People Who Believed in Me
Decatur, Georgia (Senate District 42)
When Vance Kanell was nine months old, his parents, Mike and Gillian, noticed that when he crawled he dragged the left side of his body. “The whole left side of my body didn’t work,” says Vance. A trip to a neurologist led to an MRI and the sobering news that Vance has cerebral palsy and part of his brain did not fully develop. The neurologist told the Kanells that Vance would never walk, write, speak, or read. There was a chance that if they put him in as many aggressive therapies as they could that he might walk, but that he would probably never gain the use of his left arm.
Now, 21 years later, Vance not only walks, but plays baseball and can use his left arm. He can read and write, thanks largely in part to his family’s tenacity in completing the lower school program and obtaining his high school diploma at the Lionheart School in Alpharetta, a school for children with communication and relational differences. “That is where Vance came out of his shell and began to talk,” says Gillian. He even starred in an internationally recognized film short called Bumblebees where he states, “I have done the impossible.” And he truly has. (Story continues below after slideshow.)
When Vance was two, his parents noticed other differences about him. “He wasn’t babbling like a typical two-year-old,” says Gillian. A specialist told them Vance most likely is on the autism spectrum. Gillian recalls, “She said: quit your job so you can work on speech therapy with him all day long. But that wasn’t a viable option for us.”
Gillian and Mike followed the neurologist’s advice and gave their son every possible beneficial therapy they could. “When he was two I remember writing down that we had 13 therapies that he was going to every week – physical therapy, occupational therapy, speech therapy, social skills,” Gillian says. It took a village to help Vance get where he is today. “There were a lot of people who believed in me,” says Vance.
Initially their health insurance paid for the therapy, until their insurance company decided to sue them, claiming their benefits had a cap that the family had exceeded. This was another added stress. “Between the diagnoses and people saying ‘he’s never going to walk’ or ‘quit your job!’ … all of that’s awful and debilitating and demoralizing; the financial piece and scrambling to make it all work is way worse,” says Gillian. Their next funding source was the Katie Beckett waiver, which comes from private funds.
But even that was unreliable, as Vance’s parents were told twice that Vance was not eligible – once because he was getting so much therapy that Katie Beckett deemed he needed to be in a nursing home. Gillian had to go to the office in person and advocate for their son to keep his funding and remain at home.
Lionheart has been a place where Gillian and Mike have found support for their son and assistance in applications for funding. “The applications are just so cumbersome. There are so many forms. There is never anyone who will talk to you on the phone.” Her plea to legislators: “Make the process easier and more responsive to people!”
Vance is eager to talk about work. Once he turned 18 Vance joined Lionheart Works, the vocational training program at his school. Georgia Vocational Rehab Agency (GVRA) works with Lionheart to help implement the program. Vance works two jobs: one at Steel City Pops in Decatur and another at the Alpharetta Parks and Recreation department where he teaches young children in a program called SportsTykes. “It’s fun teaching little kids how to use the balance beam and different sports because I realized that little kids develop the need to understand what life is – you’re not always going to be balanced. You’re not always going to be staying still. You need to learn to move in different ways.”
The next big application to write is for the Medicaid NOW waiver, which Gillian is thankful that the Lionheart staff will walk her through. With a NOW waiver Vance could receive more job coaching. Vance is on the cusp, because he can work some hours without a coach, but he still needs help with life skills. Vance is passionate about two things: people and sports. His dream job is to work for the Boston Red Sox, his favorite team. Maybe with the NOW waiver, that dream can eventually come true.
Writer: Moira Bucciarelli, Photographer: Haylee Fucini-Lenkey