But then Ellen, a geriatric social worker, started following the news of the burgeoning pandemic with particular attention. A couple of weeks ago, she urged Robert’s caregivers to be sure to wash their hands thoroughly and told them of the importance of social distancing — a phrase that had not yet become ubiquitous in our cultural consciousness. Robert stopped going to church and his recreational programs; he stopped doing his volunteer work at a horse farm and two charities where he helps sort donated clothing.
Now, as the crisis worsens and the number of U.S. deaths tops 21,400, Ellen and her son face the same bleak reality that families across the nation have been forced to endure: the cessation of once-familiar routine, the burden of isolation, the constant, underlying fear of sickness. But their circumstances are complicated by Robert’s disability: He doesn’t understand why the routine he cherishes has suddenly vanished, and he still requires constant support from his team of caregivers. Meanwhile, Ellen — who is 62 and has multiple chronic conditions — has had no choice but to stay away from her son, understanding with searing clarity how dire the consequences could be if either of them contracted covid-19.
This is only one scenario among a vast range of circumstances faced by parents in the United States who support adult children with intellectual and developmental disabilities, who are now grappling with unprecedented challenges and fears unleashed by the pandemic. There are parents who have found themselves separated from children who live in group homes or facilities that have closed their doors to visitors, seeking to protect the staff and residents. There are parents who are caring for their children at home, now struggling with new layers of stress: How to care for someone who is distraught over the loss of a stabilizing routine? How to keep everyone in a shared household safe, especially if family members are particularly at risk of suffering severe complications of covid-19?
Ellen has been worried about the staff members who support Robert, who don’t have personal protective equipment. She dusted off her sewing machine a few days ago, she said, gathering scraps of fabric to make homemade masks.
She’s been thinking lately about how Robert had a major seizure last year and had to be hospitalized. The experience was “enlightening,” she noted grimly: It was suddenly clear to her that the health-care system — even under normal circumstances — “is just not configured for people who have the kinds of issues Robert has,” she said.
In darker moments, she has imagined what would happen if he got sick, if he had to be hospitalized again, without the ability to understand what was happening or communicate with her from afar.
“My absolute worst fear right now is that Robert will get covid-19, because I cannot imagine him in the hospital system as it exists currently, much less as I fear it will exist in a week or two. And then the pain, the pain of not being able to go see him,” she said. “It would be completely catastrophic.”
When she isn’t worried about something happening to Robert, she’s worried about something happening to his staff members, or to her: Who would care for her son in her absence?
“When I wake up every day, the first thing I think is: Will this be the day when things go awry, or will we get another day of the new normal?” she said. “It’s like a giant clock is ticking that I hear all the time.”
In the weeks since the coronavirus pandemic has upended American life, Peter Berns, chief executive of the Arc of the United States, a national organization that supports people with intellectual and developmental disabilities, has heard a multitude of concerns raised by families and professional caregivers across the country. Nearly a million households in the United States include an adult with an intellectual or developmental disability who is living with a caregiver 60 or older, according to the Arc, and many other families help care for grown children who live independently or in supported housing. They each face distinct challenges, Berns said, but also share some universal worries.
“I think, first, there is extraordinary fear and anxiety around folks contracting the virus, especially among folks who often have co-occurring medical conditions or mental health conditions and are at heightened risk,” he said. “And the other general concern is: How do we support people with intellectual and developmental disabilities in isolation?”
There is heightened demand for technological resources to help bring meaningful activities into homes, he said — but for adults with more severe disabilities, even those resources might not meet their needs. Berns said the organization is also focused on advocating for parents who do not have paid leave but now have no choice but to stay home with grown children who have nowhere to go during the day and can’t be left alone. Professional caregivers and agencies that support these adults have also conveyed concern about the lack of personal protective equipment, particularly for workers who must remain engaged in close-proximity care, he said — helping clients bathe, get dressed and eat.
