Caring for the disabled in a different place
Pandemic forced closure of programs, leading to increased need for direct service professionals
Jenny Niewinski used to spend five days a week at Opportunity Enterprises’ Lakeside property along Lake Eliza in Porter County, receiving daily living skills and other programs.
Barbara Niewinski said her daughter, 44, has been receiving services from Opportunity Enterprises for 15 years. Now it’s up to Niewinski and Jenny’s father, John Niewinski, to care for Jenny full time in their St. John Township home.
“It’s been a little rough. We’re not used to it 24 hours a day,”
Barbara Niewinski said.
Jenny, her mother said, uses a walker, and is somewhat limited in her movement around the family’s home.
“That’s why she’s missing it, because otherwise she has free rein. She’s missing it and we’re missing it,” Niewinski said.
The COVID-19 pandemic changed all that, forcing the closure of day and other programs offered by the agency, which serves people with disabilities in Lake and Porter counties, and, for many clients, driving up the need for direct service professionals, or DSPs, to provide care.
Going into the crisis, said Neil Samahon, the agency’s CEO, the agency had 167 active DSPs and now has 70 who are working at residential sites. Many of them are now providing 24-hour care as the day services that residential clients once attended have come to a halt.
The agency has 104 clients in residential settings, including seven group homes and 23 supported living sites. OE had 375 employees before the pandemic, Samahon said, and 225 of them are now on furlough.
“Essentially all we’re doing right now is providing care and services to our residential clients,” he said.
OE, he said, is concerned about the strain the pandemic is putting on the health care system, and the crisis magnifies what agencies like OE do and how DSPs serve the community.
“They’re caregivers and our DSPs do many tasks, as h e a l t h c a re wo r ke r s would,” he said. “Even before this crisis, there has been a staffing crisis in being able to hire enough DSPs to serve.”
In an open letter to local, state and federal lawmakers late last month, Samahon noted that agencies that provide DSPs were already struggling with a nationwide shortage of caretakers and the new coronavirus has exasperated the issue.
“The funding for these disability service providers continues to decline, as the needs of the people they serve continue to rise,” he wrote.
Pay is always an issue for DSPs, Samahon said by phone. OE increased pay just ahead of the COVID-19 crisis, and day service DSPs make $11 an hour. Residential DSPs earn $12 to $15 an hour, with higher rates for those who work midnight shifts.
“There’s a lot that’s asked of these DSPs at that $12 to $15 range,” he said.
People who enter the field understand they might not make as much as someone in a different setting but are drawn to the job by the mission, Samahon said, adding they still have to make ends meet.
“These rates need to change,” he said.
Samahon said his agency is on “quasi-shutdown” and sought out DSPs willing to shelter in place with residential clients for three to 14 days, to mitigate the risk of spreading the virus, in part by reducing the number of people going in and out of the residential settings.
“The hope is that coming out of this, we get all our staff back to work and all our clients here,” he said.
The last day for programming at OE, Niewinski said, was on March 13, but she didn’t drop Jenny off at Lakeside that day because she was already concerned about the spread of the new coronavirus.
“We made the right decision,” she said.
Jenny is adjusting to the change, sometimes going for car rides when her parents run errands, staying in the car with her dad while her mom runs into a store, using her walker in the driveway or riding in her wheelchair for a walk in the neighborhood.
Jenny, her mom said, has come a long way through the programming at OE, which includes art, computer time with adaptive equipment, games, music and other activities. Jenny loves going there, here mom said, and, like a lot of people with disabilities, craves the routine those days provided.
“She’s doing better than we thought,” Niewinski said.
For John Kremke, the partial shutdown has meant less time with a loved one, not more. Kremke, of Porter, took guardianship of Bill Osmon, 52, after Osmon’s parents died.
The two grew up together in South Haven and have known one another since they were toddlers, Kremke said, adding Osmon’s mother died in May and his father died in September 2018.
Osmon has lived in an apartment at Lakeside for around six years, Kremke said, as well as participating in the day services offered there.
“Bill would come home on the weekends. With his parents both gone and given the nature of Bill’s disability, it would be nearly impossible for him to live anywhere else, outside of OE or with his parents,” Kremke said.
Because Osmon’s day programs at Lakeside have been shut down, Kremke said, OE has staff “practically living in the apartment” Osmon shares with two other men. Staff changes, he added, are less frequent now.
Amy Lavalley is a freelance reporter for the Post-Tribune.