Parent of a child with autism: They make fun of our children at school, the government thinks inclusion is done, let them take my citizenship to make it easier for me to leave here

autism center
Parents of children with physical, intellectual or other disabilities in the country live very hard and are resigned by the authorities, Photo: Archive

December 200 is International Day of Persons with Disabilities. In Northern Macedonia it is estimated that XNUMX thousand inhabitants are people with disabilities. Although persons with disabilities are entitled to all the rights guaranteed by the universal documents adopted under the auspices of the UN, they still face a number of obstacles in their realization, prejudice, marginalization and discrimination.

Parents of children with physical, intellectual or other disabilities in the country live very hard and are resigned by the authorities. Zoran Mijalkov from Stip, father of two children with autism, says he is so disappointed that it would be best for the authorities to revoke his citizenship to make it easier for him to leave Macedonia, as he says in a "normal state" where his children will not be constantly punished, marginalized and invisible.

- It is best for us to have our citizenship revoked. To become stateless, to be able to get asylum more easily in a normal country where there is a future for our children. There is no more discriminated category of citizens. In the new budget, the government has earmarked 12m euros for NGOs. With that money they could, if they wanted, completely solve the problem of people with disabilities, build rehabilitation centers, train people who will work with children with autism. Thus, there is no early detection, no therapies, no professionals to prescribe those therapies, no inclusion in schools, your child sits in isolation. Maybe, if an assistant with a human feeling hits you, you will be lucky. "Our children with autism need rehabilitation centers where they will be able to live, to acquire basic hygiene habits, to be able to work as much as possible, because one day we, their parents will not be gone," Mijalkov told Sloboden Pecat.

As president of the association "Fused Hearts", which has three thousand families from all categories of disability, he advocates the establishment of rehabilitation centers that will create conditions for independence and job training for people with disabilities. However, the idea of ​​a rehabilitation center was not only not supported by the authorities, but these efforts were hampered.

- In normal countries, every child has a school assistant and a home assistant. And here the parent is a nutritionist, and a doctor, and a teacher, and now the latest thing is that we have become smugglers, because there are therapies that can not be prescribed here, so they must be obtained illegally, especially for rare diseases. In other European countries, the way these people are treated is science fiction compared to ours. Early detection and therapy are key, because if the child is calm with therapy, it can be worked with. At school, our children are the target of ridicule from their classmates, and the authorities think they have made inclusion. Assistants are missing. If you go to the countryside you will realize that the state should be abolished. Let the politicians come to the families, to see with their own eyes what I have seen, in the village, a child in a wheelchair with cerebral palsy to have worm wounds, to feel the smell, to see what it is like when a child with autism has an attack and is self-harming. But they know nothing about us, and they do not perceive us as enemies when we point out weaknesses. In families with a child with a disability, every third marriage breaks up, because one of the parents who is otherwise able to work has to stay at home, living on one salary, adds Mijalkov.

He says that there is no hearing and understanding among employers that the parent of a child with special needs must be more influential and have flexible working hours. Mijalkov wrote off his child from the day care center in Stip, because, as he says, the child came home beaten three times.

- I do not know if the children among themselves or someone else did it. My child no longer goes to the day care center. They are kept there from 8 am to 13 pm anyway, which does not help at all, because no working time of the parents is so short. Even if you want to, you can not work, when the duration of the stay is so short. It happened to me that they left my child on the street, they forgot to call to pick it up. Then with the police we found him near Bregalnica. We wanted to build a rehabilitation center with my association in Stip. They did not give it to us. The land with various procedural obstacles and lack of permission, they took it and gave it to a boss, so we are waiting for him to build a building, says Mijalkov.

Suaret Alishan, who is 99 percent blind, for "Free Press" describes his everyday life which is difficult. He says that he does not want pity or anything that does not belong to him, but only to respect the laws and to provide dignity and visibility to people with various disabilities in Macedonian society.

- Imagine what it would be like to have to spend every day at a traffic light with your eyes closed. Well, that's the case with us, the people with blindness, because the traffic lights have no sound system. How do I cross the street? I'm waiting for someone to come and pick me up. It is time to talk about the presence of people with disabilities in society, and the local government to provide access paths. The speech machine in JSP is not working. Mapping should be done in the country, how many people are physically disabled, how many with transverse vision and policies should be made in accordance with that demographic map. When the Health Fund will put on its white sticks for the blind that fall into the category of therapeutic aid, Alishan asks.

He adds that it is not all about the money, but the bigger problem is that people with disabilities are locked up at home, and up to 26 years old are considered minors only not to receive cash allowance as an adult, but as a child, ie to take what less money from the state. Alishan points out that many of the public toilets are not adapted for the disabled, there are bicycles dangerous for the blind on the movement paths.

- We also ask for sugar meters for people with disabilities and the state should not consider us minors up to 26 years, but 18 like other people. We are now treated by law as minors up to 26 years old, but when we have to vote, they do not mind that we vote at 18 years old. They only care that after 26 years the monetary allowance they give us is 11 thousand denars higher. That is why they do not lower our age limit. So for the state we are adults for voting, and minors for exercising our social rights, he is decisive.

The President of the Association for Children with Growth Disorder "Growth", Aleksandar Petrovski on the International Day of Persons with Disabilities says that in the country they are discriminated against, inclusion is non-existent, infrastructure is weak, and we should work on raising the awareness of all people who should enter "in someone else's boots" and have understanding . According to him, in the local councils there should be at least one parent of a child with special needs to help the work of the council and the municipality and to do all the work according to the detected need in each municipality.

- I think that in every municipality there should be at least two schools with elevators. Cabinets and toilets are not on the same floor, that's a big problem. There are also children in wheelchairs and with permanent disabilities, how can they learn when there is no elevator? Not to mention the sidewalks that are a disaster. It is necessary to work on raising awareness and everyone to understand that these people have an advantage. Private sector employers have very little understanding of the parents of children with disabilities. There are no benefits. It is crucial to have reception centers in the municipalities for people with special needs, with physical and intellectual disability. Shipping also needs to be settled, do not have all the money for a car or taxi. It is very important to start from the basic needs, Petrovski explains for Sloboden Pecat.

December 15 is International Day of Persons with Disabilities. According to the WHO, more than one billion people worldwide live with some form of disability, which is 200 percent of the world's population. According to information published by the Institute of Public Health, disability is more common among women, the elderly, children and adults who are poor. These people can hardly provide adequate health care on their own and that is why every country needs to fully help them. In Northern Macedonia it is estimated that XNUMX thousand inhabitants are people with disabilities. Although persons with disabilities are entitled to all the rights guaranteed by the universal documents adopted under the auspices of the UN, they still face a number of obstacles in their realization, prejudice, marginalization and discrimination.

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