A pupil looking out the window while waiting for his parents at the Turmalin Social Rehabilitation Center. (c) Maria Alekseeva/RIA. All rights reserved.Russia ratified the UN Convention on the Rights of Persons with Disabilities in 2012, and there was talk at a government level about the need to create inclusive schools and colleges for Russia’s children. But five years on, disabled people are still missing out on educational and employment opportunities.
I spoke to parents, teachers and NGO workers about this situation. Here are their stories.
In search of a diagnosis
Nine years ago, Yulia and Oleg (not their real names) had a son, Sasha. At that time, Oleg and Yulia were living in Kaliningrad, a Russian exclave between Lithuania and Poland.
By the time Sasha turned three, he could barely talk. He was prone to tantrums and moods, but after his first time on an aeroplane, he fell in love with them. Now his room in the family’s low rise flat in Gdansk, Poland is full of model planes (more than 100, according to Oleg) constructed by his parents from kits or bought readymade. But they are all civil aircraft, Sasha doesn’t like military planes. You can study his models for hours — but don’t touch or move them, it makes him anxious.
Yulia and Oleg didn’t immediately realise that Sasha was autistic.
According to Yulia, at 18 months, there was a “rollback in his development”, and Sasha stopped learning to talk: “There was clearly something wrong, but no one mentioned the possibility of autism. Until he was three, all the doctors, from our local paediatrician to the best neurologists in Kaliningrad, ignored our concern. Their standard response was, ‘Don’t worry, Mum: he’s a normal boy, he’ll start talking’. But when he turned three they all started looking at us wide-eyed and saying, ‘’He’s not talking yet? What are you waiting for?’”
Oleg and Yulia began taking Sasha to a speech and language therapist and an additional needs specialist, but with no success. They then searched for other specialists, but in Kaliningrad no one knew how to deal with children with autism. They even went to St Petersburg, but couldn’t find anyone there either. They enrolled Sasha for half days in a nursery for children with speech and language difficulties, but were soon asked to remove him — the staff just didn’t know how to deal with “different” children. Then he enrolled in a private nursery, but it was the same story there.
Nursery staff just didn’t know how to deal with “different” children
In the end, Sasha was diagnosed with attention deficit hyperactivity disorder (ADHD), but his doctors had no clear ideas about how to treat it. “They said, Let’s try this medication. Hmm, that’s not working. Let’s try another’”, Yulia tells me. “This went on for another two and a half years. Sasha’s developmental delay became more and more obvious, but we still weren’t being diagnosed for autism.”
One psychologist suggested taking Sasha to visit “holy places”, and a paediatrician advised Yulia and Sasha to put him in an institution for children with developmental delay and have another child. In the end, the family decided to look at what other countries could offer their son.
With the help of friends in Poland, Yulia and Oleg got an appointment for Sasha at an educational centre for children with autism near Gdansk. They had to wait six months to be seen, but were finally given a diagnosis and persuaded the centre’s director to give their son a place.
Institute for Child Development, Gdansk, Poland. Source: Institute for Child Development. Despite the fact that the teaching would be in Polish and fees were $600 a month, Oleg and Yulia decided to move, and within six months they had arranged for the full fee package to be funded by the nearby city of Gdynia.
Today, the family is delighted with the result of all their efforts. Sasha, Yulia tells me, has made an enormous leap in his development and is now in the first year of a special school, where he gets taken every day in a free taxi.
There is nothing even resembling this school (not to mention the taxi service) in Kaliningrad. Yulia and Oleg are aware that inclusive schools are appearing in Russia, but are sceptical about them.
According to Oleg, people they know in Kaliningrad who also have children with autism complain about the lack of differentiated curriculums and additional needs specialists in schools. The family is not planning to return to Russia any time soon.
“This isn’t the place for children like that”
All too often, Russian schools try to avoid taking any children with additional support needs. In 2014, for example, Svetlana Paliy, the head of Kaliningrad’s School No 10, compelled parents to write a letter asking for children with special educational needs to be transferred to special schools. Paliy argued that these children couldn’t follow the standard curriculum and “would present a certain threat to other pupils”. Given that there were no places available in either special or inclusive schools, the parents were totally taken aback by her behaviour.
Some families, afraid that their children might end up without any education at all, try not to have them officially diagnosed if their learning difficulties are not too severe — a diagnosis might seriously limit their future prospects. In cases like this, the children might get places in mainstream schools, but then they won’t receive any extra support in the classroom.
