Families and professionals from around Illinois attended the annual Stepping Stones of Transition Conference to improve outcomes for transition-age youth with disabilities.

More than 550 families and professionals gathered at the 15th annual Illinois Statewide Transition Conference to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The conference, titled “Stepping Stones of Transition,” took place Oct. 17-18 in Collinsville.

The event targets adolescents, parents, caretakers, vocational professionals, healthcare professionals, educators and others involved with improving outcomes for transition-age youth with special needs. 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 23 participant families 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.

Lily Dining is the mother of 14-year-old Paulina, a participant in DSCC’s program. This year’s conference was their first time attending.

“We have learned so much, to the point where I don’t know what I want to do first. It’s been so informative and we are well taken care of,” Lily said of DSCC paying for their conference fees and hotel stay.

Lily appreciated that DSCC made sure Paulina, who uses a wheelchair, had an accessible hotel room.

“Everything was so smooth and well-organized.,” she said. “I was free to just learn and not have to worry about how I was going to pay for it.”

Nineteen-year-old DSCC participant Joy attended the conference with her aunt Cecilia. They found several breakout sessions helpful as Joy begins to plan to enter the workforce. Cecilia said she’s eager to work with Joy to identify her strengths and pinpoint jobs that would be a good match.

Joy and Cecilia also enjoyed attending a special meet-and-greet for DSCC families and staff who were at this year’s conference.

The conference consisted of informative breakout sessions in the areas of:

• Independent Living
• Education and Training
• Employment
• Community Integration
• Health Care
• Self-Advocacy

DSCC participant Collin Monical, 18, attended the conference with his parents. His father, Greg, said each person in their group had different perspectives about transition and found sessions that addressed each of their interests and concerns.

Greg said most of his selected sessions involved help with government programs.

“I was not only impressed with the educational benefits of governmental programs. The human aspects presented through these talks were most enlightening,” he said.

Greg said he was particularly inspired by keynote speaker LeDerick Horne, who discussed his own experiences growing up with a learning disability. LeDerick is now a disability advocate, motivational speaker and spoken-word poet.

“Hearing these positive stories is just incredible… As parents, we tend to see a lot of the negative about disability. Every once in a while, you have to step back to see how far our children really have come,” Greg said.

“We will dwell on the materials presented from the conference for a long while. I believe that we now know more about what is out there and could perhaps ask more pointed questions in the future. Thank you so very much for the assistance provided to make this into a reality.”

More than 20 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 Family Advisory Council member Joyce Clay, who is a professor of nursing at Richland Community College, presented a breakout session on the “The Joys and Challenges of Medical Transition.” Joyce shared her experiences with her own daughter’s complex medical needs and the strategies she has learned to enhance the transition process as her daughter moved from the pediatric to adult setting.

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.

“This year’s conference was a great success helping improve transition outcomes for youth with disabilities/special healthcare needs,” DSCC Statewide Transition Coordinator Darcy Contri said. “I am so happy to have had the opportunity to be involved for the 15 years that DSCC has helped host this conference. It just keeps getting better each year.”

Visit DSCC’s Facebook page to see photos and more information about this year’s conference

Free Santa Experiences welcome children of all ages and abilities!

Autism Speaks is once again partnering with Cherry Hill Programs this holiday season to provide free, sensory-friendly Santa Experiences for families across the country.

All families of children with autism and other special needs can enjoy a visit with Santa in a more subdued and calm environment.

Santa stops in Illinois begin Nov. 24 and are scheduled for communities including:

• Aurora
• Champaign
• Chicago
• Chicago Ridge
• Fairview Heights
• Gurnee
• Joliet
• Lombard
• Moline
• Northbrook
• Oak Brook
• Orland Park
• Schaumburg
• South Barrington
• Springfield
• Rosemont
• Vernon Hills
• West Dundee

You can visit the Autism Speaks website to search for Santa Photo Experiences in your area and reserve your spot.

Sensory-friendly Santa events are free and keepsake photo packages will be available for purchase.

If you have questions or problems registering, email autismspeaksu@autismspeaks.org.

For more Santa visits and other holiday events for children with special healthcare needs in Illinois, be sure to check our Events page.

