There are currently 246,000 children (up to the age of 18) with disabilities living in Israel, more than half of whom have learning or behavioral disabilities. By definition, this includes children with physical, cognitive or mental disabilities who have limited vision or hearing or who suffer from a chronic illness. These children require endless care and patience from their parents, who put them at the center of their lives, often at the expense of their other children, their marriage and their career.
In honor of International Day of Persons with Disabilities, which took place earlier this month, a report prepared by JDC-Israel and the Myers-JDC-Brookdale Institute in 2018 showed that parents of children with disabilities deal with difficult situations on a day-to-day basis.
According to the study, 95% of parents of children with special needs claimed they are in great need of financial assistance; 89% reported they are in need of missing information; 89% reported they need more days off from work to take care of their children; 86% noted they need increased disability benefits; 76% reported they need one-on-one instruction on how to care for their child; 70% reported a lack of a support group; and 64% reported they need assistance in reentering the work force.
Noa, whose daughter was diagnosed with childhood-onset schizophrenia when she was 10, described how her family copes with the situation. “This is an extremely rare disease,” says Noa. “Many times children show signs of the malady in their teens, but as of today, no one knows what sets it off. At first, professionals often think the child is having behavioral problems, or sensory integration [disorder]. At first we felt so lost, as we went from one doctor to another searching for help. But no diagnosis ever fit perfectly.”
Eight years have passed since that initial diagnosis, and now Noa has switched careers to social work from teaching. Today, she works at Milam, the Israeli Mental Health Association. “At first, my daughter went to the regular neighborhood public school. It’s going to take a lot of work until people there learn how to accept and not be afraid of people who are different. They don’t need to be scared to ask questions. Back at the beginning, we paid a ton of money for private psychologists, but we still felt like they preferred that our daughter not attend a regular school. In the end we found that a regular school wasn’t the best solution for our daughter, but there are many cases when it is, and the school should allow this since it’s better for the child and also a great way for all the kids and adults to learn tolerance.”
Noa says that all families with children with disabilities endure hardships. “The siblings are heavily affected, too. We speak with all the siblings’ teachers and school psychologists, but we get the feeling that not much is actually done for them, and the siblings don’t end up receiving much support, even though they desperately need it.”
Do families receive more support nowadays?
“I wish they did. That’s why I decided to go work at Milam. There are a bunch of nonprofits that support families, but this isn’t enough. Granted, the situation is not as bleak as it was 20 years ago, but that’s not saying much. Parents should be allowed to take more paid personal days from work. I had to reduce my work load to a third of the time, but that came with a huge salary cut, which makes it difficult to make ends meet. But I have my priorities. And I admit that my parents have been very generous and helped me financially. It’s a horrible feeling to not have enough money.”
“The issue of disabilities is very complex,” says Dr. Rami Sulimani, director-general of the Joint Distribution Committee-Ashalim. “Moreover, we have very little data, especially in the most critical area: early childhood. This is mostly a result of the difficulty of locating children with disabilities due to segmentation between offices, which prevents us from getting to the root of the problem. For communities in which it’s more challenging to identify children with disabilities, children are starting treatment much later than they should. Families in low socioeconomic communities often don’t receive treatment in a timely fashion.”
To date, the Joint and the Welfare Ministry have established 45 family centers, which cater to 5,000 families throughout the country. “The aim of these centers is to enable families to meet with professionals and with each other to talk about their hardships, participate in workshops, acquire all the necessary information about their rights and benefits they can receive from the government, develop leadership skills and enjoy leisure activities together with other families,” continues Sulimani. “We began operating in just seven communities, and by the end of the year we will be operating 60 centers. Children with disabilities must be integrated better into society when they’re still in kindergarten. This phenomenon is really taking off now and awareness is increasing.”
According to Yuval Wagner, founder and chairman of Access Israel, many people are not aware of their rights. “Our biggest challenge now is getting information out to the people who are in need of it. We also need to increase the disability pensions people receive. Families of children with disabilities aren’t given enough money.”
S. is a mother of six children, three of whom have been diagnosed with ADD, Tourette syndrome and autism, respectively. “I don’t work because taking care of my kids is a full-time job,” she says. “There’s no way I’d be able to hold down a job since all day I’m busy running from one treatment to another, and appointments with psychologists, speech therapists and specialists. What boss would hire me when I’d have to be running out all the time to take care of these appointments?”
“S.” does not agree with the assessment that it’s difficult to access the necessary information. “Everything is available on Facebook. When I was told my son has Tourette’s, I googled it right away. And when they told me my daughter was on the spectrum, I went onto Alut’s website and they referred me to a special-ed kindergarten where parents meet up with a psychologist every other week. It’s not like when we were kids – teachers told my husband he was a bad boy all through his school years. Nowadays, teachers tell parents, ‘Let’s figure out what’s going on with your child and deal with the problems.’
“Could be that if my husband had received help, he would be a more productive adult. Nowadays, there are so many support groups online that offer emotional and logistical help. I think it’s important to integrate children with disabilities into regular classrooms. Many children, including my own, have invisible disabilities, which are not always noticeable straight away. Often people make comments, such as ‘What a disruptive, poorly behaved child.’ It’s not enough to increase awareness – only when kids spend every day with children like this will they really understand.”
In many cases, parents don’t know who to turn to, whether it be the Education, Welfare or Health ministries, says Dr. Adi Sharabi, head of Special Education at Seminar Hakibbutzim College. “All of these offices need to work in sync with each other. We need to offer a holistic approach. Families need to have a case worker who can work with them over a number of years and make sure they’re getting the right care. Families need extra support when their child is being integrated into a regular classroom so that they can deal with all the added pressures.
Some families still have a hard time accessing all the relevant information and sometimes their cases don’t get processed in a timely fashion, says Moran Samuel, an Israeli paralympic rower, who works as a physiotherapist and has helped many families overcome obstacles. “In the US, parents who give birth to a child with disabilities automatically get sent a package with instructions about their rights and lots of information about nonprofit organizations, sports and leisure activities.”
According to attorney Orit Amitai, a mother of a five-year-old boy with special needs, who is also a social activist on behalf of adults and children with disabilities, the question every parent of a child with disabilities worries about, regardless of how well they know how the system works, is: What will happen when I’m gone? Who will oversee their care then? “Many families begin their child’s life in a state of mourning. They have to deal with the loss of the dream of having a normal child whom they could raise to become an independent adult.”Translated by Hannah Hochner.
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