The Strain of Pandemic Restrictions on Disabled Adults and Their Families
Father, Perry Blatz, shares his son’s experience living in a Pennsylvania group home during the COVID-19 pandemic
The pandemic has caused many to fear the presence of their fellow human beings and has led innumerable institutions to limit opportunities for such contact. Individuals with intellectual disabilities could neither participate in the decisions that curtailed their opportunities for human contact nor could they readily understand shifting rationales for such decisions. The only substitute offered for much of the human presence they need to thrive was greatly increased time in front of screens and paltry efforts at virtual programming. Of course, for most individuals with special needs, such programming had never been seen as an effective substitute for in-person programming based on direct, even one-on-one contact.
My otherwise healthy 35-year-old son has moderate to severe autism and has lived in a group home for more than ten years, a few miles from me and the home where he grew up. When the pandemic began, rules promulgated by the state closed most programs for special-needs individuals. Between a work program and an afternoon program, my son usually had been outside of his group home from early in the morning until 6 p.m., Monday through Friday. I would fit my visits around that schedule. But that programming ceased with the state’s orders. Group-home residents, like other citizens, did not lose the right to leave their homes for a walk. However, some residents, like my son, require 24-hour supervision. Due to what may have been a generous ruling by a supervisor, I was allowed to take my son for a physically distanced walk each day without violating the state-mandated quarantine. Otherwise, he would have had no chance to get outside of the group home for the pandemic’s first two months.
“While the burden of COVID-related issues will wax and wane across future months and perhaps years, the rightful place of special-needs individuals amid the priorities of the pandemic will continue to deserve a consideration it has been denied.”
At the end of that first stage, I could take my son from the group home without restrictions. Such visits were practically his only opportunity to get out until October of last year. His work program could not reopen until July, though my son did receive a weekly telephone call from staff. While these calls were well-intentioned, they could only qualify as the most limited contact for my son. I have never seen him have a telephone conversation that went beyond one minute. But regulations from Pennsylvania’s Office of Developmental Programs enabled work programs, under certain conditions, to receive reimbursement from the state for calls to clients.
Once allowed to resume operation by the state, my son’s work program informed parents that it could only bring back a small number of clients at a time due to the demands of sanitary procedures and distancing. As I learned that other clients, but still not my son, had been invited back to work, I complained to the program’s managers in September 2020. I asked them to consider whether the state’s guidelines for sanitary operation necessitated that the program discriminate against some special-needs clients in favor of others. In October my son returned for an occasional hour, and late in November, he was allowed to attend for four hours twice a week. But as COVID infection rates grew, the program was closed early in December through January 2021. Since then he has attended his work program three days a week for four hours a day.
During the last fifteen years, or about as long as my son has attended the work program, he has also attended an afternoon program run by a local, faith-based non-profit organization. The program gave him beneficial social contact through carefully planned activities with other special-needs individuals. The program was closed in March 2020 and remained closed through this summer, but it has announced plans to reopen soon. The organization resumed most of its usual programs for a wide range of groups more than a year ago. It even added a new program to monitor students while they pursued online learning through the local public schools, which suspended in-person learning through practically the entire 2020-21 school year. During those months, parents were informed that the special-needs program would resume when “safe.”
In a world that reflexively prioritizes COVID concerns, the long-awaited reopening of my son’s afternoon program presents its own complications. Soon after announcing the reopening, the organization that conducts the program recently declared a vaccine mandate for all adults who enter its buildings. Since my son is quite averse to any invasive procedure—even having his nails trimmed—he refused vaccination at his group home months ago. For other injections, I have worked with my son’s physician to surprise him while I hold his arms so he can’t flail them. Unfortunately, physicians throughout the United States have no access to the vaccine. The search for a cooperative provider continues, delaying indefinitely my son’s return to the afternoon program. While the burden of COVID-related issues will wax and wane across future months and perhaps years, the rightful place of special-needs individuals amid the priorities of the pandemic will continue to deserve a consideration it has been denied.
“The isolation experienced by special-needs individuals, like that visited upon so many of society’s vulnerable through pandemic restrictions, receives little attention because those touched by it are unable to speak effectively for themselves.”
At least I have been able to visit with my son practically every day from the beginning of the pandemic. Of course, he had been accustomed to a much greater variety of people and activities, and like most 35 year-olds, too much time with a parent may well engender feelings of dependency. But considering the enormity of isolation during the pandemic, we have been lucky. Unfortunately, most special-needs individuals living in group homes have had all-too-few opportunities for human contact other than the truly impressive, caring, and unstinting efforts of direct-care personnel. Beyond basic work programs, so many other activities once offered for special-needs individuals—camps, visits to parks and zoos, occasional parties, etc.—will take quite some time to return. Especially if such good works depend on volunteers, requisite planning is likely to have a low priority amid numerous COVID variants and the fears they produce.
It can not be easy to measure the impact of isolation, while we can not avoid data on COVID cases, rates of infection, and the models they breed. The isolation experienced by special-needs individuals, like that visited upon so many of society’s vulnerable through pandemic restrictions, receives little attention because those touched by it are unable to speak effectively for themselves. I can not imagine that the officials who made the decisions that closed special-needs programming thought carefully about how much damage their decisions would cause to individuals around the world. All I can hope is that one day, those responsible for decisions that have unleashed such isolation will take advantage of the solitude that life offers to reflect fully on what they have wrought.
Perry K. Blatz is a retired history professor who lives in western Pennsylvania in the United States. For help and encouragement with this piece, he would like to thank his son, Kevin.
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