“DSCC understands the importance of supporting families and coordinating care.”

Dr. Shubhra Mukherjee, also known as Dr. Sue, is the medical director of pediatric and adolescent rehabilitation medicine at Shriners Children’s Chicago.

Mukherjee currently cares for patients up to age 22. Her background includes working with young adults with complex healthcare needs and collaborating across medical specialties to help these patients and their families connect with the care they need.

She has served on the Division of Specialized Care for Children’s (DSCC) Medical Advisory Board (MAB) for more than 16 years.

Mukherjee’s expertise in physical medicine and rehabilitation combined with a deep interest in the transition of care for children with complex healthcare needs has been a great fit.

“DSCC understands the importance of supporting families and coordinating care,” said Mukherjee. “I appreciate their statewide focus and how the MAB serves as an avenue for clinician input on what changes are needed, sharing feedback about the struggles we encounter helping patients get what they need, and working together to find solutions.”

Putting the Focus on Transition

When Mukherjee joined the board, schools were just beginning to explore the need to help students build the skills needed to transition to adulthood.

“They were looking at ways they could better prepare students to go on to jobs, college and life after high school,” Mukherjee explained. “In pediatric care, we realized that we needed to be doing the same thing for children with complex healthcare needs and their families.”

The DSCC team had the idea to increase the participation of medical professionals at the annual Illinois Statewide Transition Conference. We wanted to create a more proactive approach to helping children and their families make the transition from pediatric care to adulthood.

Mukherjee teamed up with DSCC’s former Title V Transition Specialist Darcy Contri to help put the idea into action.

“DSCC was already doing great work providing family support, tip sheets, and facilitating face-to-face conversations about transition. This was just one more piece of the puzzle,” said Mukherjee. “Darcy and I set up the first health care track for the Statewide Transition Conference with a goal of building more clinical engagement and increasing awareness and support for patients with complex health care needs and their families.”

The health care track has provided information and presentations with and for doctors and others providing complex care. According to Mukherjee, it continues to be a catalyst for building connections, sparking ideas, and inspiring healthcare professionals.

“I got to see that impact firsthand when one of our occupational therapists (OT) attended the conference with me,” Mukherjee said. “She was so moved that she became a big proponent of the OT’s role in developing and teaching adolescents skills related to health care.”

Opportunities to Collaborate

Mukherjee appreciates how the MAB fosters collaboration, networking and the development of partnerships. This work continues to create more options throughout Illinois for patients with complex care needs.

“It’s very rewarding to grow my knowledge and connect with like-minded professionals across so many different specialties,” Mukherjee said. “We’re able to share, provide feedback, and exchange ideas around removing barriers and supporting patients with complex healthcare needs at all stages.”

Mukherjee said DSCC also continues to be a major source of support for her own patients.

“Care coordination is so important for these families,” said Mukherjee. “DSCC helps them find the right care or specialist, get to appointments, and locate funding for the services they need to stay well and engage in their community. DSCC is there for the child and family.”

Mukherjee also leans on DSCC for updates and information.

“DSCC helps me keep track of program changes and learn about new services or programs that are available,” Mukherjee emphasized. “DSCC plays a vital role in sharing information and connecting the many different entities that individuals with complex needs depend on for their care.”

Awareness Brings Progress

Mukherjee said there is still a great need for education about the transition to adulthood and its importance.

“I’m glad to see the growing awareness and interest by professionals in helping youth develop the skills they need to be successful as adult users of the healthcare system,” said Mukherjee. “We are seeing more adult providers who understand the needs of young people with disabilities who are aging out of pediatric care.”

Awareness has brought progress, but challenges remain.

“Pediatric and adult care are not set up in the same way. For example, a spina bifida clinic and spinal care clinic are similar, but they are not the same. Adults with complex conditions going to a spinal care clinic may not be getting all of their needs met,” said Mukherjee. “The special pediatric clinic that addressed all their needs as a kid doesn’t exist in the adult care system.”

Mukherjee’s own focus on the transition to adulthood remains as strong as ever.

