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!

 

Award honors five who’ve made a difference in the lives of children with special healthcare needs.

Four professionals and one vendor who provide extraordinary care and services for children with special healthcare needs across the state have received the Champions for Children award from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

The Champions for Children award started in 2005 to recognize exceptional individuals who work with DSCC staff to improve the lives of Illinois children with special healthcare needs and their families. Staff members from DSCC’s regional offices across the state nominate individuals and vendors for the award. The 2016 honorees are:

Tracy Carlen of Eastern Illinois Area of Special Education

Carlen was inspired to become a physical therapist after watching a home therapist work with her young disabled sister before she passed away. “I could see the results of how therapy could benefit a child,” she said. “I like to instill in the child that if they work hard and try, they can do more than they can imagine.” For nearly 25 years, Carlen has encouraged DSCC children in eastern Illinois schools and ensured they have the right equipment and services they need to thrive. Her assistance goes beyond her role as a physical therapy assistant. When one DSCC child needed a way to do stretching exercises during the school day to prevent another surgery for his tight muscles, Carlen worked with the school to have the agriculture class build a stretching box. Carlen also partners with DSCC staff in the Olney Regional Office to let them know when DSCC children need repairs or upgrades with their orthotic equipment. Her strong relationship with students and deep knowledge of their needs also make her a valuable member of students’ individualized education program teams, staff says.

Ashley Earles of Community Connection Point in Springfield

Childcare for special needs children can be difficult to find. As a community engagement specialist at Community Connection Point, Earles puts central Illinois DSCC families in touch with high quality, affordable childcare providers who can meet their children’s specialized needs. Earles helps families navigate the childcare system and provides much-needed support every step of the way. Earles is also a trusted source of information about available community resources for Springfield Regional Office staff. She has helped fulfill a number of unmet needs for their families, such as finding a program to help cover the cost of diapers for a child not eligible for other assistance. Earles has worked in the early childhood field for almost 18 years and is now co-president for the Capitol Area Association for the Education of Young Children. She also has her instructor certificate for Adult and Youth Mental Health First Aid. “I am driven knowing that I live in a community that works alongside others to ensure our families have what they need to be successful,” Earles said.

Margatie Transportation, Inc., of Western Springs

DSCC staff can always count on Margatie Transportation to fulfill urgent travel needs for children in Kankakee County who need access to specialty care in the Chicago area. John M. McCarty, owner and president, started the company in 1989 and has since transported individuals in need of various therapies throughout the Chicago area as well as southern Wisconsin and northwest Indiana. The company’s willingness to help and top-notch vehicles and equipment for transporting wheelchairs make it a trusted service provider for DSCC families. Margatie Transportation offers reasonable rates that DSCC is able to cover for financially eligible families, and the company does not charge any additional fee for the guardian accompanying the child. Champaign Regional Office employees refer to McCarty as “our hero” and note that he even arranged travel plans for a family using his personal cell phone while off duty.  “It is our mission to make sure that our littlest clients and their families receive the most compassionate, courteous and efficient service from our company,” McCarty said.

Cindy Parmley of JAMP Special Education Services in southern Illinois

Parmley has provided pediatric physical therapy in the state’s southern counties for 24 years and is currently a physical therapy assistant in the Johnson County school districts. DSCC staff says Parmley makes therapy a fun and engaging experience for children and is a great motivator for parents as well. She accompanies parents on doctor’s appointments to strengthen their voice and explain what therapy is working best for their child. Parmley has spearheaded an effort with Marion staff to make the playgrounds at two local schools wheelchair-accessible for the DSCC students and others who attend. Through her volunteer work as the Special Olympic athletic director/coach for Goreville and New Simpson Hill schools, Parmley found ways to modify equipment and activities so DSCC clients with severe disabilities are able to participate in Special Olympic events. “Working with children has always been my passion,” she said. “Children with special needs provide an outlook on life we adults often overlook or take for granted.”

Laura Snyder of Mid-State Special Education in central Illinois

As a Transition Specialist, Snyder helps DSCC families in Montgomery and northern Macoupin counties prepare for their child’s transition to adulthood. This area is mostly rural with large pockets of low-income families and limited access to transportation services and employment/community agency resources. Local DSCC families often worry their child won’t have access to sufficient supports and resources as an adult. Snyder organizes an annual transition conference and agency fair each spring that addresses topics such as available home service programs, equipment loan programs, special education rights and alternative living options. She also coordinates vendor booths to give parents a “one-stop shopping locale” to learn about services and talk with providers who they would have trouble accessing otherwise.  DSCC St. Clair Regional Office staff says the information and convenience is a huge help to their families as they plan for their child’s future.  “I have an opportunity to help people with disabilities become productive and integrated members of their local community,” Snyder said. “I feel honored to provide assistance to students as they transition from school to their post-school plans.”

Violet Wiker will build relationships and give families a voice.

Executive Director Thomas Jerkovitz is pleased to introduce Violet Wiker as the new Family Liaison for the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

“Families should be partners in all aspects of their child’s health care, and their input is critical to help us strengthen this partnership,” he said. “Violet is a dedicated professional who will do a wonderful job connecting with families.”

Violet has worked at DSCC for three years. She first started as a Program Coordinator Assistant for both the Core and Home Care programs in the Springfield Regional Office. Violet later was promoted to the role of Medical Social Associate, providing care coordination services to families with children that have special healthcare needs.

As Family Liaison, Violet will help DSCC staff and administration better understand the needs of the families they serve. She also will reinvigorate the Family Advisory Council, a group of family members from across the state who meets periodically to give their perspective on DSCC’s planning, implementation and evaluation of care coordination activities.

“Building relationships with people is what I find most rewarding,” she said.

Violet will travel all over the state to meet with families and community members and will use electronic, social and traditional media to keep parents informed of DSCC updates. She will also conduct education programs for both families and DSCC staff.

Helpful instructions for how to create an IEP binder for your child.

Understood.org features an effective way that you can organize your child’s individualized education program (IEP) materials to better track progress and improve communication with their IEP team. A parent advocate and former teacher gives step-by-step instructions for how to create an IEP binder that sorts your child’s evaluation reports, IEP, report cards and other paperwork.

The article includes an IEP binder checklist, school contact sheet, parent-school communication log and IEP goal tracker that you can download and print for your own binder.

Read more here.

Your child will still receive the same vaccinations, but your provider will bill your All Kids insurance differently.

The Illinois Department of Pubic Health announced changes coming to the way providers bill insurance for vaccinations. Although families should not see a change in the vaccinations your child receives, it will change the way providers are reimbursed for those vaccinations.

If your provider has any questions about how to bill for your child’s vaccinations, please have them call the Illinois Department of Public Health at (217) 786-7500.

View the provider notice.