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Where do disabled children study?

10.07.2006    source: www.umoloda.kiev.ua
Faltering steps in Ukraine towards recognizing and meeting the needs of all members of sociiety

In Ukraine there are children who are not given the right to receive an education, since they have been diagnosed “unable to learn”. Yet psychologists and people working in corrective medicine will tell you that there is no such thing as a child entirely incapable of learning.

Parents of disabled children in our country are confronted with a difficult choice: to place their child in a children’s home, uprooted from his or her family, or to keep the child at home, providing him or her with love, but depriving the child of professional help.

Disabled people also have “a choice with no choice”: a reservation at home or a reservation in a specialized institution. There are virtually no schools in Ukraine where a child with special learning needs can study, so children and teenagers have hardly any contact with their healthy peers, and when they come of age, they may be employed fictitiously – so as to write off extra expense for a “disabled employee”.[1]  . 

On the periphery of life

During Soviet times, it wasn’t just sex that we didn’t “have here” [2]  The authorities concealed information about the fact that there were disabled people living in the country since there was no way that such people fitted into the standard of an “ideal society”.  Unfortunately to this day there remains a tendency to view disability as a sentence, to consider that since this is how somebody’s fate has panned out, that a person cannot hope for full development on purely medical grounds.  From here we have the apparently logical, but inhumane conclusion that there is no need to create conditions for the development of disabled people, for their active life in society, for their education. All that is needed, according to such a conclusion, is that they receive a pension (which given our country’s possibilities is pretty small), and medical help (and considering the fact that this sphere is successfully becoming commercial,  the help is relative). Beyond that disabled children are in the hands of their parents, the staff of special homes and the Pension Fund.

Meanwhile in developed countries disabled people have not only the right, but the opportunity to study in schools together with healthy children. This form of education is called “inclusive”. Public transport is adapted for people with limited mobility, while buildings are designed for wheelchair access to enable a person to get to chemists, bookshops, the cinema, etc.

Despite everything, I’m quite happy

Volodymyr Plysyuk, a former motor racing sportsman, had a serious accident several years ago. He miraculously survived, however since then has been confined to a wheelchair. “After what happened”, he recounts, “I didn’t want to go on living, I couldn’t see any hope for the future.”  Friends helped, getting him to run a firm. “I gained the sense that I was needed, began to do physical exercises, and now I’m quite happy”.  He now has a young wife, stood for office as State Deputy (although this time he didn’t manage to get the necessary number of votes), and travels in a car which has been adapted for hand control.  Mr Plysyuk works as an assistant to a State Deputy, and wants to persuade the Kyiv City Administration to create ramps for wheelchairs in the capital, at least for chemists, municipal and social services, shops, as well as proper ramps in the metro, because  on the ones that there are, without the assistance of somebody very strong, it’s very hard to go down and not hit people, or not overturn yourself. 

Volodymyr thinks that it is psychologically easier for people who were born with a disability than for those who were able to work, and then lost their health, since the latter have something to compare their situation with.
Mykola Svarnyk, the Head of the Coalition to protect the rights of disabled people and people with impaired intellectual development, has a child with special needs. He does not agree that a child who was born disabled finds it easier to cope with being different from other, healthy, people. Although he is convinced that such a child can and should be happy.  Society should help children become so, and it is time for our society to become more open for the Disabled.

It’s easier to put a disabled child in a home

As Raisa Kravchenko, Executive Director for the Coalition to protect the rights of disabled people and people with impaired intellectual development told us, if a disabled child is born into a family, the parents end up faced with the choice: to place the child in a home where, in theory, there is qualified medical assistance, or to keep the child at home and look after him or her themselves.   The child will be much better cared for, and will get a lot of attention. At the same time, he or she will be almost entirely deprived of qualified medical assistance since there are such educational and treatment institutions which one can approach as private individuals only in the biggest cities – Kyiv, Odessa, Lviv, Donetsk, etc.

According to statistics provided in their study by the International “Renaissance” Foundation, more than half of the disabled children in the country study in special educational institutions based on children’s homes.  Abroad 3-4 percent of children with the most several impairments study, while all others study in normal schools and live in families with their own parents.

Here a disabled child receives a pension of 251 UH[3].  For a child who is discovered to be HIV positive, the state allocates all of 34 UH a month. If a mother, looking after her child, has to stay at home (as is most often the case), than for the child and mother not otherwise working, 456 UH 30 kopecks are allocated. In addition, according to the statistics, fathers very often leave a family if a child has been born ill.  And then the mother and disabled child really end up scarcely able to survive.

In Raisa Kravchenko’s opinion, to prevent parents feeling forced to place their children in homes, the state needs to change the procedure for financing the care of disabled children on the principle that “money goes with the child”. The main people in charge of children’s pensions should be their parents. And the parents should have the choice as to whether their children study in specialized schools or in ordinary schools.

