Brandon Johnson, 26, knows it’s not every day that a person with medical complexities gets to move into their own apartment but, thanks to his care team at Akron Children’s Hospital, Brandon is defying the odds and giving hope to those who have the same goal.
“Brandon’s independent living still requires around-the-clock care so we really weren’t sure how it would be possible. Denise (Fabian) was instrumental in helping us find staff nurses and caregivers, navigate negotiations with new adult providers and overcome the naysayers at the state,” said Ronna Johnson, Brandon’s mom. “She believed; she pushed; she made this happen. She is a remarkable advocate and we’re so grateful.”
Brandon, who suffers from spinal muscular atrophy, a genetic condition that weakens his muscles, is reliant on a wheelchair, ventilator and caregivers for daily tasks. To get him into independent living, Brandon’s list of needs was long and the odds of getting funding, appeals, staffing and logistics to go his way was even longer. Thankfully, for social worker Denise Fabian, overcoming obstacles to help patients live their best life is just part of her job.
“My priority is always my patient and I don’t forget that. I knew living independently was Brandon’s goal and I wanted to do everything I could to get him there,” said Denise Fabian, social worker at Akron Children’s. “Other entities are quick to look at what’s been done before or they just review funding and stop. My job is to keep turning the conversation back to what’s in the best interest of my patient. What are his rights, not just what’s right for him.”
In the midst of working to get Brandon long-term housing, an injury forced him into a near year-long stay at Akron Children’s.
“I wasn’t allowed to visit or stay with him because of COVID-19 restrictions so he had to step up and speak confidently with nurses and staff about what he needed and why,” said Ronna. “Brandon had never been in the hospital by himself so this really forced him to advocate for himself in a way he had never done before…it actually helped him in the end as he transitioned to adult care.”
Due to COVID-19 protocols, Brandon wasn’t able to leave his room most days and had limited in-person contact with family and friends. As he worked to manage his medical needs without his mom, he also began to struggle with the mental and emotional stress of the situation.
“It was overwhelming at the beginning. I was in a lot of pain and Expressive Therapy really helped me express myself when I didn’t know how to express myself,” said Brandon. “I was angry and sad and they helped me get those feelings out through art, writing and poetry.”
In all, Brandon wrote 72 poems. He read, edited and talked about them with staff and, with Nicole Robinson’s encouragement, Brandon published his poems.
“Emily, Liv and Nicole made a traumatic stay of being in the hospital alone more tolerable. I looked forward to their visits and doing something productive,” said Brandon. “They influenced my interest in writing and even my major in college.”
Thanks to the relentless efforts of Denise and the entire Palliative Care team, Brandon was approved for independent living and moved out of the hospital.
As Brandon settles into his own place this spring, he feels happy and ready to manage his new providers and in-home nursing staff. He’s also ready to set new goals.
“I’m an English major at Kent State with a focus on screen writing. After graduating, I want to keep writing, travel and explore the world,” said Brandon.