“I’ve been following some of the research initiatives at the University of Illinois Chicago. It’s exciting to see they are collecting data, exploring different aspects of complex care and its costs, and working towards building a framework that brings all the pieces together for adults with complex care needs,” she said.

“DSCC plays a vital role,” Mukherjee noted. “Sharing their information and ensuring it’s always there for the families we serve is important.”

Thank you, Dr. Sue, for your leadership to help families and professionals support the successful transition to adulthood!

Visit our Medical Advisory Board page to learn more about the MAB and its mission.

The annual Stepping Stones of Transition Conference gives families and professionals valuable resources and information to support youth on the path to adulthood.

Sixteen-year-old Ayla Etheridge says she’s faced many surgeries and physical limitations throughout her life.

She was born with a spinal lipoma (a mass of fatty tissue) and has experienced nerve damage and scoliosis. At one point, she needed a tracheostomy to breathe.

Ayla now uses a wheelchair and credits her physical challenges with “making my brain better.”

“I always bounce back and don’t want to just sit around and get depressed,” she said.

Ayla is also a careful planner, extremely tech-savvy and loves gaming, character design and writing.   

As she attended the Illinois Statewide Transition Conference, Ayla thought more about how these interests and skills will shape her future and career goals.

“I’m very independent and would like to do more things myself,” Ayla said. “This conference has kind of helped me visualize and think about my next steps.”

The 17^th annual transition conference, titled “Stepping Stones of Transition,” took place in East Peoria on Nov. 3-4. The conference helps both families and professionals learn about the resources, information and opportunities available for youth with disabilities as they prepare for adulthood.

Ayla and her mom, Rachel, were among nearly 450 people who attended in person.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) helps sponsor the conference and serves on its steering committee.

DSCC also covered the related costs for 34 of our participant family members to attend, including the Etheridges and the Barraza family.

“I am so thankful to DSCC for the fact they covered the cost to be here. That made a big difference in us being able to attend,” Anita Barraza said.

“Education empowers me”

Anita’s son, Daniel, 17, is a DSCC participant. His older sister Diana, 22, left DSCC last summer.

All three attended together along with dad, Jose, and Anita’s mother-in-law, who helped care for Daniel and Diana when they needed a break from conference activities.  

“It was great to have my husband be able to be part of the process and that both he and I could listen and take in the information,” Anita said. “(The conference) is also a nice way to spend time together as a family. It’s almost like a mini-vacation for us.”

Anita is an occupational therapist who works with school children, so she understands both sides of the need for information and resources when supporting young adults with disabilities.

“As a parent, we can feel so overwhelmed. Even if help is right there, that reach can be hard to do,” Anita said.

That’s why opportunities to learn about a variety of resources and network with other families and professionals are so important.

“These types of resources educate me on how to best provide for my children’s needs and for their future,” Anita said

Both Daniel and Diana have significant medical needs and are unable to safely live on their own.

Anita says it’s hard to think about, but she realizes must start planning for who can care for Daniel and Diana when she and her husband can no longer do it. Residential placement may be necessary in the future.

The Barrazas also want to learn about possible day programs that can offer one-on-one support to Diana and possible employment options that would work well with her needs.

“Education empowers me to be better prepared to help (Diana and Daniel) have a good quality of life,” Anita said.

“One step ahead”

Anita had told two other DSCC moms about the conference and encouraged them to attend. One of those moms is her friend Yessy Castillo.

Though Yessy’s son, Jacob Ortiz, is only 4 years old, she knew it was important to go. 

“I want to be aware of what services are available for Jacob,” Yessy said. “Most importantly, I want to be one step ahead. This conference allows me to get the information on what can benefit Jacob.”

Jacob was born with a cleft palate, an underdeveloped jaw and his tongue pushed back toward his throat. He also had malformations in his hands and feet, and his intestines did not rotate appropriately.

Jacob now has a tracheostomy and depends on a ventilator 24-7 to breathe.

“I appreciate getting the opportunity to meet people and attorneys for advice and support and more legal information on Jacob’s rights,” she said. “If I was not exposed to these events, I wouldn’t know what is available.”

While Yessy speaks limited English, she said the presentations all gave information in a way she could understand.