When he couldn’t find an inclusive class for his child anywhere in Kaliningrad, Maksim Kuzko sent his son to a mainstream school. “The teachers do their best,” Maksim tells me, “but they have no experience of working with a child with autism. So far, we’re managing, and we’re very lucky that the school has a good psychologist.”
If a child is diagnosed with autism, it doesn’t mean that it will be easy for the parents to find a school that meets all their needs
According to Yulia, some parents, despairing of getting any help, go on courses in Applied Behaviour Analysis (ABA) therapy, an approach widely recognised as effective in treating autism. They then use it first on their own children and then on others.
The situation is no better in Moscow, says Yelena Zlatogurye, chair of Yablochko, an NGO working to integrate disabled people into society. Every child with additional support needs is assessed by a psychological-medical-learning panel which then recommends a school for them. Zlatogurye points out, however, that if a child is diagnosed with autism, it doesn’t mean that it will be easy for the parents to find a school that meets all their needs.
Although Russian schools receive additional funding for children with additional needs, not all of them will take them — it’s too much bother. Schools are legally obliged to make necessary adaptations: install ramps if a child uses a wheelchair, find an interpreter for a pupil with a hearing impairment or appoint a specialist teacher for a child with a learning disability.
A child rides a horse during a session with "Living Thread" hippotherapy organisation. (с) Alexander Utkin / RIA Novosti. All rights reserved. But some schools are not prepared to put all this in place and refuse to take children on the grounds that their needs are too complex, despite the fact that this is illegal, as Anna Zolotorevskaya, who works for the Children of the Rain Foundation (which helps autistic people find employment), points out to me.
Zolotorevskaya has personal experience here. A teacher at her autistic son’s college demanded that she withdraw him from his course. “His needs can be difficult,” Zolotorevskaya tells me, “but the previous head accepted him, he’s entitled to an adapted curriculum and he’s learning well. And then a teacher — not even the college head — told me I had got to take him elsewhere, because ‘this isn’t the place for children like that’. I wouldn’t have minded if he was struggling with the course, but he always got high marks! And he never skipped classes! I was in shock! And they kept talking about an individual approach to education, about a positive attitude to disabled people.
“I went to see the head, but she didn’t even apologise. We agreed that he should stay at the college, because he needs the opportunities to integrate that it offers. But the only reason I’m not making a fuss is that he likes it there.”
Inclusion today is “one sided and discredited”
In Moscow, Natalia Yevlanova faced a similar situation. Natalia’s son Anton spent nine years at School No 882 and was planning to continue his education there, but the school wouldn’t let him into the tenth year.
“They told me he wouldn’t be able keep up with the curriculum,” Yevlanova tells me. “He wanted to stay at the school, but he had to leave. And they didn’t want him at technical college either. He’s on the autistic spectrum, and he finds exams difficult, so he wanted to take the entrance exam first, before anyone else [in Russia, exams are normally oral rather than written – ed.] I told the management and asked them to accommodate him, but they said that if he couldn’t take his turn like everyone else, he’d better leave.”
A building on Tverskaya street is illuminated in blue as part of the Light It Up Blue event, dedicated to the World Day of Autism awareness. (c) Vitaliy Belousov/RIA. All rights reserved.Olga Donichenko, who heads the central psychological-medical-learning commission, estimates that 54 Moscow colleges are prepared to accept students with disabilities and additional needs. They work on the principle of inclusion: if someone has no learning difficulties, they study with everyone else. If they do have a learning disability, they study in a separate group but integrate with other students in the canteen and so on and at some joint sessions such as art or music.
Yelena Volkova, a department head at a technical college that caters for students with more serious impairments, considers this type of inclusion “one sided and discredited”.
Volkova tells me that in Russia they started talking about the need for inclusion in schools and colleges about 10 years ago, but that it is only recently that any real progress has been made: “Everything connected with inclusion happens very slowly. In the first place, it’s expensive; in the second, there’s the question of finding employment for these students afterwards. And now these problems are becoming more and more obvious.”
Employment for “different” people
Indeed, the problems of people on the autistic spectrum don’t end with education. Anton, Natalia Yevlanova’s son, received top marks in his computer programming course at college over a year ago, but still hasn’t found work. “We went for interviews, and trawled round all the recruitment fairs and job centres,” Natalia says. “Everywhere we were told, ‘what do you want? Here in Russia, normal people can’t find work, so what can you expect?’”
Anna Zolotorevskaya of the Children of the Rain Foundation knows the employment situation well: her organisation exists to find both jobs and temporary work placements for people with an autistic spectrum disorder (ASD).
“Here in Russia, normal people can’t find work, so what do you expect?”
