Team Noah and Lessons in Exceptional Living
Evans, Georgia (Senate District 24)
When Noah Williams was delivered, he immediately had to be revived. “They never expected him to live. He’s a fighter,” mom, Naomi, says. Due to the complications of his birth and his oxygen deprivation, Noah was born a “micro-premie,” and now has cerebral palsy, a seizure disorder, and cortical visual field impairment. Together, he and his mother are a team. Noah is eight years old. Naomi has turned their NICU journal into a book called, And God Remembered Noah. “It’s part of my healing,” reflects Naomi, “but also so people see where Noah started from.”
Noah is currently on the Self-Direct COMP Medicaid waiver, but he’s only been back on it very briefly. When Naomi’s father died, she inherited a small amount of money and her childhood home, which changed their financial circumstances and Noah was no longer eligible for SSI. However, Noah’s medical needs are extreme. “I didn’t care about the check. It’s the insurance, the medicine, doctors’ appointments …” Naomi explains. They applied for the Katie Beckett waiver, and even though people are often turned down on the first application, they were approved. However, from beginning January until end of March, he had no SSI, no Medicaid, no insurance. “Nothing changed with him, nothing. That’s what’s so frustrating for me,” says Naomi. “There’s no safety net for them.” (Story continues below after slideshow.)
It’s important to note that the downtime in Noah’s services was not insubstantial. They were lucky nothing catastrophic happened during those three months. However, other bad things happened as a result. Noah lost his slot with a speech therapist that he’s been seeing for eight years. He’s been bumped down to the waitlist to see that practitioner again. Because there’s more demand than there are providers, if you lose a spot, you’re out of luck until someone leaves the system. The same thing would have happened for physical therapy and occupational therapy, but the providers were willing to work with Naomi to hold payment. Noah goes to physical and occupational therapy weekly at the rate of $160 per visit, so those providers were willing to put over $1,200 on hold until the Williams’ funding came through again. If he’d been denied, Naomi would have been on the hook. Thank goodness the Katie Beckett waiver will back pay up to 90 days, and they were approved on the first try. Imagine what would have happened if it hadn’t come through.
Noah got on the Developmental Disability (DD) waiver when he was four, and then moved to the COMP waiver when he was five years old. Naomi says they were discouraged from getting on the list because it was so long. A lot of families are discouraged, but people can’t ever get it if they’re not on it. “I’m a single parent,” Naomi says. “I thought, if something happens to me, what’s going to happen to him? And then, it seemed like I was going to have to quit my job. Then the state would have to take care of both of us. That makes no sense.”
Naomi and Noah have recently gotten into running through the “I Run 4” program. Their current buddy is in North Carolina, and even though they’ve never met, they’ve become very close. Naomi recently lost her dad, and her buddy lost her mom, so they’ve been supporting each other through running and in family passages. “It’s been life-changing,” says Naomi. “Just the families you meet and connect with.”
If an elected official were brought into the conversation, Naomi says she would want them to know that disability doesn’t mean less. “Don’t pity us, but don’t forget us.” Naomi says. Noah does have a quality of life, and that’s important for people to understand. Naomi reflects on the amount of money that was spent to keep Noah alive in the first five months of his life, “but after that, it was like sink or swim,” In her assessment, Georgia is not a disability-friendly state in terms of support or funding. Disability doesn’t go away when a person turns eighteen. “We are not going to hide in a corner or in the house,” she insists.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon