After much hard work from the Friends of L’Arche project team, along with film producers, editors and directors, GCDD is excited to soon release its film, “6,000 Waiting.”
Seasoned filmmakers Michael McDonald, Lexi Read and Zach Read came together and created a stunning look into the lives of Georgians with disabilities and their families. The film follows Ben Oxley, Nick Papadopoulos and Noah Williams and his mother Naomi as they navigate Georgia’s daunting Medicaid waiver system. Storytelling team lead Irene Turner shares, “The film is not just a story about what has been … it’s the story of what has shaped the present and contains the pieces for renewed movement forward. Georgians with disabilities have the right to live full lives in their communities, and ‘6,000 Waiting’ speaks to the urgency of making this a reality for all.”
This documentary is the latest interpretation of the storytelling initiative, which began in 2018 to capture the stories of Georgians with intellectual and developmental disabilities (I/DD). Upon its release, the film will join the catalog of written stories and photographs and the first season of the Hidden Voices podcasts.
GCDD looks forward to bringing this film virtually later this year and via in-person screenings when pandemic-related distancing recommendations are lifted. In the meantime, meet the people behind the stories.
Ben was born at 27 weeks and weighed only 2 lbs, 8.5 oz. He was placed in a neonatal intensive care unit for almost two months. Whether his cerebral palsy was caused by either too much oxygen – or too little – remains unknown to the family. After the reality sank in, Ben’s father John, decided: “I want him to have as full of a life as we have.”
The Oxley family gets going remembering some of Ben’s adventures, one interrupting the other: “Remember the time we took Ben on a banana boat that bounced so hard? Or the time when he jumped out of a plane and parachuted to earth?”
After he graduated from high school in 2006 and watched his friends go off to college, Ben hit a slump. He went from being his extroverted and active self to being at home with not much to do. There were few resources that were a good match for him in his community, which is outside metro Atlanta.
After working at Publix for 10 years as a greeter, his mother Susie wanted to find other opportunities for Ben. They found that traditional “day programs” were too limited to meet Ben’s abilities or interests and wouldn’t stimulate his mind enough.
Then Susie found out about a training program called Partners in Policymaking. For nine months, Ben learned how to be an advocate, how to speak in public and interact with lawmakers. That led to Ben becoming an advocate with GCDD’s Unlock! Campaign, which aims to get more funding for people with disabilities. The connections he made at Unlock! led to Ben learning about the Medicaid-funded New Opportunities Waiver (NOW). Ben was one of the lucky ones who got his waiver after a nine-month wait.
The waiver allowed Ben to get out of the house and access more appropriate programs and resources. He took a weekend training with the Center for Leadership in Disability (CLD) at Georgia State University in 2016. The Center invited Ben back to become a trainer, and he volunteered to work with an HIV prevention group focused on reaching people in the I/DD community. He continues to work in both capacities with CLD.
And what are Ben’s plans for the future? He wants to write a book, expand his YouTube channel, start a clothing line for people who use wheelchairs, do public speaking and train others to advocate for themselves and others. Ben has no shortage of dreams.
Thanks to the support of his family and the NOW waiver, he has every reason to believe he can achieve those dreams.
Writer: Moira Bucciarelli, Photographer: Haylee Fucini-Lenkey
Nick Papadolpoulos is a 40-year-old man with cerebral palsy and arthritis. Born six weeks premature, Nick used walking canes before the onset of arthritis in his knees in his late 20s. Shortly after that time, he began using a wheelchair for mobility. Currently, Nick lives in a nursing home facility in Royston, GA. “These places simply shouldn’t exist,” Nick says, with not a small amount of frustration.
It’s deeply ironic that Nick has found himself in this precarious, isolating place with his own housing because his previous work had to do with advocacy around this issue. While living in Athens around 2009, he worked for the Center for Independent Living, helping other people with disabilities explore their housing choices. It made him aware of the problems that Georgians are facing here and nationwide around housing options. When Nick first entered the nursing home, it was supposed to be for a state-required 90-day wait to qualify for housing assistance. That was more than two years ago.
Currently, Nick does not have a Medicaid waiver. That’s why so many people are advocating with him. He’d like to be on the ICWP or COMP program and is on the waitlist for both. As long as he’s in the nursing home, all waivers are off limits to him. The first step to him leaving is securing housing. When he gets into his own housing and his Medicaid waiver comes through, Nick would like to return to work as an advocate.
Nick would say to legislators, “Quite honestly, I think these facilities should not exist.” The staff have issues from being underpaid and overworked, which leads to their own aggressions and unhappiness. Nick feels lucky that he can speak up for those who cannot. Still, he shares a few horror stories of having to sit in his own waste for more than an hour and a half because no one had time or the ability to change him. There are also frequent messes on the floor. “It’s a systemic problem. It’s like nitro and glycerin. By themselves, they’re harmless. Put them together, they’re harmful and destructive. It’s a powder keg.”
“This is the end of the line,” Nick says fervently. “Why would anyone want to have this place be here? That’s why it’s important these waiver programs don’t go anywhere. Because if they do, there’ll be a lot more instances like me.” He goes on to talk about people like himself who might be stripped from their homes, their choices and their lives. “People with disabilities are musicians, artists, bankers and scientists with dreams and ideas. They just require extra help. Without that extra help, those dreams won’t happen.”
Naomi and Noah Williams
When Noah Williams was delivered, he immediately had to be revived. “They never expected him to live. He’s a fighter,” Noah’s mom, Naomi, says. Noah was born a “micropreemie” and now has cerebral palsy, a seizure disorder and cortical visual field impairment. Together, he and his mother are a team.
Noah is now eight years old and 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 extensive. “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 and no insurance. “Nothing changed with him, nothing. That’s what’s so frustrating for me,” says Naomi. “There’s no safety net for them.”
During that time Noah lost his slot with a speech therapist that he had 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 got on the Katie Beckett 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 wants elected officials to know that disability doesn’t mean less. “Don’t pity us, but don’t forget us.” 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 18. “We are not going to hide in a corner or in the house,” she insists.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon