Fighting for their rights

Many parents of autistic kids, still need to go into battle to receive gov't assistance they deserve.

JPOst TV logo 370 (photo credit: The Jeruslalem Post News)
JPOst TV logo 370
(photo credit: The Jeruslalem Post News)
Beverley Bayliss will never forget the last time she took her two young sons out alone on a day trip to the Israel Museum in Jerusalem.
"We were in the playground near the youth wing when suddenly both boys ran off in different directions," she recalls. "I lost sight of Yoni (then aged four) but managed to keep my eyes on Eitan (then two). A little while later I saw Yoni walking back towards me with a security guard who said he'd found him running between the cars in the parking lot."
The incident was every parent's nightmare and, quite rightly, Bayliss was extremely spooked by the whole episode. She has not left her house on her own with the two boys ever since. It's been five years.
"When I'm in the house alone with them I lock all the doors and windows so that no one can escape," says Bayliss, who now lives just outside Jerusalem in Maoz Zion.
"When Eitan was a baby it was still okay, I could go out with both of them because he would be strapped into the stroller, but from about the age of two and a half, I could not leave the house with both of them because I would ultimately lose one," continues Bayliss, who made aliya from Britain with her husband, Mike, in 1999. "If I took them out to the shops Eitan would always manage to get himself out of the stroller and run away. The two of them would run in different directions and I would be left standing in the middle trying to decide who was in the least danger and then chase after the other one. I couldn't even call after them to stop because neither of them would respond."
It's not that her sons are particularly wayward, she explains, but rather that they both have a communication condition known as pervasive developmental disorder (PDD), a mild form of autism.
"Its very, very demanding," admits Bayliss, adding however, that, "her children are a big blessing and they can be very loving too. In most situations I just assess what is more urgent. I think parents of autistic children need to have a sense of humor about it."
While humor may certainly help cushion the stress for families of autistic children, Nomi Wenkert, coordinator of the family center at Alut, the Israeli Society for Autistic Children, in Jerusalem, says that the parents are still faced with "neverending coping," "little opportunity for respite," and serious financial strain.
"Autistic children have no physical traits that set them apart from anyone else," she says. "Their understanding of the environment around them is different to most people and their ability to communicate with that environment is extremely difficult. This affects their sensory world and gives them a different sense of the world," says Wenkert.
She adds that today autism is viewed as a spectrum from "high functioning," meaning fewer impairments, stronger verbal skills, and the ability to keep up academically with peers, to "low functioning," with less verbal development and not on an academic level with other children his/her age.
"There has been a large increase in the number of autistic children in Israel and a larger request for frameworks for young children with the condition," says Margalit Tirosh, director of Alut, which has officially named March "Autism Awareness Month" and on Tuesday is initiating a special fund-raising drive to raise money for autistic families. "There is a severe lack of manpower to answer the needs of children with autism and their families."
According to statistics collected by the organization, one in every 240 children has some level of autism. And Alut, backed by the Social Affairs Ministry and private donations, provides services to more than 200 infants and toddlers, as well as assisting 3,500 children in their educational frameworks and 400 adults living in sheltered accommodation or working in special-needs occupational centers.
"I THINK the picture most people have of an autistic child is that they sit in a corner and bang their head against the wall," says Bayliss. "Even my own idea was from the film Rain Man [starring Dustin Hoffman as a non-communicative autistic man]."
"When I found out that Yoni had autism, my first reaction was of complete shock," she says. "My husband took it very badly and cried a lot at first, but I am good at coping with difficult situations and in a way it was a relief for us to know what it was that made him different."
The family settled Yoni into a special communication kindergarten, where he would receive a range of therapies to help him understand the world around him.
Outside of the long school day - special-needs children are entitled to education from 7:30 a.m. to 4 p.m. - there are numerous other statutory rights that parents must fight for.
"Parents of children with autism are entitled to all kinds of reimbursements from the Education Ministry and other agencies, but just finding out about those programs and actually getting the money is full-time job," says one frustrated mother of an autistic son. "Very few employees in these agencies will tell you what you are entitled to. I found out from Bizchut [an organization that safeguards the legal rights of disabled Israelis] that my son was entitled to have his own computer at his school, because he learns a lot from computer programs and his school did not have a computer available for him.
"The lawyer at Bizchut suggested I contact Matia, which is responsible for providing services such as teachers and equipment to special-needs children. I got a time-consuming runaround from Matia. They asked me for letters from all kinds of specialists and school officials, which I provided, but in the end they refused to authorize the funding. Finally, I just took on extra work assignments and paid for the computer myself, which actually took less time than getting it through the system would have.
"Multiply this example by about 500 and you have an idea of what parents of autistic kids are up against in Israel. In six years of dealing with the special-needs bureaucracy, not one government employee in this system has ever returned a phone call. And when you call them, they're always 'in a meeting.' Most parents eventually give up and their children do not get the services they are entitled to."
YONI'S TEACHER encouraged his parents to also find help outside of school hours.
Most families must deal with these difficult, sometimes destructive, children on their own or find suitable babysitters and helpers that can minimize the stresses of daily life. Plus, if a family chooses to send their child to classes in a "regular" school then it must also find and finance a "sayyat" or helper to stay with child throughout the school day.
