I Want to Have My Life Back
Royston, Georgia (Senate District 50)
Nick Papadolpoulos is a 40-year-old man with cerebral palsy, which has led to severe arthritis and obesity. As he lost the ability to walk in his 30s, Nick eventually became a wheelchair user. These days, he’s become further confined to living in a nursing home facility in Royston, GA. “These places simply shouldn’t exist,” Nick says, with not a small amount of frustration.
Being born six weeks premature likely caused his cerebral palsy. Nick used to walk on canes before the arthritis that came on in his late 20s attacked his knees. He started using a wheelchair when he was 32. Nick says housing in particular is a challenge for a person with accessibility needs.
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. The second time he lived 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 we are facing here in Georgia and nationwide. When Nick first landed in the nursing home, it was supposed to be for a state required 90-day wait to qualify for housing assistance. That was over two years ago. A long two years. “My bags are packed,” says Nick. “I am so out of here. Like yesterday.” (Story continues below after slideshow.)
Currently, Nick does not have a Medicaid waiver. That’s why so many people are advocating for 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 would be to find housing. Joe Sarra with the Georgia Advocacy Office has been keeping the channels open for him so that, as soon as housing is secured, Nick’s waiver will be waiting for him.
Nick has a goal to walk again, but he feels it will require him getting out of the facility where he’s currently living. “It’s kind of what holds me back with a lot of my goals and dreams,” Nick says. He talks about the way Medicaid is structured, giving over all his financial decisions to the nursing home. It doesn’t go through him like it used to, “they basically decide my fate.”
When Nick speaks about how Georgia is more accepting of ambulatory disability, he means both the people and government institutions. “It’s kind of like a revolving door. Because the state has these policies, people’s knowledge base is limited,” Nick reflects. Nick says there’s “ADA Accessible” and then there’s “Georgia Accessible.” This is not what the ADA intended.
When he gets back to his own housing and his Medicaid waiver comes through, Nick would like to go back to work as an advocate. He has a dream to get back into the gym, make his own food choices and get healthy. Currently Medicaid is paying the nursing facility upward of $6,000 per month for his care and food. He says it’s not a healthy diet. “I don’t feel like an adult. When was the last time you had chicken nuggets on a regular basis, you know? I don’t want to sound ungrateful because I don’t want to be on the street either, but I want to have my life back.”
If given the chance to sit down with a legislator, Nick would say, “Quite honestly, I think these facilities should not exist.” He speaks eloquently about how “everyone is grouped together like animals.” The staff have issues from being underpaid and understaffed, 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 to 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.”
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon