Amid worries that a spike in the rate of coronavirus cases will lead to a third lockdown, no one is more worried about this prospect than the parents and caretakers of adults with developmental disabilities, such as autism. The virus crisis has placed these adults, who already face many challenges, in a complex situation with no easy answers.
While special education schools stayed open throughout most of the pandemic, adults who have autism and other special needs who live in group homes and are over 21 and no longer eligible for special education, have suffered acutely due to the frequent changes in routine and regulations that have, at times, prevented them from seeing their families and from going to their work or day programs for weeks on end. At other times, decisions by the management of their facilities have kept them in even more restrictive conditions than are mandated by law.
In the first lockdown, group home residents were not allowed to visit their families at all. While this is similar to the restrictions on care facilities for the elderly, the key difference is that low-functioning people with autism have difficulty understanding the reasoning behind the restrictions. They may simply feel that their families have abandoned them, which can lead to severe emotional distress and even violence directed at themselves and caregivers.
Itzik Shmuli, the current Welfare and Social Affairs Minister, who took office in May, eased the restrictions on those living in residences during the second lockdown. Shmuli, a special education teacher by profession, understood this difficulty and during the second lockdown, essentially gave the management of each residence discretion about how to handle the situation, which was a welcome relief for families. However, problems arose in some facilities when residents returned after home visits and it was discovered that they had come into contact with people who had the virus or had been exposed to it.
Keeping an autistic person in quarantine alone in a room for 12 days is not humane. Although the stereotype of autistic people is that they want to be left alone, this is simply not correct in the vast majority of cases.
Said one mother of a 21-year-old young man with autism, “He depends on seeing his family on the weekend, he looks forward to it all week. And during the week, he relies very much on the caregivers where he lives. There is no way he could possibly exist in a room alone for two weeks. So I was very worried that I heard that in his group home, someone was exposed to the virus.”
She was relieved that the manager of the group home chose to put everyone into quarantine together and very grateful to staff members who lived there for two weeks on end, sacrificing time with their own families in order to help the residents.
“No one was in a room alone,” the mother said. “The staff are really heroes.”
Besides home visits, another dilemma facing the autistic community is being allowed out to their jobs and day programs, which are critical for maintaining stability in their lives. While in the first lockdown, most programs closed, in the second lockdown, work programs remained open. Unofficially, however, the managers of some group homes have forbidden their residents to go out to work, for fear that someone will become infected. This has continued even after the second lockdown.
Parents of children in this situation are very frustrated, but spots in group homes are so scarce — usually people spend years on waiting lists before they are accepted — that no one would speak on the record about this, out of fear of running afoul of the residence managers and, ultimately, of having their children expelled. Even though the organizations that run these homes insist that all residents are going to their jobs, many parents complain privately that their children are kept in the apartments all day with little to do.
“They bring in people who supposedly get them to do some work, or some kind of activity,” said one mother. “But most of the time, they have no activities. If my son says he doesn’t want to do something, they just let him do nothing. No one encourages him.” The rationale, she said, is that “they could get infected if they go out to work, which is true.” But in her son’s group home, she said, everyone is healthy and in their 20s. “The virus would be less destructive to him than months on end of doing nothing. He gets frustrated, he acts out. He’s deteriorated, in terms of his communication skills and all skills.” Her thoughts are echoed by many parents on Facebook groups for the parents of Israeli adults with autism.
In other residence and work situations, the managers got creative and were able to find more humane solutions. Maurice Kalfon, the director the non-profit, Ami, which provides services, both housing and employment, for children and adults with disabilities in Be'er Sheva and the south, said, “When we couldn’t send them to their employment frameworks, we knew we must preserve their routine.”So they were able to get some of the staff from their employment to come in and “keep them busy all day.” Because of its location in the south, Ami had contingency plans for missile attacks and wars — “We never thought about a virus, though,” admitted Kalfon — that they were able to draw on to cope with the virus. When some residents and staff members got infected with the virus, they were able to move them around so that there was a quarantine apartment where they could all be together and no one had to be isolated in a room.
Kalfon and others in the special-needs community are appreciative of the funding they received from Social Affairs to pay for the protective gear needed for staff members. The ministry confirmed that millions of shekels have been allocated for this purpose.
However, Clara Feldman, the CEO of SHEKEL, an organization that provides community-based services to special-needs children and adults all over Israel, said that while this funding helps, more is needed: “While the Welfare Ministry provided SHEKEL with funding for protective hygiene equipment and gear at the beginning of the pandemic, these are perishable goods which need constant replenishing and ongoing funding. This is just one area of the many extra corona-related expenses shouldered by SHEKEL right now.As an organization working with vulnerable children and adults with disabilities, we have had to develop creative new programs, adapted to current health regulations, in order to continue meeting their crucial needs. In addition, we needed to take on extra staff to work with smaller groups in capsules.
All this has significantly increased our financial burden at a time when local and overseas donations are down. While we have received many accolades and much praise for our work, funding is now critical. SHEKEL simply doesn’t have the means to shoulder these new expenses without substantial financial support.
As the virus continues to spread and it seems that the vaccine will take many months, if not a year, to arrive, people with special needs and their families continue to worry about how they will survive both the virus and the virus regulations. “My son doesn’t talk much,” said one mother. “But lately he has been saying, ‘When will the coronavirus be over?’”