Chicago Home Care Regional Office’s Yesenia Bustamante honored for outstanding service to children with special healthcare needs.

Yesenia Bustamante is the 2019 recipient of the Award of Merit from the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). The award recognizes exceptional employees for outstanding dedication and service to children with special healthcare needs.

Bustamante is an Enrollment Assistant with DSCC’s Home Care Enrollment Team. This statewide team serves as a family’s first introduction to the Home Care Program. The program supports families who care for children and young adults who are medically fragile and require skilled in-home shift nursing.

Yesenia works at the Chicago Home Care Regional Office. Her colleagues say she is an indispensable team member who is dependable, motivational and passionate about serving DSCC’s participants and families. Yesenia often goes on home visits to provide Spanish interpretation services and frequently rearranges her schedule to be available to meet with families.

“Yesenia is highly organized and keeps her colleagues on task while ensuring our participants’ needs are at the center of what we do,” DSCC Executive Director Thomas Jerkovitz said. “She leads by example and shows the utmost empathy and care for each Home Care participant and family’s situation.”

After 15 years at DSCC, Yesenia says she loves the feeling of helping a family in need.

“Throughout the course of my tenure at DSCC, it has been a privilege and an honor to work on behalf of our families and participants to ensure that they have access to much-needed resources to assist them with maintaining daily life within their respective communities,” Yesenia said. “It is amazing and inspiring to see so many caring individuals come together as one to carry out DSCC’s mission to partner, help and connect families to services and resources.”

DSCC staff nominated a total of thirteen of our colleagues for this year’s Award of Merit. As the winner, Yesenia receives an Award of Merit memento, a $2,000 award and recognition from the Executive Director.

The other 2019 nominees are:

• Stephanie Alumbaugh, Champaign Regional Office
• Amy Cunningham, Rockford Regional Office
• Kim Firkins, Lombard Regional Office
• Jane Gowans, Mokena Regional Office
• Andrea Hoskinson, Central Administrative Office in Springfield
• Tiffany Kalka, Central Administrative Office in Springfield
• Roxane Lowry, Champaign Regional Office
• Charmaine McGovern, Lombard Regional Office
• Amy Nixon, Central Administrative Office in Springfield
• Brittani Provost, Champaign Regional Office
• Brenda Solomon, Central Administrative Office in Springfield
• Violet Wiker, Central Administrative Office in Springfield

Congratulations, Yesenia! And a big thank you to all of the nominees for their excellence on behalf of our participants and families!

Makenzie Hardesty continues to thrive while living with a rare terminal disease.

Like many mothers on graduation day, Andrea Lancaster cried tears of joy as she watched her daughter Makenzie Hardesty receive her high school diploma.

It’s a milestone that once seemed out of reach.

The 18-year-old Normal Community West High School student has mucopolysaccharidosis (MPS) type VI. It’s a rare terminal illness that affects many organs and body functions. Her younger sister Isabella has the same disease.

“Quite honestly, I didn’t expect them to live this long. At first I was told age 5, and then it was 13 and then it was, ‘We don’t know,’” Andrea said of her daughters’ prognosis. “We’ve been doing a lot to make sure they can stay here as long as possible.”

For Makenzie, these efforts meant numerous childhood surgeries and 12-plus years of lengthy enzyme replacement therapy treatments each week.

Through it all, she continued to work hard and balance school work with her medical demands.

She graduated May 25. Two local television stations covered her story.

“Do the best you can”

Makenzie said her mantra has been, “do your work and do the best you can, always.”

It’s a simple work ethic that can provide hope to many living with rare and terminal diseases.

“Something I want more people to see is that Makenzie and Bella are still living and striving with MPS, even later on in life than what was expected,” Andrea said.

MPS Type VI is a lysosomal storage disorder. Makenzie and Isabella lack an enzyme needed to break down a certain form of sugar, so it builds up in the body. For the Hardesty sisters, it affects their airways, eyes, hearing and joints. It also causes small stature.

Makenzie has had a tracheostomy tube since she was 6 years old and needed in-home shift nursing for most of her life. She’s been enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) for 13 years.