"Yoni was ruling our household," says Bayliss. "He would scream and scream until he got his own way, there was no way to discipline him. Then a young woman, a student of special education, came to help out two or three times a week. She organized the household and gave us tips on how to find out what why Yoni was screaming and help him calm down. Usually it was because he was confused about something and we just needed the time to sit with him and find out what it was."
Families do receive a monthly disability allowance from the National Insurance Institute (up to NIS 2,000 per child); some financial aid for after-hours assistance, including holiday retreats and after-school activities, from the Social Affairs Ministry; and Education Ministry stipends for children integrated into regular classes with assistants. However payment for informal babysitters and helpers is extremely low - a little above minimum wage - for a job that is mentally trying and physically hard.
"Working with a child who has a communication difficulty is extremely challenging," says Wenkert, whose family center keeps a database of local babysitters and helpers prepared to work with autistic children. "Emotionally, they [the helpers and babysitters] have to teach the children how to behave and sometimes also act as translators for the child. The job asks for high-quality workers but pays them a very low salary at worst and mediocre at best. It is amazing that these people are even available."
She says the helpers are usually a mixture of students looking to gain some insight into their future profession or simply people who want to contribute to society and get sucked into the magic of working with an autistic child.
Such assistants are usually employed by manpower agencies under the auspices of the Social Affairs Ministry and the local authorities, confirms Lily Abiri, director of the Autism Department in the Social Affairs Ministry, which only in the last four years has taken over responsibility for caring for autistic children and adults.
"We try to help the families as well as the children," she says. "Together with Alut, we provide information, support groups and after-school clubs for the children and their families, as well as a retreat for the children to give the parents a break and babysitters who come to help them in their homes."
Abiri refuses to discuss how much these "babysitters" are paid but does admit "it might not be enough."
"The ministry pays what it can afford according to our budget," she says.
For those who work informally with autistic children within the regular school system the salary is a little higher, says Wenkert. "The Education Ministry decides how many hours a week a child is entitled to receive an assistant, usually somewhere between 10 and 30 hours, depending on the need of the child and his/her resources."
But for many, the government's financial assistance is just not enough and families must subsidize the babysitters and school helpers from their own pockets.
"Social services grants us a helper for 40 hours a month for both children and the disability allowance is about NIS 5,000 [if there is more than one child in the family they receive an extra allowance]," says Bayliss. "All of the money goes to babysitters and replacing things that get broken around the house on a daily basis (Yoni smashed the family TV not so long ago)."
"At least one parent can't work full-time and, in many cases, even the breadwinner has to take time off from work to take the child or children to therapy. The children can't usually be left with regular babysitters such as family members because they are just not aware of how to deal with autistic children," explains Wenkert, adding that the subsidies paid by families to their helpers are not legal "so I can't comment on it."
TWENTY-NINE-year-old Vered Sapir works three times a week with an autistic child in Jerusalem. As well as acting as his guardian angel in school and working with the teacher to enhance and improve his overall learning experience, she also takes him to occupational and speech therapy twice a week.
"I would not do this work for NIS 20 an hour," she says, referring to the minimum wage. "The family I work for tops up my basic salary but not all families can afford to do that. If I worked for someone else I probably would not earn as much."
"I think that someone probably needs to clarify what this work actually is," reflects Sapir. "I guess no one has thought this important enough to deal with up until now. If it were turned into a serious profession, it would definitely improve the treatment the child receives.
"Personally, I took this job so that I could get to know the subject better," continues Sapir, a student of psychology at the Hebrew University of Jerusalem, who took the job to gain some experience working with special-needs children. "I knew that it would not be easy work but it is really, really difficult. It is impossible to do this work for a long period of time… I think that the helpers and assistants are not appreciated enough."
"An assistant needs lots of patience," says David (not his real name), a married father of two who was hired by a family to oversee the educational and emotional development of an autistic boy about to enter first grade. "I have to manage the school staff, the family and of course the child. Everyone is busy and I have to try to persuade all of them to give me a minute of their time. Once a week I meet with the family and once a month with the school staff.
"I believe that autistic children should be in a 'normal' environment," he says. "It is good for them to see other children in order to emulate them. Autism has all different levels and each child has his own potential. Our goal is to find the potential of every child and to improve on that."
Even though the family he works for bumps up his salary, the Haifa resident says he is fully aware of the low pay for others who undertake work with autistic children on an informal basis.
"Those who agree to send their children to special-needs programs are likely to get more assistance," he observes, adding that his initial salary from the Social Affairs Ministry comes out to NIS 18 an hour but that he also receives subsidies from the Education Ministry, Alut and other national disability organizations. "NIS 18 is about what your average babysitter gets paid."
David says he fell into this work by mistake. "I used to work for a hi-tech company and was an engineering student but answered an ad in the newspaper to work with an autistic boy because I wanted to make a difference to someone's life."
"The pay is okay, but the satisfaction is that if you do this work properly then an autistic child can really succeed and move on from where he is to do things he's never done before," says David. "Of course there are difficulties, but if the process is done properly and the child is happy, then you are happy too. And I see the results every day."