During his three years as a counselor at a hostel run by the Elor organization, Roy (not his real name) witnessed the deficiencies firsthand. “There were autistic people who were left without supervision for hours, mistakes in distributing medication, residents who were locked in their rooms, there was cursing and complaints that went unanswered,” he says, enumerating many other incidents such as fights, runaway residents, self-injury and hospitalizations. “Sharp objects are easily accessible in the rooms, and without supervision, the residents injure themselves every once in a while.”
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According to Roy, the sight of the police van arriving at the complex is routine since counselors are often helpless to control the situation. If other parents knew what was happening in these places, he says, many of them probably wouldn't send their children there.
In January, Ran Weiss, a 31-year-old autistic man, died in a hostel operated by Alut, the Israeli Society for Autistic Children, in Or Yehuda. This month, Haaretz reported that the police are investigating whether his death was caused by negligence. Weiss was left without supervision even though he suffered from a disorder that compelled him to drink large quantities of water.
Since then, Haaretz has received testimonies from about 30 counselors, directors, staff members and parents of autistic children who worked or stayed in hostels managed by various non-profit organizations that provide these services under the auspices of the Social Affairs Ministry. Although the descriptions are not uniform, the testimonies raise a slew of problems that persist in many of the hostels and endanger the lives of the residents.
One such case was Ron (not his real name), a high-functioning autistic boy who committed suicide at the age of 20, after six years of moving between various hostels and closed hospital wards. His parents testified that during this period he became violent and depressed, and barely communicated with those around him. When he once grabbed a kitchen knife at the hostel, the staff summoned the police, who opened a criminal complaint against him.
Naama Lerner, director of the Community Outreach Department in Bizchut, The Israel Human Rights Center for People with Disabilities, says that every year the organization receives dozens of complaints about the hostels. There have already been 24 complaints since the start of 2016. “People report severe distress,” she says. “Someone recently told me that he is greatly restricted in making telephone calls, and isn’t taken for the follow-up and medical care that he needs.”
The hostels are under the supervision of the Social Affairs Ministry, and complaints are not supposed to come to Bizchut. The ministry does not offer a hotline for parents, so those who fear for their children’s welfare can only turn to the hostel administration. However, several parents who spoke to Haaretz said that they were afraid their child would lose his place in the institution if they criticized its management.
The Social Affairs Ministry stated that many parents address any complaint they have to the district supervisors, who in turn work with full transparency to help the family. The ministry also plans to set up an emergency hotline for anonymous complaints.
Haaretz has learned that the ministry’s supervision of hostels is weak at best. “We are almost unsupervised,” says Yoni (not his real name), a former Alut counselor, although the ministry’s policy is to visit every institution once every two months, in coordination with the administration. "The inspections by Alut and the Social Affairs Ministry are conducted when the hostel is not in operation, in other words, when the residents are in an activity center," says Yoni. "They see that the maintenance is reasonable, that everything is clean and the closets are neat. If they find that it’s not neat and clean that’s what the administration reports to the counselors — not comments about working with the residents, but about neat closets and cleanliness.” He adds, “this is a closed institution which is in effect free from scrutiny.”
A report of the visit to an Alut hostel reveals that the subject of the staff and manpower “was not checked due to lack of time,” and the same was true for “consultation with a psychiatrist.” What was checked was mainly the condition of the closets, the bathrooms and the furniture — and these, too, could have been better.
According to the Social Affairs Ministry, “the supervision includes coordinated visits and surprise visits by a social worker, a district supervisor.” An inspection of the physical conditions “reflects the quality of care,” and “if a deficiency is found, it is checked immediately and the ministry acts to repair it.”
The Social Affairs Ministry operates 57 residences for about 1,400 autistic patients through non-profit organizations and private companies. The autistic population has grown by over 25 percent in the past two years. About 150 autistic people are now waiting for a place in a hostel, about 17 of which are operated by Alut. The rest are managed by various organizations, with each hostel housing 12-24 people. Autistic care has been privatized for years; each operator is responsible for building and running the hostels and the ministry pays operators 14,000 shekels a month for each patient. The organizations also rely on donations. Some local governments allocate land free of charge to build hostels, but only for children living under their authority.
Many of the problems in most of the hostels stem from the ministry’s low requirements for counselors — the caregivers closest to the patients who wash them, prepare them food and distribute their medication, the ones who must deal with crises and handle violent outbursts during every shift.