Melania Tinoco, who also speaks Spanish and learned about the conference from Anita, said connecting with other families at the conference helps her feel more confident.

“It helps seeing we’re all in the same boat and finding out we aren’t alone,” Melania said.

Her daughter Jeny is 14 and has been a DSCC participant since birth. Jeny has Pitt-Hopkins Syndrome, a rare genetic and neurological condition that causes developmental delays.

Melania said the conference has helped her plan for what happens to Jeny if she gets sick and/or can’t take care of her daughter. She also appreciated the breakout sessions on helping youth with disabilities respect their body and feel empowered to say “no.”

“The information has been helpful and inspirational,” Melania said.

Putting information into action

The conference consisted of informative breakout sessions in the areas of employment, education, health care and more.

DSCC participant Vera Lynn Lindquist, 17, and her grandmother, Cheryl Lindquist Calcese, said they enjoyed the “Awareness and Transition Services for Students with Disabilities” session. It gave them helpful information on sex education and tips for building good money management skills.

Cheryl is Vera’s legal guardian. She and Vera planned to start a new budget at home after the conference. Vera will get paid for doing chores, such as cleaning her room, helping with the laundry and feeding her two dogs and cat. She will also get a debit card so she can buy things and track her spending.

Vera has autism, attention-deficit hyperactivity disorder, anxiety disorder from childhood, tinnitus and hearing loss, and seizures.

She enjoys being an advocate, helping others and encouraging everyone to be kind.

During the breakout session, “Your Story Has Power: Great Expectations and Pieces of the Self-Advocacy Puzzle,” Vera stood up and actively participated during the presentation.

Vera and Cheryl hope to attend the transition conference again next year.

DSCC participant Sabrina Doueihi, 20, was among several self-advocates who shared their perspectives during the “Transition Success Stories” breakout session. She is currently a junior at Bradley College, where she is studying criminology. She hopes to go to law school and become a prosecutor.

Sabrina spoke about the importance of staying true to yourself and what you want to do. She also recommended that youth with disabilities focus on what they can do and who can help them achieve their goals.

“Trade stories and network”

For brothers Jaysen and Justen McMenamin and their parents, the transition conference was a good opportunity to plan for life after high school.

Jaysen McMenamin, 18, is a senior at Woodland High School near Streator, where he is an honor roll student and honorary captain of the school’s football team.

He says he’s interested in digital media and related job opportunities. But, he’s still deciding on the path that’s right for him after graduation.

Justen, 14, is a freshman at Woodland High and interested in coding. Both brothers have Duchenne Muscular Dystrophy and are enrolled with DSCC.

Their stepfather, Charles Cusick, said the family wanted to learn more about jobs and career fields that are accessible for the boys and provide more opportunities than what’s available in their small community.

They were also seeking information about camps and other recreation programs for Jaysen now that he has aged out of other programs.

The brothers enjoyed talking with some of the vendors about college resources, job coaching and training programs, and future housing opportunities.

Jaysen would like to live on his own but needs to make sure he has the right supports in place.

The brothers’ mom, Deanna Cox, said she appreciated the breakout session on Supplemental Security Income (SSI) benefits. Jaysen and Justen’s dad passed away in June, and the session helped her better understand how to help her boys keep the benefits they’re entitled to. 

The family met up with their DSCC Care Coordinator Kristin Lenover during the conference.

“If families can get away from work, there’s so much they will get out of being at the transition conference,” Kristin said. “Attending in person gives you so much access to all kinds of information. There are also opportunities to meet other families, trade stories and network.”

Thirty DSCC team members attended the conference to network, learn from others and strengthen their skillsets and tools to serve participant families.

DSCC also sponsored the conference’s healthcare 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.

DSCC Transition Specialist Darcy Contri has helped plan the conference since it began 17 years ago. This year’s event was her last before she retires.

“I’m so grateful for and have loved being part of this great work,” Darcy said. “Partnering with talented people from organizations across the state to help others has made a positive difference in so many lives. It is my hope the annual conference will continue to make an impact on improving adult outcomes for youth with disabilities for many more years.”

Visit our Facebook page to see more photos from this year’s conference.  