At present parents are still pushed towards placing the responsibility for looking after ill children in the state’s hands. Yet more evidence of this is provided by the fact that the local authorities allocate money for disabled children taking into consideration only the number of such children in the specialized institutions.

A Princess in her chair

How do children with special needs feel in an ordinary school?. As Mykola Svarnyk explained, the earlier such children come to a class, the easier the find it to adapt. In grades 1-3 the adaptation is fairly easier – children at that age are very curious and democratic, and they don’t have fixed stereotypes about how each person looks, what they can or can’t do.  “One child has glasses, others have freckles, somebody has funny pigtails”, Mykola Svarnyk says, “meaning that there is not any particular standard, and children will not react negatively to a classmate who is disabled”.

It’s just vital that the attitude of the teachers is equally tolerant and kind, since children at that age to some extent copy adults “I know a little girl, Marika, she’s just finished the first grade. The child is very heavy and if she falls from her chair, she can’t get up by herself, yet among the other children she feels like a little princess. I saw how she race after her little friend so that the friend would pull out the necessary books from her bag, since the lesson was about to start. The children are interested in her life, and they’re intrigued by her being able to ride around in a wheelchair.”

According to Mykola Svarnyk it’s much harder for 8-12-year-old children with disabilities to find their place in a new group. And it is very difficult for disabled teenagers to make friends with people who don’t have their difficulties. Healthy young people most often ignore and avoid such kids, and the latter retreat into themselves, lose their trust in people, and confidence in their own abilities.

Specialists say that if a child with special needs studies in a group with ordinary healthy children, this has a positive impact, both on the disabled children (their development is speeded up, and in the future they find it easier to feel like full members of society), and on the other children (they become more open and tolerant).

Take them out of the classroom?

In one Kyiv school the parents rose up in protest against a child who is HIV-infected studying with their children. “They basically presented an ultimatum to the Head, that if he didn’t take this child from the first grade, they would look for another school for their children”, Tetyana Bordunis, head of the law department of the “All-Ukrainian Network of people living with HIV/AIDS, explained.  “Unfortunately, our arguments that being diagnosed as infected is much less dangerous than not being diagnosed, as well as the arguments of the Head that he did not have the right to accept a child for the first grade because of a medical diagnosis did not convinced them. We were forced to find another school for the little girl”.

The survey carried out by the International “Renaissance” Foundation also confirms that the biggest opponents of integrated education of disabled children are not children, but adults, including teachers of general and specialized educational institutions.

The parents of children with special learning needs are frightened that their children will be laughed at. Parents, on the other hand, of “ordinary” children are worried that if there is a child with special needs in the class, the teacher will be forced to devote too much time to that child and will not give the appropriate level of knowledge to the class as a whole.

Teachers of general schools are also concerned about the new responsibilities they will have. They point out indignantly that they already get a pretty small salary with a big workload. Furthermore, the teachers do not have sufficient knowledge about the nature of the illnesses of the children potentially in their care and do not know how to help them in an emergency, for example if a student has an epileptic fit. They have no idea how to teach children with special learning needs, and therefore consider it better that children with more severe difficulties study in special homes, and spend time with “ordinary” children outside school time.  Teachers and staff of children’s homes also prefer to not see any change in the system – they’re worried about losing their jobs, and don’t want competition.

Nor do the heads of schools and pre-school centres show any enthusiasm for adapting their institutions to meet the needs of disabled children.  In Europe, an educational institution is allocated additional state funding if there is even one child with special needs. The head of the lyceum “Harmony” Olena Chynok received extra funding for the education of a talented young disabled girl from … a US humanitarian foundation. A delegation from America praised the lyceum and gave a grant to equip the school.

If a child can’t cope with the school curriculum, then …

As the Director of the All-Ukrainian Fund “Step by step”, Natalya Sofiy, explains, if children with special needs are going to study in our general schools, then new methods of teaching must be developed, and the school curriculum must become more democratic and adapted to the individual capabilities of each child.  This means that for one child “excellent” is when in the second grade s/he knows the entire times table, while for another child, this may be when at the same age s/he can count to twenty, one child may have handwriting which is like calligraphy, while another can have problems for motor skills and control.

At the moment in Ukraine educational programs are directed at achieving specific results and a child is moved to the next class only when s/he has covered the curriculum for the previous level. If a student doesn’t cope with the curriculum, she or he is kept back for a year, repeating the same grade. According to Natalya Sofiy, legislation does not stipulate how many years a child can be kept in the same grade, however in practice if a child can still not cope with the curriculum after one repeated grade, the parents are asked to place the child in a specialized school or to move to an individual timetable of studies. Among those who can’t keep up with the program may be children with limited physical opportunities or with learning difficulties, or children from disadvantaged families, or the children of refugees.