“There’s also a softer dimension to this, an interpersonal side to this situation for folks who have intellectual disability and may have more difficulty understanding what’s happening, or may have behavioral issues that are exacerbated by anxiety,” he said. “The disruption of routine is hugely significant.”
Lisa Pugh, executive director of the Arc’s Wisconsin chapter and the mother of a 20-year-old daughter with an intellectual and developmental disability, says her daughter, Erika, is distraught to be missing her job at a local sports bar. Erika doesn’t read or write, and she communicates using a modified version of sign language, Lisa said — but at her work, she was a valued employee of nearly two years, and she loved to help fold pizza boxes, wipe down tables and greet other employees as they arrived.
“Finding the right sort of job fit for her is really important, and it really helped us to feel as a family really excited about the future because we thought: Here, she’s contributing, she’s building a meaningful adult life, she’s earning money. And that’s all we ever wanted for her,” Lisa said. “This pandemic has put the brakes on those dreams, and we’re not sure if and when those pick up again.”
Erika recently began signing a single word to her family over and over — church, church, church. Lisa knows this means that Erika wants to resume her familiar schedule — to go to church on Sunday, and to work on Monday.
“It makes me so sad that she keeps asking for her normal routine to begin again,” Lisa said, “and I don’t know when that’s going to happen.”
Eileen Lee, a service coordinator for the LifeLinks Class Family Support Center in Massachusetts, an affiliated chapter of the Arc, has had similar struggles with her 32-year-old son, Michael, who has a severely compromised immune system and an intellectual disability. Michael is now homebound with Eileen, 65, and her 71-year-old husband. Michael’s usual routine — the day program that allows him to work at a company where he inventories and refurbishes old electronics, the volunteer outings at local fire stations — has been halted for the foreseeable future.
“Everything has come to a stop. There is just no place for him to go,” Eileen said. It’s not even safe for Michael to go to Tufts Medical Center, where he receives weekly infusions to support his immune system. Now a nurse will come to their home, Eileen said, and she worries about even that level of exposure.
“We are taking this so seriously, because if this disease goes to Michael’s lungs” — she paused — “he’s a goner. There’s no getting around it, and it’s so frightening.”
In the midst of the deepening crisis, and reports that overwhelmed hospitals may ultimately be forced to ration care — potentially prioritizing patients who are deemed most likely to survive — parents such as Eileen and Lisa are left to consider what that might mean for their children.
“I worry about people with disabilities being forgotten, and being generally a lower priority,” Lisa said. “As a mom to somebody with a disability — our families shouldn’t be put in those sorts of positions. Erika’s life is just as valuable as anybody else’s, and she has a great quality of life. In a crisis, we see who we are, and I just hope that the good in everyone prevails.”
The day before Robert's 33rd birthday, he suffered a seizure that lasted for more than five minutes — longer than the seizure that sent him to the hospital last year, Ellen said. But this time, he didn't go to the emergency room. When Ellen called for help, his doctor emphasized that it was critical to do everything possible to keep Robert at home, so Ellen and his caregivers tended to him on their own. Robert was tired after the seizure ended, Ellen said, but he seemed to be recovering well.
The next day, Ellen brought Robert homemade lemon cupcakes for his birthday, a gift-wrapped tub of Lego Duplo blocks and pizza for him to share with his staff. She placed the gifts on the patio table outside his apartment and left quickly, she said, before her son could rush up to her. It was the first birthday of his life that she didn’t give him a hug.
Later, Ellen watched Robert open his gifts over Zoom, and she and her daughter, Robert’s younger sister, sang “Happy Birthday” as he smiled on the screen. Ellen was content that they had done their best to celebrate, that they had created a lovely — if fleeting — reprieve from reality.
That night, she lay down to sleep to the sound of ambulances wailing on their way to a nearby hospital.
“Robert’s birthday was a good day,” Ellen said. “But now it’s not his birthday. It’s another day of wondering when the house of cards between him and his staff, or me, will fall.”