When someone is passionate about something you can hear it in their voice. Jessica Johnson’s passion for advocating for children with Autism and the D/deaf community shows not only in her tone but also in her efforts.
Jessica and her husband, Ashten, live in Memphis with their young son, William, and Jessica’s younger brother. Both children have autism and Jessica works hard to assist them and ensure they succeed. Jessica says when William was younger, he was nonverbal. Initially, before his autism diagnosis, the family thought there was a possibility of hearing loss like his father. Nonetheless, William is now bilingual in English and American Sign Language (ASL). Jessica says, “Many kids with autism struggle to understand emotions, but William’s experience with ASL has benefitted him tremendously. He notices sarcasm and is super expressive with emotions. He is also attentive to facial expressions. William is often the voice of advocate among his friends; he tells them when something is wrong.” Like mother, like son.
Being a mother means supporting your children as they grow into the best version of themselves and that’s what Jessica does for her family and for other families. Jessica notes, “William was a surprise and a blessing. Prior to having him, I had stage 4 cancer and dropped out of school when I was studying Criminology. I went back to school because of William. I am his first teacher, advocate, and role model. These children grow up to be adults and they need to know that is possible. I want to make sure he has all he needs.” Her advocacy has no bounds. She is willing to fight for what’s right regardless of how long it may take.
Over the course of one year, Jessica appealed six times to get TennCare to re-approve William’s Applied and Behavioral Analysis (ABA) therapist. Each time the appeal was closed without a thorough review or option for a fair hearing. Jessica felt, “They did not even look into anything I submitted and as a parent it really discouraged me that my son’s care was not being taken seriously. In a way, they were discriminating against his disability because they were not acknowledging that this is not an opinion but has been proved in his behavioral therapy data. There is evidence-based practice that shows how he does with transitions. To pull him out of the therapies where he is making strides was absolutely not taking his diverse disabilities into account.” After a year of appealing and a gap in William’s therapies, Jessica decided to try another route. She elicited the assistance of the Tennessee Justice Center. Jessica decided to get his managed care organization (MCO) changed. TennCare denied this request twice despite the MCO admitting that they did not have any providers available at the time and would not have any for at least three months. The Tennessee Justice Center stepped in and wrote to TennCare to explain the issue. Subsequently, TennCare agreed to change William’s MCO and he has since been able to continue all his therapies with the previously denied therapists.
Jessica believes, “Parents are just as important as service providers. It is super important to mentor other families. I do parent mentoring and IEP mentoring. Often, they won’t take parents seriously at their meetings, but they take them seriously at other parents’ meetings because they see them as an advocate rather than a parent. I want to make sure my child grows up in a world that’s open. Bonding together, creating a village and reaching out to parents that are struggling are key.”
Jessica is currently a graduate student at the University of Memphis and founder of the D/deaf and Hearing Club. After graduating, she hopes to open an ABA clinic for Deaf, hard of hearing, and hearing children with deaf parents to implement culturally appropriate interventions which utilize ASL instruction. There is currently no such program in Tennessee. Jessica hopes to fill this gap. Jessica says, “I believe it is important to advocate for our kids’ rights for accessibility in public forums, but also teach our kids how to grow up advocating for themselves and how to educate others on differences. We’ve got to educate positive meaning when met with negative stigmas about diversity or disability.”
TJC is honored to announce Jessica, a strong advocate for her family and her beliefs, as one of our 2022 Mothers of the Year! Jessica does not just think about what needs to be done. Jessica does what needs to be done.
Photographs by Brianna Kesler