Families and professionals came together in person and virtually at the annual Stepping Stones of Transition Conference in East Peoria to improve outcomes for transition-age youth with special needs

As a single parent raising a child with complex medical needs, Kristen Fisher says it’s easy to feel isolated.

The feeling subsided as she walked through the East Peoria Riverfront Conference Center and saw dozens of other parents and youth with similar needs.

“Seeing everyone at the conference and meeting other parents, it helps confirm that I’m not alone,” Kristen said.

The Illinois Statewide Transition Conference, titled “Stepping Stones of Transition,” returned for its 16^th year on Nov. 4-5 in East Peoria after a one-year absence due to the COVID-19 pandemic.

More than 660 families and professionals gathered in-person and virtually to gain skills, resources and information to help youth with disabilities prepare for adulthood.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is a conference sponsor and served on its steering committee.

DSCC covered the conference-related expenses for 33 of our participant family members across the state.

A “Phenomenal” Experience

Kristen is the mother of DSCC participant Connor Fisher, who will soon turn 15 years old. He was born prematurely with profound delays and a “smile that will melt your heart,” she said.

This year’s conference was Kristen’s first and she called the experience “phenomenal.”

“It’s hard to grasp that my baby is not a baby. He’s growing up. It’s a scary transition,” she said.

Kristen particularly enjoyed the breakout session “SSI, SSDI, HFS: Understanding the Alphabet Soup of Government Benefits.” She gained a better understanding of available government benefits and how they change over the lifetime.

DSCC mom Amy also learned helpful information during the breakout session on government benefits. She said financial planning is an important part of preparing for her daughter Jaida’s future. Jaida, 17, has been a DSCC participant since just after birth.

Eighteen-year-old DSCC participant RJ Smith attended the conference with his mom, Karla. It was the first time attending for both.

RJ is a senior in high school who plays the baritone in his high school band. He wants to go to culinary school after graduation to become a baker.

He picked all the conference breakout sessions that he and Karla attended.

One of their favorites was about the Fast Track Transition Program through the Illinois Department of Human Services’ Division of Rehabilitation Services. The program provides pre-employment transition services to students with disabilities.

RJ said he is ready for more independence, and Karla said the session helped open her eyes to more options to help achieve that.

“I want to help him become more independent and push him toward that but not just leave him sitting the middle of the road, stranded,” Karla said.  “(The conference) overall has been helpful.”

Preparing for Life After Graduation

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

• Employment
• Education
• Community
• Health Care

DSCC participant Michael Rounds, 15, said he enjoyed the breakout session on the Culture of Coordinated Support Model. This model is where people with disabilities, families, supporters, agencies and service providers work together to develop and implement consistent support plans with unified goals and services provided by the provider best suited to do so.

Michael said the session made him think about getting more involved with his Individualized Education Program (IEP) at school. He also liked learning more about what choices are available to him as he plans for his future.

His mother, Lori, said the conference helped her know where to start in preparing Michael for life after high school graduation.

Rosa Menard, mom to 17-year-old DSCC participant Jacob, said the amount of information to soak up over the two-day conference was almost overwhelming. She took many notes about potential resources and programs to discuss during Jacob’s next IEP meeting.

Jacob is non-verbal and she wants to set him up for success after high school.

Rosa encouraged other families to start the transition planning process as soon as possible.

“Start asking those questions now,” she said.

Improving Outcomes

Nearly 40 DSCC staff members attended the conference in-person or virtually to network, learn from others and strengthen their skillsets and tools to serve our families.

DSCC also 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.

DSCC Transition Specialist Darcy Contri said attending providers found helpful tips and information they will apply in their own practices and interactions with youth and families. These changes include:

• Starting the transition planning process sooner with patients and families
• Making sure the youth and their family are included in all decision-making and planning
• Keeping a holistic view of the patient and noting environmental barriers for their family
• Emphasizing self-determination when working with youth and families on transition goals
• Discussion of self-management strategies with youth and families

Darcy has been involved with planning the conference for the last 16 years.

“Every year it has been exciting to see the positive impact the transition conference has on improving outcomes for Illinois transition-age youth and their families,” she said.

Visit our Facebook page to see more photos from this year’s conference.