Before the pandemic, Jessica Walker would cultivate lettuce in a greenhouse. She would stretch in yoga classes, sing karaoke, cook, participate in art classes and hang out with her peers throughout the week at Stone Belt Arc, a nonprofit organization that supports and provides resources for people with disabilities.
She would ride on the bus for an hour to arrive, but it was worth it.
She had control over her life despite her continuous seizures and a cortisol deficiency, her mother, Mecca Walker, said. But Jessica has barely left home since the pandemic started, and the lack of day-to-day interaction is tiring her.
Stone Belt Arc closed its programs to their clients due to COVID-19 on March 16. It opened back up to limited numbers of people June 1, but for clients such as Jessica, who have pre-existing health conditions, returning now would be too risky.
The repertoire of activities that the clients at Stone Belt were used to is now limited to online or small-group, socially distanced activities. That’s what makes the pandemic particularly upsetting to the clients, said Stone Belt Arc CEO Leslie Green.
“We’ve had to be a little more restrictive to our clients, which is just totally against our mission,” Green said. “Because our mission is about getting people out into the community.”
The clients who have returned, or who live in Stone Belt’s residential programs, have been supported by Stone Belt’s direct support professionals. One of them, Brandon Duncan, has worked for Stone Belt for five years and volunteered from 2009 to 2015 prior to working full-time. He returned to work June 1 when Stone Belt reopened.
He said he felt like direct support professionals have been left out of public discourse and news coverage about essential workers.
“I think DSPs that work at day programs and group homes are one of the MVPs that are helping make this world a better place in this time of uncertainty,” Duncan said.
Stone Belt Arc has about 500 employees, and 80% of them are direct support professionals or provide direct support to clients. Before the pandemic, the DSPs helped clients commute to work, complete basic tasks and figure out what to do each day.
Duncan said he is the first Stone Belt DSP to have high-functioning autism. He also cares for his younger brother, who has severe autism. He said these experiences, as well as volunteering before working there, have helped him become familiar with the clients’ personalities and needs.
“Since technically I have some sort of special needs as well, I can plan ahead and help the people out,” Duncan said.
If they become frustrated, Duncan knows to defuse the situation and get them engaged in activities. He said making activities a teachable experience is fulfilling to him.
Stone Belt Arc receives two-thirds of its funding from the federal government and another third from the state. But because its funding is based on how many services it provides, Stone Belt Arc has not received as much money during the pandemic as it usually does.
During a normal year, Stone Belt Arc serves 1,300 people, but during the pandemic, that number has gone down to about 600 between its residential clients, day services and clinical services. Most of its clients are between 20 and 60 years old, but it also serves children and seniors over 80.
Their group homes are licensed similarly to nursing homes, meaning Stone Belt has had to restrict visitation to the homes. Other Stone Belt clients have a hard time tolerating social distancing or wearing a mask, Green said, which puts them at greater risk beyond having health issues such as diabetes, seizures and breathing problems.
Looking forward, Green is worried for the future. She said she hopes the state of Indiana will preserve services for people with disabilities and not cut them if the pandemic is prolonged and they have to continue to limit the number of services they provide.
“We’re starting to see that in other states where some of the services are being cut,” Green said. “But that would really be cutting a lifeline for the individuals that we support.”
Of all the activities, Duncan says the clients miss the daily dance parties. They can’t live broadcast dance parties on Facebook as they would with art classes because of copyright issues with music, but now every classroom and group home has its own dance party at least weekly, Duncan said.
Duncan said he wishes more people recognized the work of the direct support professionals in making sure people with disabilities stay safe and engaged during a pandemic that has limited or cut off interaction with people.
“The world may have stopped, but the essential workers have not,” he said.