Vernon Lion’s Club to make the gift a reality.

Fifteen-year-old Allie Riley of Mount Vernon wanted a bicycle of her own so she could go on rides with her family and friends. A traditional bicycle, however, was not a safe option for Allie as she is visually impaired and has problems with her depth perception.

Allie’s mother, Melinda, did some research and found some tricycle options for Allie but couldn’t afford the price tag. Melinda went to the family’s Care Coordinator, Donis Vail, from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for help.

Allie has been enrolled with DSCC since she was an infant. Donis, who works in DSCC’s Olney Regional Office, used her community connections to find funding for the tricycle and pull off a sweet surprise for Allie.

Knowing that Allie is a big fan of musician Jimmy Buffett, Donis found a Buffett-themed adult tricycle that’s cream with green tires, a green seat and a parrot-shaped bike horn. She then started researching funding options. When she reached out to the Mount Vernon Lions Club, they offered to pay the entire cost of the tricycle.

Donis and the Lions Club then invited Allie and Melinda to the club’s meeting last month to surprise her with the tricycle. Melinda told Allie that they were going to a bank meeting so she wouldn’t suspect.

When Allie arrived and saw her new tricycle, she was “over the moon,” Melinda reports. Allie also immediately stipulated that her new wheels are not merely a tricycle but a “beach bike.”

Our Care Coordinators are pros at identifying a family’s needs and working with local community organizations to connect the family and youth with the services and resources that can help. The Mount Vernon Lions Club’s generous donation is a wonderful example of these connections and how much they benefit our participants.

A huge thank you to all involved, and happy riding, Allie!

The Ruder family designed and donated special “rocket pack” Radio Flyer wagons for children who depend on medical equipment.

Kara and Logan Ruder understand how difficult it can be to care for and transport a technology-dependent child.

Their 3-year-old twins, Beau and Brooklyn, were born 12 weeks premature. While Brooklyn grew to be healthy, Beau was diagnosed with chronic lung disease and a combination of four heart defects called tetralogy of Fallot.

Beau spent seven months total in intensive care at OSF HealthCare Children’s Hospital of Illinois. During that time, he became enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC), which has helped the Ruders understand and maximize Beau’s insurance coverage and connected them to service providers, such as nursing agencies and durable medical equipment suppliers.

Once Beau arrived home, Logan jokes that his son “brought half the hospital” with him. Since he requires round-the-clock oxygen through a nasal cannula, Beau needs an oxygen tank as well as a monitor, suction machine, medicine pump and feeding pump for his gastronomy tube

It was overwhelming for the family to try to leave the house, especially when Kara would have to take both kids to Beau’s many medical appointments. A stroller just couldn’t comfortably hold all of the equipment and keep it accessible for when Beau needed it.

The inspiration for a better way struck after the twins received a Radio Flyer wagon for their first birthday. Logan developed a special attachment for the wagon to hold Beau’s oxygen tank and still give him plenty of room. The Ruders describe how the design came about in a touching video for OSF HealthCare Children’s Hospital of Illinois.

The wagon’s “rocket pack” was such a hit with Beau and others who saw it, the Ruder family decided to make additional wagons to donate to Children’s Hospital of Illinois. You can read more about the family’s story and their donation in the hospital’s Children First publication.

“When you’re a dad like me who’s not overly medical, there’s not much you can do for a kid like (Beau) who’s so sick,” Logan said. “To have something like this (wagon) that I can do for him, it makes me feel good.”

He would love to create more wagons for children who could benefit from one and encourages interested families to call him at (309) 360-3410.

Logan said he hopes the wagons can give children in similar situations a feeling of normalcy.

“When you pull a kid through the hospital in a wagon, it helps them feel like a kid,” he said.

We’re proud of the Ruder family’s kind hearts and desire to help other children with complex medical needs. They truly are an inspiration!

The American Red Cross is installing free smoke alarms as part of its Home Fire Campaign.

The American Red Cross and its partners have launched the Home Fire Campaign to reduce deaths and injuries caused by home fires by 25 percent over five years. The American Red Cross asks every household in America to take two simple steps to help save lives: check or install smoke alarms and practice fire drills at home.

As part of this effort, the Red Cross will provide and install smoke alarms in your home at no charge. To request a free installation, you can fill out this form and return to Jamie Beaver, Disaster Program Manager, at 2674 N. Main St. in Decatur or Jamie.Beaver@redcross.org.

You can also request a free smoke alarm installation at https://getasmokealarm.org/. After submitting your request, an American Red Cross representative will be in touch with information on installation availability in your area.

 

 

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!