“Not a whim of the family, but a necessity”: in the Kaliningrad region, a disabled high school student with SMA is not allowed to take the exam

16-year-old Anton Ledovsky from the city of Pravdinsk, Kaliningrad region, is going to become a programmer.

The teenager has a serious disease - spinal muscular atrophy (SMA) - in which all muscles gradually fail, including those responsible for breathing.

But the guy's intellect is completely preserved.

Anton perfectly passed the final exams for the ninth grade (mathematics and Russian), he received the same mark for the control work in computer science.

To enter a university, he needs to pass the exam in specialized mathematics, Russian language, computer science and social science.

However, since one of the consequences of the disease is severe muscle weakness, it is difficult for a student to write by hand.

And if social science and computer science can be taken with the help of a computer, then mathematics is not.

“Printing an essay, passing computer science, Russian language - all this is possible on a computer.

But it doesn't work with math.

Because in the program in which Anton must take the exam, there are no necessary characters.

This is an ordinary notebook without symbols to make it easier to change, to draw something, ”explains the mother of a high school student, Olesya.

By law, children with disabilities have the right to an assistant when passing the exam, but the assistant can only transfer the answers from the draft to the form, but the student himself must write the decision in the draft.

According to Olesya Ledovskaya, she repeatedly appealed to officials with a request to allow an assistant, in the presence of a member of the commission, to enter answers into a draft under the dictation of her son, but she was refused.

“Communication with officials about the exam ended in June, then the last letter was received,” said the interlocutor of RT.

“It said that passing in the version that we proposed is impossible within the framework of the law and regulations, according to which the child must take the exam.”

"Studies everything on his own"

Anton approaches the exams responsibly, he studies on his own, without tutors.

According to the student's mother, his working day begins in the morning and ends at seven or eight in the evening.

Anton himself says that he gets tired of studying just like all high school students who are preparing to enter a university.

“I get tired, but only physically, like any person who gets tired from work and study.

And morally - only at the end of the year, when you already want to relax and forget what school is for at least two months, ”says the teenager.

In the new academic year, the workload increased due to the study of additional and mandatory subjects for admission to specialized universities, social studies and the Russian language.

The young man already has a university in mind.

If he manages to successfully pass the exams, he plans to apply to the leading Kaliningrad university, the Kant Baltic Federal University.

This year, Anton changed schools - the family moved from Pravdinsk to Kaliningrad.

Now he is homeschooled: he watches video lessons, reads textbooks, consults with teachers if necessary and asks them questions.

Final exams in the ninth grade (OGE) Anton passed in the same way as other children.

He wrote assignments in mathematics by hand, only the time of the exam for him as for a student with a disability was increased by an hour and a half - it lasted a total of 5 hours and 30 minutes.

• © Photo from personal archive

How to enter a university

If the Ministry of Education of the Kaliningrad Region still does not allow a child with SMA to dictate answers to an assistant in a mathematics exam, Anton will have to pass the exam in the same way as in the ninth grade - to write by hand.

There are 18 tasks in the final exam in specialized mathematics, and it will be very difficult for a high school student with muscle atrophy to meet the regulations.

Justifying their refusal to meet the family halfway and allow Anton to dictate the mother's answers, regional officials refer to the opportunity provided for persons with disabilities to take not the Unified State Examination, but the State Final Examination (GVE).

However, in this case, for admission, Anton will have to personally come to each selected university and pass entrance tests there as well.

For a family with a disabled child, such trips are a big problem.

The Ledovskys also hope that the leadership of the university, which Anton is aiming to enter, will allow him to study in a format that is suitable for a person with disabilities.

According to Olesya Ledovskaya, the Kant Baltic Federal University seems to be the best option among the Kaliningrad higher educational institutions.

“It is the most suitable, because it is located in Kaliningrad, and I can go to the university itself, organize a meeting with teachers not online,” the graduate’s mother explained.

- There is great hope for this.

Or that you can go to the first meeting, if necessary, and discuss everything with the teachers.

Personally, everything is easier to agree on.

But for now, we are still looking at other universities that have the possibility of distance learning.”

Right to education

Sofia Lagutinskaya, director of the Believe in a Miracle charity center, has known the Ledovsky family for a long time.

In an interview with RT, the woman expressed her hope that a gifted student would be given the opportunity to take exams in a format convenient for him so that he could get the education he dreamed of.

“We have known the Ledovsky family since 2017.

This is a wonderful, amazing family that over the years has invested in the education of all children, including Anton.

Very structurally suitable for education, - says Lagutinskaya.

- Anton has a completely intact intellect, he is very gifted, and it is felt that the need for admission is not just a whim of the family, but really a necessity.

And the child has the right to a full education.”

She stated that the Ledovskys were not the first family to encounter problems when a child with a disability took the exam.

According to Lagutinskaya, parents of schoolchildren who, for health reasons, cannot take the Unified State Exam in the same way as ordinary children, have not yet been able to change the situation.

“I don’t know a single family that would achieve this.

Moreover, we have similar cases in the Kaliningrad region, that is, this is not just one child.

With the help of Anton, we would like to bring this situation to the federal level, which would allow other teenagers and young adults to exercise their right to education,” emphasizes Lagutinskaya.

Irina Tkachenko, Commissioner for Children's Rights in the Kaliningrad Region, intends to help Anton and other students who are facing a similar problem.

She turned to the regional Ministry of Education on this issue, RT was told in the office of the children's ombudsman.