Honest Reporting BY RACHAEL WURTMAN
Israelis with disabilities and their families are struggling to stay healthy and to adjust to the new normal of the coronavirus lockdown.
Imagine having a child who refuses to make eye contact and instead bangs his head on the floor. Or who cannot see or hear or follow instructions. Or who only touches your face. Imagine having a premature infant undergoing evaluation for unknown multiple disabilities.
Imagine having a spouse who suffers from PTSD and is easily triggered. Or is having wild mood swings, but it’s already been more than a month since seeing the psychiatrist.
With medical personnel and caregivers themselves in quarantine and restrictions on public travel, in-person services for Israelis with disabilities have halted abruptly, including special education to teach basic skills speech as walking, reading or socialization.
Some Israelis with disabilities require 24-hour care. Children of all ages — newborn to adult — have significant medical, behavioral, or psychiatric needs that cannot be addressed at home. But the coronavirus has shown how rapidly it can spread through group homes and residences.
Protecting Israelis With Disabilities
ALEH serves 750 of Israel’s most vulnerable people at four sites around the country: infants, children and adults with significant disabilities, chronic illness, compromised immune systems, and weak respiratory function.
Residents arrive as children and often remain for their entire lives; the oldest resident is in his 60’s. According to development director Elie Klein, 30 residents — including babies — are on breathing machines.
Most of the residents have cognitive disabilities and more than 90 percent are nonverbal. They communicate through touch and pointing. One girl, completely paralyzed except in her eye muscle, speaks through eye gaze and a special machine. It’s very difficult to keep these residents safe. Staff cannot stand six-feet away. Residents — adults included — suck their fingers and touch their faces. They refuse to wear gloves. They cannot wear masks because they could aspirate.
ALEH’s solutions: Staff cover their entire bodies with protective clothing and self-quarantine at residences when necessary. With augmentative alternative communication, such as, for example, illustrated flash cards, symbol charts or speech-generating devices, residents are taught rules for handwashing, and that for the time being, there are no hugs or visits. (Parents stay in contact by phone.)
The new isolation requires adjustment. ALEH’s facility in Ofakim is integrated into the larger community. More than 1,100 international volunteers participate in programs and hundreds of children attend the special education school. Klein reported that residents miss seeing the volunteers, whose presence is an integral aspect of the program. A girl who speaks by “fluttering her eyelashes and grunting, lit up when she heard the volunteer’s voice on a video call.”
Israelis with disabilities live in residential programs if they require 24-hour non-medical supervision. One example is the Jerusalem-based Alei Siach, where 100-150 children and adults with autism live.
“We had to decide whether to send them or leave in apartments [residences]”, said Chaya Levi, nurse and director of the Autism Program, “Their families can’t take care of them; because of their behavior challenges: self-injury or running away.”
Alei Siach is Orthodox and some families are Haredi. Levi said that because families are large, managing behavior is unusually stressful. Particularly now, when all of the children are at home.
Levi described the residents’ adjustment to their current isolation as “very difficult for all of them”. The routine is different, they aren’t going to school, and they have to stay in a closed space. Further, many of the children are nonverbal. They can’t explain what’s wrong when they are sick.
A ten year old boy was lying on the living room couch, apparently not feeling well. It was too dangerous to send him to a hospital. Levi spoke with the mother and eventually they realized the boy had an upset stomach.
Alei Siach’s staff use augmentative alternative communication to explain the current situation, and show movies and play games in lieu of other activities. But the lockdown means fewer staff. Those who are available work longer shifts.
Israelis with disabilities may have serious psychiatric issues that prevent them from living independently. Enosh, the Israel Mental Health Association, offers multiple levels of supported housing for 6,000 clients.
The organization believes in supporting people within their communities . So clients and family members participate in housing, job, social-recreational, and family counseling.
Liron David, the organization’s director of international relations said that all of the programs are “based on human contact,” and were forced by the pandemic to shift the entire program (except housing) to an online approach. “It has been very challenging,” she added.
During the previous three years, Enosh has prepared for other types of disaster: missiles from Gaza, earthquakes and terrorism. So they continued residential programs with the addition of isolation rooms in case of illness.
In general, Enosh’s family counseling centers are a hub of activity. Family members of individuals with psychiatric disability receive “support, information about the illness, treatment options, rehabilitation services in the community.” To address an uptick in demand, four hotlines related to psychiatric disabilities were set up specifically for:
• parents of youth.
• family members.
• people with mental illness.
• a support line for staff.
“Many people are more lonely; we are trying to be there,” David said.
Hotlines in High Demand
hotlineIsraelis with disabilities may feel increased anxiety at this time. Am I doing what I need to do to keep myself safe? What if I need help? Will anyone be there?
Parents of Israelis with disabilities have many reasons for anxiety: Will my child stay healthy? Will they recover from the loss of school , therapies services and psychological counseling?And perhaps the most gut-wrenching question: Who will take care of my child if something happens to me?
ERAN: Emotional First Aid by Telephone and Internet has a dedicated hotline for calls related to anxiety about COVID-19. Demand has spiked significantly because of the coronavirus. Last year the hotline received an average of 530 calls per day. Today, it receives approximately 1,400 by phone or by internet.
Dr. Shiri Daniels, executive director of counseling, explained that in response to the crisis, ERAN:
• Created an anxiety division which deals with 60% of the calls.
• Doubled the shifts.
• Recruited more professionals to respond to calls in Hebrew, English, Arabic, Russian
“People [who are] dealing with previous mental health problems, find themselves in severe distress,” she said.
Israelis with disabilities have access to diagnosis and treatment “using online resources, phone lines to consult with professionals, and intervention and even diagnostic work using online communication tools” reported Dr Judah Koller, Associate Director of the Autism Center at Hebrew University.
Parents may also contact the moderator of a “Hebrew-language autism Facebook groups , an essential resource for families who find themselves at home with children who typically receive 6-8 hours of special education a day.”
Israelis with disabilities and their families face unique challenges during these times. Avoiding illness and finding alternatives to the array of special education and other services can be difficult. But Israeli nonprofits and professionals are here to support them.
Rachael Wurtman is a journalist and writer in New England. She is a member of the Israeli Bar and a graduate of the University of Pennsylvania Law School.