Both she and Isabella undergo enzyme replacement therapy treatment at Children’s Hospital of Illinois once a week for about six hours to help combat the effects of their illness. The lengthy treatments meant she missed one day of school each week.

Makenzie says she would get her homework assignments the day before her therapy treatments. While receiving her therapy, she’d work on schoolwork with a teacher from the hospital’s pediatric school.

“I’m very proud of her,” Andrea told WICS ABC Newschannel 20. “No matter what surgery she’s had, no matter what she’s been through, she did it with A’s and B’s and no missed assignments.”

“You can make it”

As tough as living with MPS Type VI can be, Makenzie said her condition could be much worse, so she tries to focus on what she can do.

“I don’t let that affect me because I do stuff that I like to do, and I don’t let my disorder get to me,” she told WEEK 25 News.

During high school, Makenzie discovered a love of photography. She’s now looking into photography courses through the New York Institute of Photography.

Makenzie’s current doctors say she still needs 24/7 care from a shift nurse and/or family member due to her tracheostomy tube. However, Andrea said her daughter has become much more stable and less dependent on her trach.

The family is working with their DSCC Care Coordinator to transition to an adult pulmonologist who could help Makenzie reach her goal of becoming more independent in her care.

“I want to give her space to be an adult,” Andrea said.

She and Makenzie are also working with DSCC and the Department of Human Services to find out what adult services are available as she navigates life post-high school.

Makenzie encourages other DSCC participants who are starting high school to not be shy and use their voice to speak up or ask a question.

She also stresses the importance of hard work and perseverance.

“I didn’t think I was going to get through it but I’m like, ‘Hey, I’m done. I passed a milestone.’ So if you’re fighting through something, you can make it,” Makenzie told WEEK 25 News.

The Seizure Smart School Act requires seizure action plans for students and training for school staff.

A new law aims to help schools better support the needs of students with epilepsy.

All Illinois school staff must be trained in seizure first aid under the Seizure Smart School Act.

The act, which was signed into law this month, takes effect July 1, 2020.

The law also requires parents of students with epilepsy to submit a seizure action plan to their child’s school.

Illinois is now one of four states to pass Seizure Safe School legislation, according to the Epilepsy Foundation of America.

“Each year, the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) serves hundreds of Illinois children with some form of epilepsy,” DSCC Executive Director Thomas Jerkovitz said. “Our staff is ready to partner with parents and school personnel to make sure these children stay safe and well-supported throughout the school day.”

Under the law, a seizure action plan describes the services that a student with epilepsy needs at school and at school-sponsored activities. It should include instructions from the child’s healthcare provider and a copy of any prescriptions and how to give them to the student.

The plan also identifies a “delegated care aid,” who is a trained school employee who can help the student with their seizure action plan.

Families of children with epilepsy who are DSCC participants can talk to their Care Coordinator for help putting together a seizure action plan.

DSCC Care Coordinators can also attend school meetings with families to make sure their child’s educational, social and medical needs are being met.

The Seizure Smart School Act also requires all school employees to complete seizure recognition and first-aid response training.

Read the full text of the law for more details.

The Epilepsy Foundation of America states that about 500,000 children – approximately six in 1,000 – live with epilepsy and seizures. It is the fourth most common neurological disorder in the country and is characterized by recurrent and unpredictable seizures that affect a variety of mental and physical functions.

Original drawings will be featured in DSCC’s new collection of greeting cards.

Calling Illinois artists of all ages!

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is seeking artwork for our collection of greeting cards. The cards will be sent to our participants, providers and community partners.

Who is eligible?

The contest is open to Illinois residents of all ages. Artists can choose any or all of the six greeting card templates and illustrate what each theme means to them. Creativity is encouraged!

Each template is two pages and 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.

You may click on each template link below to print them out and personalize:

• Congratulations
• Get Well
• Happy Birthday
• Happy Holidays
• Thank You
• With Sympathy

You may also call DSCC at (800) 322-3722 to have templates sent to your home.

How to submit:

Artwork and a signed release should be submitted to DSCC by Sept. 15, 2019.