Children’s homes: the customary horrors

Many such children end up in children’s homes. What awaits them there?  A group of activists from the NGO “Youth Alternative” from Chernihiv carried out monitoring of children’s home-type institutions in five regions. As Vlada But, a member of “Youth Alternative” recounts, they were not always welcomed. And in Simferopol they were simply not let into the children’s home, with the reason given being that the presence of strangers would interfere with the education and recreation of the children. “I was staggered by the difference in the responses of the children who were in the children’s home, and those who had finished these institutions”, Vlada But comments. According to Vlada, the children only dared talk about the problems associated with the Internet after they were clear of it.  It then transpires that the children are cared for most often by old ladies, and not qualified staff, that the children are screamed at, even beaten, and tyrannized into going to sleep. Children very rarely receive help from a psychologist which they desperately need. Instead there are often scenes with those inclined to protest, and those whom the staff don’t like get sent to a psychiatrist. This is why a large number of children in such institutions are regular patients of psychiatric hospitals. It happens also that younger children are raped by older kids.

However Vlada But does not blame only the staff of these children’s homes or specialized schools for such horrors. “Some really difficult children end up in these children’s homes, and the pay and conditions that the staff work under are, to put it mildly, inadequate”. Members of “Youth Alternative” surveyed mainly children from disadvantaged families and those who have had run-ins with the law (these also being classified as children with special educational needs), and not disabled children. According to Vlada, it was the former who were at least ready to make contact, whereas children from the homes either had very serious impairments in mental development, or were frightened of new faces, and it was very difficult to talk with them. In general, children from homes are much less open than children living in normal families with their parents.  The lack of openness and willingness to communicate of children from homes is exacerbated by the fact that their institutions are most often far away from populated areas.

Schools with an inclusive system

In Kyiv there are several schools and kindergartens for children with disabilities. One of these is the School-Kindergarten “Parostok” [“Seedling”] which has been running since 2001. As the Head of the school. Valentina Stryzheus, reports, the children who come to them have cerebral palsy, impairments in mental development, autism, sight or hearing impairment. The children do not spend the whole day at school, with some coming for an hour, others for half a day. “The healthy children are wonderful with them, they’re friendly, they look after them, the Head of “Parostok” recounts – we have one child, Sasha, who almost didn’t speak when he came to us, and now he communicates with us, tells us about himself and so needs love. Yanchik, who has cerebral palsy, has amazing artistic talent, and is a very gifted child. It’s incredibly interesting working with such children, but very difficult also”.  The Head explains that when their school – kindergarten was only beginning to bring in integrated learning, there were four other such school-kindergartens of an open type in Kyiv.  Now only two remain. Valentina Stryzheus believes the reason for this reduction is the fact that neither the state nor the local authorities support these educational institutions. Nor do the staff working with ill children receive any extra pay. They can only register the hours that they spend on rehabilitational learning as “individual lessons”. Not all schools take such children”, Ms Stryzheus notes, “the children who finish our school (and we only work with children up to the fourth grade” are taken by Kyiv School №262, but only those who can work according to the school curriculum.”

International experience has shown that schools adapted not only for “normal” children, but also for those with special needs, are different.  It is advisable that there are no more than three children with special learning needs for a class size of 20 – 25 children.  Teachers should be assigned assistants who can at any time help a child with special needs. Those children who come to “Parostok” cannot attend all lessons. For example, instead of physical education lessons, or maths, they can visit the speech therapist, the swimming pool, or go to gymnastic therapy.  There should also be periodic visits from specialists, possibly from rehabilitation centres, who can observe the state of health of children with special learning needs. 

The school needs to be suitably equipped – with ramps, separate toilets with wheelchair access, and equipped to enable children to lift themselves from their wheelchairs, and lifts.

Children with motor coordination impairments are quite capable of learning how to use computers. There are already centres which provide distance learning for disabled people and even help their graduates find work.

The idea of children with disabilities studying in ordinary schools is only beginning to be discussed in our society. There are many obstacles to introducing inclusive education. According to the statistics, unfortunately, the number of children disabled from birth is tending to rise. People often make a move towards others only when something bad happens to them. This is confirmed also by the problems of children with special needs: it is mainly those who have been personally affected who are concerned.

We are endeavouring to build a democratic society and this implies equal opportunities for all, as well as understanding, tolerance and the desire to do something for others. It is for these reasons that inclusive education is a noble undertaking, where our future must lie.

Incidentally

In Ukraine in 2004 there were 135,773 children registered as having special needs, this being 1.8 percent of the overall number of children in Ukraine.

See also: “Human rights in Ukraine – 2005” http://khpg.org/1150732848=



[1] Ukrainian legislation stipulates that any place employing more than 8 members of staff must employ people with disability status.  See “Human Rights in Ukraine – 2005”: for more details: http://khpg.org/1150732848=  (translator’s note)

[2] This is referring to a television program “uniting” Soviet and US young participants.  One of the participants became so enthusiastic about denying all the ills that she felt were being attributed to the USSR, that when someone mentioned sex, she said that “we don’t have sex here”.  (translator’s note)

[3]  This figure here is per month. At present, and throughout 2005, there were around 505 UH (hryvnya) to one US dollar. (translator’s note)

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