“When people with disabilities come out of education, it’s hard for them to find work.” Anna tells me. “We work with people who have lost part of their cognitive abilities. We also take children from childrens’ homes who have been diagnosed as having learning disabilities, but in fact their education has just been neglected and they blossom as they work. If a young person is seriously impaired, they can work in our day centre workshops, making and decorating various ornaments and so on, or sewing. But you can count on one hand the places where they get paid for it — there’s no market for it. It’s all run by parent enthusiasts.”
Technical college teacher Yelena Volkova, who works with more seriously impaired students, agrees: “There’s no point in educating people if there’s no employment for them afterwards. For the moment, it all rests on the enthusiasm of people from various charities — not-for-profit projects and workshops, parents’ organisations and studios connected with the college. People come in to help all the time, volunteers, but it’s all very slow, because no one has any experience and there’s no system. We’re now talking about setting up a permanent structure, but in our country anything systematic takes a lot of time and effort to create. And it’s absolutely essential to set up a system to support employment for this category of people, as they have in other parts of Europe. We haven’t cracked that yet, but we keep hoping.”
Meanwhile, Anna Zolotorevskaya has set up her own printing studio, where she also employs disabled people, and she calls on other employers not to be afraid of doing this: “One of my best managers has a visual impairment. And I would rather take on young people with additional needs than migrant workers. But I know that often people with disabilities are refused work because the Labour Code allows them concessionary working conditions.”
People with disabilities are refused work because the Labour Code allows them concessionary working conditions
According to Yablochko’s chair Yelena Zlatogurye, after college young people with learning difficulties mostly get jobs in hypermarket chains, especially Auchan: “They don’t need to have any contact with other people, they just stack the shelves. Lads with learning difficulties go into agricultural work with Mosselkhoz. Practically all the colleges have contacts with companies where they try to find work for every young person, depending on their abilities. But people find work as long as everyone puts their mind to it, cooperates and the college has a direct agreement with the employers.”
Class in progress: students at a special general school for children with developmental delay in Chelyabinsk. (с) Alexander Kondratiuk / RIA Novosti. All rights reserved,People who can’t work independently are often those who don’t find work or any other employment. Zlatogurye complains that there has been a project lying around waiting for approval at the Moscow mayor’s office for a year now — this project would provide care workers to accompany young people like these. The public would like to see this happen, but nothing has happened so far.
According to figures from Moscow’s department of labour and social welfare, 6,919 disabled people visited job centres in search of work in 2016. Only five of them found jobs.
Help from outside the system
These difficulties faced by Russia’s young disabled people in accessing education and employment are symptomatic of a general problem: a lack of systematic assistance for them and their families.
As Yelena Zlatogurye tells me, “In Russia, everything to do with disability boils down to, “if you don’t ask, you won’t get”. If you need any service, you have to apply for it in writing — otherwise no one will lift a finger to help. At the moment we’re trying to get an early intervention service set up to provide a help package whenever a child is born with a disability. The family would need to be allocated a key worker, so that parents wouldn’t be left running around different offices, not really knowing where to go for what. Some people don’t even know the name of the department. But the government still doesn’t want to pay for it.”
According to people I spoke to, the result of this situation is that it is impossible to actually estimate how many disabled Russians receive an education, and how many don’t. No one knows how many people are in need, and no one can imagine the scale of the problem.
It is impossible to actually estimate how many disabled Russians get an education, and how many don’t
Zolotorevskaya believes that one important step would be to change public attitudes to disabled people, and their own attitudes to themselves: “The problem often lies in parents’ wrapping their children in cotton wool and not teaching them to be independent. A person’s integration in society and quality of life declines if after college they live their lives within four walls. And it becomes more difficult for them to find work and achieve their potential.”
For the moment, families of children with disabilities can’t expect a lot from the state. What help they receive comes from other parents who have been there and done that, seen their children through to adulthood, set up voluntary organisations and are now busy providing information and organisational support.
“Everything to do with help for disabled people works on a purely voluntary basis,” says Yelena Zlatogurye. “If a parent checks out the internet and finds an organisation, a community, then they can help their child. Twenty years ago, pre-internet, things were harder for us in that respect.”
The people I have spoken to admit, however, that the potential for and means of providing such help in Russia are pretty limited. As Sasha’’s mother Yulia says, if you don’t want to go on banging your head against a brick wall in Russia and you can move to another country, your best choices are Israel, the US and Poland — the education system for children with disabilities, including autism, in those countries is better organised than in Russia.
Translated from Russian by Liz Barnes
How are Russian civil society actors challenging taboos around autism? Read more here.