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 Oct. 15, 2019, will be considered for the greeting cards. Be sure to visit our page, vote and share!

The greeting cards will be given away for promotional purposes and will not be sold. Winners will have a set of greeting cards mailed to the address provided.

Families gain knowledge, resources and friendships during the 2019 Institute for Parents of Preschool Children who are Deaf or Hard of Hearing.

When Leticia Hubart learned about the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing, she knew she must attend.

Her 4-year-old son, Liam, was just diagnosed with hearing loss in December after showing behavioral issues.

“Hearing loss was not on my radar. I dove right into educating myself,” she said.

Leticia, Liam and his big sister, Teagen, traveled from Rock Island to the Illinois School for the Deaf campus in Jacksonville to attend the Institute. They joined 33 other families from across the state for the weeklong program from June 9-14.

“It’s changed my world,” Leticia said of the experience. “It opened my eyes to the diversity of hearing loss. It’s not a doom-and-gloom kind of diagnosis. He’s going to be OK, and I’m going to be the best advocate I can be for him.”

The Institute provides support and valuable information on communication options, language development, amplification, social-emotional development and school programs. There is no cost to participating families.

A common link

UIC’s Division of Specialized Care for Children (DSCC) supports the Institute, along with other sponsors.

This year’s Institute was the largest on record, with 34 participant children enrolled and a total of 119 people attending from 31 families.

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
• Assistive communication devices
• Deaf culture
• School programming

Other activities include meeting in small groups to discuss specific concerns and connecting with other caregivers. Parents are also able to have a night out together without their children.

During the Institute, children attend classrooms based on their age group. Experienced teachers of children who are deaf or hard of hearing oversee these classrooms.

Attending children 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 and participate in fun and educational activities, including art projects and learning to sign. This year’s sibling program had 30 children.

There is no cost for families to participate, and meals and housing are provided at no charge.

“I am very delighted that one common link that each of these families share is that each one of them is a DSCC family. I am so thankful to our DSCC staff for the extra work that was involved in getting each of these families ready for this weeklong experience,” DSCC Family Liaison Violet Wiker said.

A community ready to help

T.J. and Brianna Taylor of Macomb attended the Institute with their 11-month-old daughter, Larkin.

Larkin’s newborn hearing screenings were positive, suggesting she may have a problem hearing. She then underwent an Auditory Brainstem Response (ABR) test. She was diagnosed with bilateral sensorineural hearing loss and enrolled with DSCC and Early Intervention.

“She’s been in her element. She loves watching people sign,” T.J. said, noting Larkin has already mastered several basic signs herself.

The Taylors want to let Larkin choose her communication form and her assistive device as she gets older. T.J. said it’s been valuable for the couple to hear so many positive stories about different options.

Brianna said she also values the connection with other families.

“We all have different journeys but it’s nice to be able to relate to those different stories,” she said.

Lynsey Runyon attended with her 4-year-old son, Branson. She said she was impressed with the amount of information available during Institute.

Years of problems passed before Branson’s hearing loss was diagnosed in spring 2018. A few months later, Lynsey moved her family to Jacksonville so Branson could attend the Illinois School for the Deaf late last fall.

Lynsey said she often feels she is trying to play catch-up with learning about the world of hearing loss. She appreciated the Institute’s more in-depth lectures and workshops to explain topics in ways she could easily understand.

“I only wish we would have found out about this sooner,” she said.

Many of the attendees encouraged other parents to consider the Institute.

“Don’t be afraid to ask for help because you have a community that’s ready to be there and help you,” Leticia Hubart said. “Don’t’ be afraid to advocate for your child.”

Visit our Facebook page for photos from this year’s Institute.

For more information about the Institute for Parents of Preschool Children Who Are Deaf or Hard of Hearing and how DSCC supports children with hearing loss, call (800) 322-3722 or email dscc@uic.edu.

Visit our Facebook page for photos from this year’s Institute.

The following organizations supported the 2019 Institute:

• University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC)
• Department of Human Services (DHS) Division of Rehabilitation Services (DRS)
• Illinois School for the Deaf (ISD)
• Illinois State Board of Education (ISBE)
• Department of Public Health (DPH)
• Ann & Robert H. Lurie Children’s Hospital of Chicago

Division of Specialized Care for Children participant Trenten Jankuski has a special vacation and accessible home, thanks to Care Coordinator Angel Lawrence’s efforts.

