Niv Miron, 23, described by his father, Shmuel, as a “beautiful blue-eyed boy who doesn’t speak,” is autistic and has been in institutional care since the age of 14.
When things are good, he loves music and sports. He normally comes home once a week to Ness Ziona in central Israel, and his mother and father visit him at The House for Life, run by the Alut nonprofit organization, in nearby Rishon Lezion.
Recently, with the introduction of coronavirus-related limits on movement, Niv’s regular outings on a tandem bicycle have stopped. Also gone are fun activities such as sessions with animals, which had been provided by people from outside.
Then on March 25, the Welfare Ministry announced that as part of measures to limit the spread of COVID-19, families would be banned from entering institutions and residents would be prohibited from leaving “until further notice.”
Families wanting to leave packages for their loved ones would thenceforth have to inform staff in advance and then leave the items with the security guard, to be delivered four days later. Communication was to be limited to the digital kind.
And residents who left institutions without permission and wished to return would have to go into isolation to ensure that they had not been infected while outside.
Shmuel Miron has not seen Niv for 12 days now. Staff tell him that Niv is having difficulty sleeping.
“In the early stages of coronavirus, we were allowed to continue visiting,” said Miron, a medical doctor and senior researcher into multiple sclerosis at Sheba Medical Center, just outside Tel Aviv.
“They told us to meet outside in the yard, in the open air. I came with gloves and a mask even before it was obligatory and even though I’m healthy.
“Then there were some cases of coronavirus elsewhere. A social worker was unknowingly carrying the virus. And the Welfare Ministry became hysterical.
“People have to understand. If a grandfather in assisted living is told that his family can’t visit because of coronavirus, he’ll understand. But a person with autism doesn’t have the cognitive ability. Lots of them don’t even speak. They don’t know how to read a newspaper, or what a virus is, let alone coronavirus.
“They have their frameworks and daily routine. They’re used to going home to see their families once a week. The contact is important. If the Welfare Ministry had come and said, ‘Let’s have a break for a week or two,’ we would probably have gone along with it. But as it currently looks, the virus [crisis] might go on for another two or three months.
“What’s the solution here? To weaken the residents to the level that they’ll need treatment for behavioral problems after the coronavirus is over? You have to think ahead.”
Miron continued, “Some people have taken their kids out [of the institutions]. They can’t go back. You can put a person who’s returned from overseas into isolation for two weeks, but not a kid with a cognitive disability. It’s crazy!”
He added: “After a week or two, some of these kids go into distress, which they can’t express and which can lead to them self-harming, lashing out at staff, and even literally banging their heads against the wall until blood comes out.
“Let us visit them. We can wear gowns, masks, gloves, whatever. We can meet them outside, but for God’s sake, if they’re at risk of coronavirus, test them and test the staff that are going in and out all the time!”
Miron said he had written to the welfare minister and director general, begging them, “Give me a Passover gift: a visit with my son.”
He added, “Niv is effectively in prison.”
Sweeping ministerial powers
At 10 p.m. on Sunday evening, the situation became more complicated when the government published a bill that would give the welfare minister sweeping emergency powers to close off institutions for 21 days at a time.
This would cover all 35,000 citizens in institutions, including elderly people, minors removed from their homes, and 17,000 people with special needs, mostly aged 20 to 65.
The public was given 12 hours, until 10 the following morning, to respond.
“Somebody called to tell us,” said Na’ama Lerner, who heads the community department at the nonprofit organization, Bizchut (“By Right”), which acts to advance the rights of people with special needs.
“We sat in the middle of the night to write our opposition,” she said.
Other organizations did the same.
On Monday, Gideon Shalom, director of the Welfare Ministry’s branch dealing with care for the disabled, told a special Knesset video conference on the coronavirus, via Zoom, that 25 residents with special needs had contracted the virus in 16 institutions, none had died, and almost 350 were currently in isolation within those frameworks.
When asked about parental visits, he said, “That’s not the focus at the moment.”
Many parents are at their wits’ end, and at their request, Bizchut hastily helped to create a petition (in Hebrew) against the bill, to be sent out to all Knesset members, the welfare minister and the ministry’s director general prior to a Knesset debate on the bill scheduled for Tuesday.
Lerner said all of the infected residents had caught the virus from staff members.
“On the one hand you turn parents into the people most likely to cause the virus to spread, but on the other hand, with great ease, you let staff enter, without proper protection, without knowing where they’ve been. Some are from manpower companies because extra hands are needed. Who knows where they worked yesterday? And what about all the volunteers?
“Staff members are not limited to going home to see their own families, so why are the residents?”
Lerner said the logical thing was to test all residents and staff entering a facility to ensure diagnosis as early as possible.
“In some places, family members aren’t even allowed to talk to residents by phone, or their phone calls are being limited. If they want to make a Zoom video call, it depends on the goodwill of the staff member with the phone,” he said.
“Families are collapsing and those with the special needs are falling apart,” Lerner went on.
“I’ve had a mother who wanted to tell her daughter face to face that her grandma had died, but the staff said no, they’d tell her at dinnertime on the mother’s behalf,” he said. “Another mother, whose only child is autistic and has been in a psychiatric hospital for years, achieved some kind of balance last year, albeit a fragile one. He was going home for the weekends and being visited on Tuesdays. Now he’s cut off and he’s exploding.
“I have a girl in a psychiatric hospital. The hospital says she’s healthy and wants her to leave. But her father is in his 80s with medical complications and if she goes home, she puts him at risk of COVID-19. Nobody else can take her. If she’s thrown out, she’ll die. But to them [at the Welfare Ministry], it doesn’t really matter if she dies in the street. The main thing is that she doesn’t die from coronavirus on their watch.”
Lawyer Menachem Goldin, legal adviser to Kesher, a non-profit for parents of children with special needs, said, “It’s about resources. The welfare services are talking about how to find alternatives to contact [via digital means], rather than how to provide a solution. This might be testing every resident who returns, testing the parents, providing protective gear for visitors, or arranging sterile areas where everyone can meet.”
Said Goldin, “Parents also have rights to see their children. Especially during the coronavirus [crisis].”