Petra Petty hopes to promote greater understanding and disability representation

Petra Petty says she’s fought for greater understanding and representation of the disability community her whole life.  

The 17-year-old Kewanee high school student was born with cerebral palsy and uses a wheelchair. As she’s grown, she’s advocated for greater accessibility in her school district’s buildings. She also successfully pushed for a wheelchair swing at a local park playground.

She’s also passionate about other social justice issues and being an advocate for others.

Now Petra gets to share this passion and her experiences with a wider audience.

Petra recently started a podcast called “Roll With It.” The podcast focuses on living with a disability, current events, pop culture and more.

“I always had a desire to start one,” Petra said. “I’ve always loved talking about my opinions, and I’ve always been on social media, but I felt like I needed a longer form to share my thoughts. So, I just decided to make one. And I really love podcasts.”

Petra is a participant in the Division of Specialized Care for Children (DSCC). DSCC partners with families to help them find the right services and resources for their child’s special healthcare needs.

Petra says DSCC has helped her family with insurance coverage issues and how to navigate the healthcare system as a whole. As Petra has grown, she gets to speak with her DSCC Care Coordinator herself during regular check-ins.

“I really love talking to her and having someone to ask questions to and who I can also relate to,” Petra said of her current Care Coordinator Sarah Kelly. Sarah also has a disability and uses a wheelchair. “It helps a lot.”

Petra started the “Roll With It” podcast in September. She started with weekly episodes and took a short break during her high school exams and the holidays. She thinks of different topics to cover by drawing inspiration from current events, feedback from her social media followers and daily life experiences.

“People don’t understand disability,” she said. “I talk about the struggles and the dynamics of it. I want to show non-disabled people how it really is and not just what they think it is.”

Petra’s received great feedback so far.

“I have classmates that listen to it and teachers,” she said. “People have been supportive.”

Petra is also noticing a difference within herself since starting the podcast.

“I’ve learned how to be more open and honest and be less afraid. It’s given me a lot of confidence,” she said.

“Roll With It” is available on Spotify and Amazon Music.

Petra is excited to see where it leads. She currently plans to go to college and major in psychology and minor in political science or social justice.

Petra was also recently selected to join the Girls Committee of the Illinois Council on Women and Girls. Lt. Gov. Julianna Stratton chairs the council, which advises Gov. JB Pritzker and the General Assembly on policy issues affecting women and girls.

Participants on the council’s Girls Committee share their experiences and perspectives to help make Illinois a place where all girls can thrive.

Petra said she hopes to continue to be a force for positive change through the council.

She also encourages other teens to not let fear or doubt hold them back from trying something new and sharing their voices.

“If it doesn’t work out, it doesn’t work out,” she said. “You never know until you try.”

You can learn more about Petra’s background and podcast in this news article from the Kewanee Star Courier.

Congratulations, Petra!

Mom’s new podcast features Care Coordinator Amanda Kaufman and how she helps children with medical complexity through DSCC

As a Care Coordinator in the Home Care Program, Amanda Kaufman guides parents and caregivers as they learn to care for their medically complex children at home.

One of those parents formerly on her caseload is Erica Stearns. Erica is the mother of two Home Care participants, 5-year-old Margot and 3-year-old Caratacus.

Earlier this year, Erica started a podcast called, “Atypical Truth.” The podcast focuses on issues affecting caregivers, individuals with disabilities and individuals with complex medical conditions.

Erica recently invited Amanda on the podcast to talk about her role at the Division of Specialized Care for Children (DSCC), where she works in our St. Clair Regional Office.

During the conversation, Erica spoke about how Amanda and DSCC have provided invaluable support to her family:

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and really began helping us to navigate our new lives with a medically complex child.

The beginning of this experience was actually very difficult. It occurred during a time when I was still learning how to cope with the acceptance of the unexpected that came with this unknown diagnosis.

DSCC has played a tremendous role in helping our family to thrive, really. Not only have they helped to provide the means for us to care for our children at home rather than in a hospital or an institution, they’ve also supported us emotionally throughout every step of this journey.

They are the people who we can guarantee to check in on us regularly, to tell us about a resource or a charity that might benefit our children, and they even go so far as to send birthday cards to each of the kids, which I just can’t express it enough how touching and heartwarming that singular gesture is.”

Amanda talked about her background as a social worker and her passion for connecting families to the right resources.

“I love finding resources, and I love being successful at finding something that a family needs,” Amanda told Erica.

Amanda also shared how caring for her late mother now helps her relate to her participant families’ challenges and emotions.

You can access the entire podcast episode, titled “Resource Hunter,” on the Atypical Truth website. It is available for listening on all popular podcast streaming services.

A big thank you to Erica for featuring DSCC and highlighting Amanda’s compassion and commitment to our participant families!