'Sense of urgency': Caring for adults living with autism during coronavirus leaves some feeling forgotten
“What strikes me most about this crisis is the ordinary amid the extraordinary."
April is recognized as World Autism Month and is usually filled with special events to mark the occasion, including what is perhaps the world’s largest celebration that has been held at the United Nations every year since 2008.
The coronavirus pandemic has not only put a stop to all of that but, critically, it has left those who are vulnerable with special needs -- as well as their care providers -- exposed at a time when stability is key to their survival.
“It’s very confusing and unsettling for our residents to have their daily routines so dramatically affected,” Alex DiMaio, executive director at Special Citizens Futures Unlimited (SCFU), told ABC News.
DiMaio oversees 19 residential locations in New York that are home to 68 adult men and women living with autism. For this agency alone, there are approximately 120 direct care workers among the essential personnel who are still reporting to work each day throughout this crisis in order to care for one of the state's most vulnerable populations.
In fact, in New York, which has been the epicenter of the COVID-19 pandemic in the United States, there are over 500 agencies providing around-the-clock services to more than 140,000 people with similar needs.
“We have about 120 frontline employees right now. Although none of the men and women we support have tested positive, some of our employees have," DiMaio said. "And each day I come to work, I learn that COVID-19 has affected my co-workers and their families in different ways each day. Some of our frontline workers have had family pass away and they still report to work.”
David Ryan, director of residential services at SCFU, is one of those people working with DiMaio on the front lines to care for those with special needs.
“What strikes me most about this crisis is the ordinary amid the extraordinary,” Ryan told ABC News. “Everyone is continuing to show up, day after day to do their jobs and provide the essential support the men and women need now more than ever. Many have lost loved ones of their own, but with no opportunity to mourn as we normally would, they come to work.”
Agencies like SCFU are waking up each day to a host of challenges from limited supplies of personal protective equipment (PPE), filling staffing gaps, in addition to the daily challenges that are a given even on a normal day in this line of work.
Despite the mounting challenges they face, DiMaio says he has been inspired by the dedication of his staff who are “putting their lives on the line every day, and yet still giving everything they’ve got to make sure the men and women we support are receiving the best possible care in the most unimaginable of times.”
But how has the coronavirus pandemic affected those under care by agencies like Special Citizens?
“Routine is often paramount to the autistic, so this break is a big hurdle for many of our folks,” said Ryan. "Staff have been honest and patient with those who are struggling, encouraging them to stay calm and admitting that none of us knows when we’ll be able to return to ‘normal.’”
Paul Greenberger, 57, a Special Citizens resident who relies on their services each and every day, has also found his life completely upended by the COVID-19 crisis.
“I just want things to get back to normal,” said Greenberger. “I look forward to shaking hands again. I want to use public transportation again. I don’t want wearing masks to be permanent. I miss going to my program every morning and seeing my friends.”
DiMaio points out that it’s not just protecting the vulnerable from COVID-19 that is important. It is also vital to consider their mental and physical well-being at a time when it is hard to process what is going on.
"The pandemic is not only keeping them indoors all day. It is restricting their ability to access their known environments freely," DiMaio said. "For those who have worked so hard throughout their lives to become independent, to now miss out on something most would consider trivial, like a trip to the bank, is absolutely devastating to our residents. A lot of us probably take that for granted, but for the people we support, something like a trip to the bank is everything to them.”
But for people on the frontlines like DiMaio, Ryan and their team of almost 120 staff, they worry that if they don’t do their job, who will?
“In my worst moments during this crisis, I’ve been overcome with a sense of urgency and the realization that the men and women we support truly need us,” Ryan told ABC News. “They cannot provide for themselves. Some have family, advocates, guardians. Some have no one.”
“While I don’t feel ‘extremely important,’ I know that what we’re doing is absolutely necessary," Ryan said, "That’s what keeps me going.”