Despite that, training is limited to three to four observation shifts at the hostel. A high school education is sufficient and there is no need for previous experience or a background in caring for the disabled. “Every day without a serious incident is a miracle,” says Revital Lan-Cohen, the mother of an autistic child and a former member of Alut's board of directors.
There is also a permanent manpower shortage. Low-functioning patients are often left unsupervised, and there isn't always one counselor available for every four residents, as required. This may be due partly to the unattractive work conditions: 200 to 250 hours per month earning minimum wage, with almost no prospects of a promotion. It’s not surprising that counselor turnover rate ranges from 40 to 50 percent annually.
Yonatan (not his real name), a high-functioning autistic patient in his 20s who is also bipolar, who after years of struggle managed to leave the hostel and rent his own apartment. In hindsight, he points out the failures of the hostel operated by A.D.N.M.: “The staff was unskilled — counselors who shouldn’t be with the disabled and the emotionally disturbed."
“They would make fun of us, drag us around the room. There was a resident who would bang his head against the wall until there was blood on it. The staff didn’t try to calm him down or comfort him or give him a sedative; instead they lectured him,” he recalls. Although it’s hard for him to live alone, “in many ways it’s easier than the hostel. They didn’t understand me.”
One of the most problematic issues is the distribution of medication. According to ministry regulations, medicine must be administered by a nurse, or by two authorized counselors if one is not available, in order to avoid mistakes. Two former counselors testified that mistakes were made and procedures were not followed.
The ministry said that every case of a violation of regulations is dealt with firmly.
Death in the hostel
The Alut hostel in north Tel Aviv is a different place with a different atmosphere: spacious rooms, sparkling clean corridors and large game rooms. In general, Alut hostels differ from others, which is reflected by the longer waiting list. But even the hostels managed by this veteran NGO are not without problems. In addition to the death of Ran Weiss, in February there was another death in an Alut hostel, which the ministry began to investigate only a month and a half later — claiming that the deceased’s family doctor was on vacation.
In 2013 Alut’s financial turnover was 137 million shekels ($36.5 million), its assets were estimated at 165 million, and the director’s annual salary was 450,000 shekels. In 2015, when most of the parents who sat on the board of directors resigned, the organization did not convene a general assembly in order to find out why such a large group had left, some just months after assuming their seat.
Many of those who resigned started the Yozmot Hashiluv ("Integration Initiatives") association to promote the integration of autistic people of all ages and all walks of life into the community. Their letters of resignation indicate that much criticism is directed at Alut’s focus on residents in its hostels rather than on the entire autistic population.
Recently it was discovered that Alut has agreed to another controversial move: a bill for the advancement, rehabilitation and integration of autistic people into the community, with programs to be partially financed by cutting the allowance for high-functioning autistic people.
Parents opposing the bill claim that it’s not only a problem of “low versus high-functioning” residents. Many parents of low-functioning autistic children want housing for them in the community, and the bill offers no solution — it provides only hostels. They also fear that cutting the allowance will lead to the deteriorating condition of high-functioning autistic individuals.
Each year there is a significant increase in the number of people diagnosed with autism in Israel, as is the case worldwide. Estimates show that one of every 100 infants is born with autism. The Social Affairs Ministry attests that there is an annual increase of about 15 percent in those diagnosed with autism: 12,000 were recognized by the ministry in 2015, compared to only 2,320 in 2005. There is currently no official figure on the number of autistic people living in Israel, but they are estimated to number around 20,000.
The increase has led to a serious shortage of a framework for autistic individuals. For families who are on waiting lists, or don’t want to put their children in hostels, there is no alternative — there is no residential housing within the community, or dwellings for smaller groups.
The Social Affairs Ministry said that it operates several models in addition to hostels, such as housing for four adults, as well as supervised housing for individuals who receive a support while living independently within the community. Haaretz learned that the program budget is 1,200 shekels per person a month and it has only a few dozen participants, only a minority of them autistic.
Today a person with autism who lives at home receives a 2,400-shekel basic monthly disability allowance. A low-functioning person can also receive a Sharam Special Services Benefit of about 3,000 shekels. In other words, an autistic person who receives the highest allowance doesn’t even begin to approach the sum that the government would pay a hostel to take care of him.
The Social Affairs Ministry said that autistic people living in the community also receive a variety of services, totaling thousands of shekels.
“Bizchut repeatedly claims that it’s preferable to encourage people with disabilities to live in independent housing or with parents and a close companion, and to give them supportive services,” says Lerner. “That’s certainly cheaper, safer and right for them. It will prevent behavior problems stemming from intensive living with others and will enable greater implementation of the right to autonomy and privacy.”