Unsung Heroes Continue to Staff East End Disability In the Face of COVID-19

Ever since Hurricane Katrina, Joy O’Shaughnessy has wrestled with a reoccurring nightmare — that a catastrophic event would prevent her staff at East End Disability Associates from serving their 100 residents, none living without an intellectual or developmental disability, or both.

It hasn’t happened yet, the chief program officer reported with a restrained sigh of relief, hyperaware of the COVID-19 crisis the Riverhead-based organization is now navigating.

Having emerged on the South and North Forks as a significant and deadly presence, the novel coronavirus has forced the region’s disability agencies to shutter day programming, cancel all special events and, worse, impose a mandatory lockdown for residences — a difficult concept for many of the residents to grasp.

But as they acclimate to their new normal, the concern is not limited to the health threat that they face. It is also a threat assumed by the direct support professionals who care for them — essential employees who show up, day in and day out, despite the risks.

And despite earning just above minimum wage to do it.

“I just go to bed every night hoping that when we get up in the morning, the staff are going to keep coming to work, because these are folks that we have been advocating for, for so long, to be able to compensate them with a livable wage,” Ms. O’Shaughnessy said of the government-mandated pay. “These people are not paid a lot of money, and their dedication and their commitment to the folks that we support is amazing. But people have to worry about their own families and their own health, too.”

To avoid layoffs, EEDA has redeployed some of its 700 employees to different roles that better meet the organization’s hierarchy of need. The seven group homes on the East End, which house 52 residents, currently stand as top priority, followed by the four dozen residents who live independently in apartments with supplemental support.

“It’s very scary and lonely for the folks that we have who are on their own,” Ms. O’Shaughnessy said, “and you have to remember, when you’re working with people with intellectual disabilities, their level of understanding of things like social distancing and hand washing and all the hygiene issues that come along with being sick, it’s really hard for them to understand why their routines are being changed.”

To maintain some sense of normalcy, day programming — such as cooking classes, job training and creative arts — have shifted into the residential houses, which are closed to visitors other than EEDA staff. To enter, they all must have their temperature taken, according to John Hatton, director of program operations.

“I was at three places today, I had my temperature taken three times — and I’m good,” he said. “Our guys are very much about routine and, right now, we’re establishing new routine. They’re seeing familiar faces because our day program staff are working in our residences, which isn’t normal.”

The small dose of familiarity does not outweigh the anxiety that has come from disrupted schedules and physical distance from family members who would often visit, Ms. O’Shaughnessy said. In an attempt to alleviate some of that stress, the staff has set up video calls with family via Zoom, and tries to take small groups on frequent walks to nearby beaches, all the while providing reassurance and emotional support.

“For those who don’t have any family or anyone else connecting with them, we’re it,” Ms. O’Shaughnessy said. “So we are really doing everything that we can to help them through this crisis. It’s a little overwhelming, so we’re just trying to make sure that we’re checking in with people regularly. We’re doing whatever we can to support people while keeping everyone safe.”

Securing personal protective equipment, such as gloves, masks and gowns, has proven to be one of the organization’s biggest challenges, according to Lisa Meyer Fertal, chief executive officer of EEDA.

“We are in the class of essential workers, but that doesn’t allow us to get the protective equipment that we need. It still goes first to hospitals and nursing homes, and doesn’t come to us. So that’s been a great struggle,” she explained. “All of us are facing similar issues, all the organizations. And I want to tell you something: we are all working very closely together, and that has been extremely refreshing, that everyone’s come together.”

Manorville-based Independent Group Home Living recently gifted EEDA with over 150 gowns and some masks to help the organization prepare for the worst. While no residents are currently sick from Covid-19, a number of staff members have tested positive and are currently out of work until they recover.

“Our greatest concern is that so many of our staff will get sick at the same time, that we will not be able to provide the quality care that is required for our folks. If you talk to any provider, we’re all going to say the same thing as far as that goes,” Ms. Meyer Fertal said. “Our direct support professionals are the essential workforce that keeps this place running and keeps everybody having successful lives — and that is our absolute greatest concern. They are definitely the unsung heroes of our organization.”

“This is a wonderful community we have at East End Disability Associates, and we’re gonna get through this,” Ms. O’Shaughnessy added. “It’s just a lot of uncertainty and changing from minute to minute.”