Angel Lawrence is a Care Coordinator at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC). A big part of this job involves connecting families with the right services and resources to support their children with special healthcare needs. Sometimes, a seemingly simple connection can make a dream come true.

Such was the case for Trenten Jankuski, a 16-year-old DSCC participant with cerebral palsy.

More than two years ago, Angel started working closely with Trenten’s family to help make their home more accessible.

The Jankuskis live in a bi-level home. It made sense for Trenten’s therapy needs to move his living space to the home’s lower level. However, Trenten’s power wheelchair could not access the lower level.

Angel got to work seeking bids from vendors who could examine the house and determine what modifications would be necessary. Angel enlisted the help of UIC’s Assistive Technology Unit, which determined that an elevator would be the best option for the home and Trenten’s wheelchair. The elevator, however, would have a high price tag.

Angel then started checking for funding sources and grant opportunities. After months of effort, she helped the Jankuskis receive a grant from the Illinois Department of Rehabilitation Services to cover most of the elevator’s costs. Angel also contacted Make-A-Wish Illinois and the Illinois Elks Children’s Care Corporation to see if any assistance was available.

The Illinois Elks Children’s Care Corporation was able to provide the remaining funds needed for the elevator, which was installed in March.

But the Make-A-Wish Foundation took an interest in Trenten’s story and contacted his mother to set up an interview in February. A trip to Disney World for his whole family was soon in the works for the avid Disney fan.

On March 15, local Make-A-Wish granters met Trenten’s parents at his high school to surprise him and announce the special vacation would start that Sunday. The Kankakee Daily Journal newspaper was there to capture the fun announcement. You can read the Daily Journal’s coverage on the newspaper’s website.

Angel said she’s delighted to see Trenten, his parents and his siblings have this special getaway together.

“This is an opportunity for them as a family to really enjoy one another in a fun atmosphere, away from the reality of day-to-day life,” she said. “They can enjoy a real vacation.”

We’re grateful for Angel’s hard work to help this very deserving family. Congratulation to Trenten and all of the Jankuskis!

 

 

 

 

 

 

Molly Hofmann has been named an Emerging Nurse Leader in Illinois.

The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) is pleased to announce that our Associate Director Molly Hofmann is one of the 40 Under 40 Emerging Nurse Leaders in Illinois.

The Illinois Nurses Foundation sponsors this award, which highlights and celebrates young nurse leaders who are influencing health care and the nursing profession today.

Molly is an advanced practice registered nurse (APRN) who serves as DSCC’s Associate Director of Care Coordination. In this role, she oversees the development and implementation of all care coordination operations, policies and procedures for the Core and Home Care Programs.

Molly is also working on her doctorate of nursing practice degree through UIC’s College of Nursing in Peoria.

“This is a wonderful recognition of what she has accomplished in her young career. We are fortunate to have Molly as part of the DSCC Leadership Team,” DSCC Executive Director Thomas Jerkovitz said. “She lives our mission to partner, help and connect every day.”

Molly says she is passionate about the appropriate and comprehensive care of the pediatric patient and their family.

“I have seen the positive impact good care coordination can have for children and their families and am excited to be a part of a team with a mission to partner, help and connect families and the community,” she said.

Before joining DSCC in November 2016, Molly worked as an APRN at the Pediatric Resource Center in Peoria. The Pediatric Resource Center is a program of the  UIC College of Medicine in Peoria and affiliated with Children’s Hospital of Illinois (CHOI).

Her past experience also includes:

• Serving as an APN and clinic coordinator of the Trach/Vent Program at CHOI
• Performing clinical projects as a Six Sigma Black Belt
• Working as a registered nurse in pediatric intermediate care and the emergency department

Molly lives in Washington with her husband and two young daughters.

Molly and her fellow awardees will be honored on Sept. 12 at the Illinois Nurse Foundation’s award recognition event in Lisle.

Congratulations, Molly, on this well-deserved honor!