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.”

DSCC parent Gina Jones will work with families north of Interstate 80.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is proud to welcome a new part-time Family Liaison to the team. Gina Jones, a Chicago registered nurse and mother of two sons in the DSCC program, will help build relationships with families and explain their needs to DSCC administration and staff.

She joins Springfield-based Violet Wiker, who became DSCC’s full-time Family Liaison in December.  Gina will work out of the Chicago Administrative Office and be responsible for meeting with families and community members in the Chicago, Lombard, Mokena and Rockford areas. She will also help Violet reinvigorate the Family Advisory Council.

Gina has extensive experience with DSCC and representing families of children with special healthcare needs through her sons, Garrett, 19, and Gavin, 15. The young men were born with a rare genetic neurodevelopmental disorder called Pelizaeus-Merzbacher Disease that affects their vision and ability to eat, speak, breathe and move.  The family first learned of DSCC when Gavin was only 1 year old, and both he and Garrett now receive in-home skilled nursing through the program. (Read more about the Jones family here.)

Gina says she hopes to empower families like hers.

“I want to help families see the possibilities in disabilities,” Gina said. “Health care is a part of our life, but we can still lead an active and fulfilling lifestyle outside of that.”

As a registered nurse, Gina has worked in physical rehabilitation, labor and delivery and hospice. She is also dedicated to raising awareness about neurodevelopmental diseases, disabilities and their effects on families.

She is the family member trainee coordinator for the LEND (Leadership Education in Neurodevelopmental and related Disabilities) program at the University of Illinois at Chicago and is a community advisory board member for the Leadership for Urban Primary Care Education and Transformation (LUCENT) program at the University of Chicago. She has served on the board of trustees for the PMD Foundation and continues to be active in family support and fundraising for that organization. Additionally, Gina is involved with The Family Forum for Region 4 Midwest Genetics Collaborative.

Gina also created and chaired the Jones PMD Walk ‘n Roll, an annual fundraiser for Pelizaeus-Merzbacher Disease, for five years.

We are proud to release our organization’s first Annual Report.

The fiscal year 2016 Annual Report for the University of Illinois at Chicago’s Division of Specialized Care for Children covers July 1, 2015, through June 30, 2016.

It provides a comprehensive overview of our programs and how they help improve the lives of children with special healthcare needs and their families. The report includes personal stories from two of our families about how their care coordinators provided much-needed support and resources to help their child and family as a whole thrive. It also highlights how we support the outreach and educational mission of the University through our networking activities, community partnerships and internship opportunities.

We hope this document helps explain the difference that our care coordination makes and our commitment to children and families. We look forward to producing a new report each year to provide an ongoing update of the ways we evolve and improve to partner with healthcare systems and strengthen our relationships with families and communities.

Read more about the FY 2016 Annual Report here.

 

Habitat for Humanity of Champaign County helps family achieve home ownership.

The new year is off to a great start for one University of Illinois at Chicago’s Division of Specialized Care for Children family who has moved into an accessible new home of their own, thanks to Habitat for Humanity of Champaign County.

The house, which the family helped build, includes special railings and lower light switches for 7-year-old Russell, who has a rare disorder that stunts his growth and affects his vision and liver.

“This house will work out beautifully for him because we don’t know what to expect in the future, so hopefully he’ll grow,” Russell’s mom, Lori Empson, told WCIA 3 News.

Click here to watch the news story.

Congratulations to Russell and his family!