Health as a percentage: residents of Moscow announced the mass deprivation of children with disabilities

The Metropolitan Directorate of the Investigative Committee checks the fact of information in the media, which cited data on the deprivation of the status of children with disabilities. It turned out that the Bureau of Medical and Social Expertise (ITU), which holds a commission on awarding disability, in some cases makes children refuse.

The basis was the order of the Ministry of Labor No. 1024n “On classifications and criteria used in the implementation of ITU citizens by federal state institutions of ITU”.

According to the document, disability is awarded to a patient not on the basis of a specific diagnosis, but on violations of certain health functions, which are determined in percentage terms. Disabled status is assigned for health disorders of 40%.

Parents contacted RT whose sick children were disabled. They talked about how they are now forced to independently buy medicines and pay for rehabilitation, which were previously provided free of charge. In their opinion, the reason for the mass removal of disability lies in incorrect criteria - they are convinced that the status should be awarded by diagnosis.

"My son was nobody needs"

Muscovite Bella Isaev alone brings up his 12-year-old son Ivan (name changed . - RT ). The boy suffers from severe progressive bronchial asthma and epilepsy. Disability was given to the child in 2012.

“After the commission on recognizing the child as disabled, he is assigned an individual rehabilitation program. But this was not a trip to a sanatorium, but simply gave some kind of treatment. And it depended on the budget of the district in each month, ”RT Isaeva said. “We were either given a corset for the back, or diapers, which are necessary, because the child suffers from enuresis due to the use of drugs, they did not give anything, citing the fact that there is no money.”

After another failure in the necessary diapers, Isaev, trying to solve the problem on his own, began to use fabric ones. However, her washing machine soon broke down and in October 2017 a woman complained about the hot line of the Public Chamber of the Russian Federation, which was opened specifically on ITU issues. After that, the woman was summoned to the ITU Federal Bureau.

“They said that my son’s disability with a diagnosis of asthma, that is, the diapers that they periodically gave me, are not supposed to be for me. And one of the employees of the bureau told me at all that for the fact that I complained to the Public Chamber, disability can be removed from my son at all, ”Isaeva recalls.

In April 2018, Ivan's condition worsened (RT has the medical documents), but the doctors of the ITU regional bureau decided that the boy is healthy and does not need disability. According to Isaeva, the district bureau said that the order for depriving the child of a disability was sent from the federal bureau.

The woman challenged this decision nine times, however, the doctors stood their ground - health damage is 20%, so the status is not set. Bella does not work and all the time she tries to devote to her son. After the removal of the status of a disabled person, they were deprived not only of drugs and rehabilitation, but also of benefits. In the summer of this year, a woman paid 130 thousand rubles for the necessary spa treatment for her son.

According to Isaeva, she threw all her strength into regaining her lost status with her son, as a result of which she herself began to have health problems.

“I have a mom with oncology and a disabled son. I was the only healthy link between them and took care of them. However, amid stress, I developed diabetes. It all started in the spring of 2018, just when my son was denied disability at the federal bureau, says RT Isaeva. - Then my sugar rose sharply, I fell into a coma and spent a month in intensive care. Therefore, I missed all the deadlines for appealing the decision of the ITU Commission. Now I have been keeping sugar for over 1.5 years above 35 mmol / liter of blood (the normal sugar level is 3.5 - 5.5 mmol / L - RT). Doctors said that I will not live more than a year. But I want to live, I want to help my son. She and mom can’t do without me! ”

Isaeva says that earlier all her free time was devoted to the development of her son's talents. In April 2017, her son became a laureate of the 10th festival of applied art of young people with disabilities "We are together." To be awarded, they were invited to UNESCO headquarters in Paris, where an exhibition of Ivan's works was held.

“UNESCO Director-General Irina Bokova from the rostrum expressed gratitude to Russia for supporting such talented children, and to me for raising a gifted child. And now my son turned out to be of no use to anyone: having deprived of a disability, they left him to the mercy of fate, ”Isaeva says. - In Moscow, there is a program to support talented children from low-income families through which they are entitled to a trip to Slovenia. After the deprivation of disability, we sent an application for participation, and we were refused by the fact that the child is sick. It turns out that his illness is enough to refuse a trip, but not to award a status of a disabled person. ”

Relocation for children's health

Evgenia Dmitrieva moved with her family to Moscow from Izhevsk in 2010. As she told RT, she had to change her place of residence due to the health of her daughter Olya (name changed), who was undergoing treatment in Moscow clinics.

Until 2011, Olya was treated in hospitals and underwent multiple examinations. Doctors advised Eugene to submit documents to the ITU bureau. In August, the girl was granted disability status. However, in April 2018, after Olya came of age, ITU staff decided that there was no reason to extend disability.

“They only explained that after 18 years the order of assigning disability changes and for this there should be a strong restriction of life. But my daughter has a serious genetic disease that arose against a background of viral infections and impaired immunity. After adulthood, she was not cured, ”says Dmitrieva. - Now doctors are afraid that due to the fact that we are no longer given many medications, the daughter's condition may worsen. The cardiologist has already advised taking one of the drugs on an ongoing basis. Now she walks in orthopedic insoles to reduce flattening of the foot, and visits a psychologist. ”

According to the woman, the daughter has not received spa treatment for three years. The fact is that Oli's turn came in 2018, when disability was already lifted. And in this case, she could not go for treatment.

Now the family is trying to provide the daughter with all the necessary medicines, which for disability were given free of charge. Treatment in the sanatorium Dmitriev can not afford.

"Studying well - why disability?"

Muscovite Tatyana Malakhova alone brings up her 12-year-old daughter Lena (name changed). The girl’s health problems started from birth. Then the child was given disability.

“We have kidney problems - without proper treatment, they may even fail. The daughter’s joints are constantly being destroyed, ”says Malakhova. - However, in May this year, the ITU Bureau withdrew her disability status. They said that the daughter is a good student, which means she is ready for life. In this case, she does not need disability. Moreover, in May of each year, her daughter exacerbated and worsened tests. But they did not even look at extracts from the medical record - they wrote a 20% health loss and that’s it. But doctors at their discretion calculate interest. ”

Malakhova tried to challenge the decision in a higher bureau, but the decision was upheld. Now a woman is forced to buy expensive medications necessary for her daughter with her own money.

“In addition to drugs, cardiac as well as joints are required for kidney maintenance. She already has a screw and implants at her feet. The other day, doctors performed an operation, ”says Malakhova. - I hope that we will be able to achieve the provision of specialized rehabilitation in order to recover. Because with my money I can’t pay 21 days in a sanatorium. ”

Malakhov, Dmitriev, and Isaev are far from the only ones whose children were deprived of their disability. They are in a group where more than 30 parents are trying to achieve the return of this status to their child. Women told RT that in this group they share the contacts of doctors, worry, support each other, and most importantly, they try to draw public attention to the situation.

“From January 1, 2020, the order of the Ministry of Labor No. 585n comes into force. According to it, it is proposed for children with cerebral palsy to also introduce the system as a percentage, and not by stage. That is, he will be able to take a spoon in his hands or take a step and that's it - adapted to normal life. And they need so much rehabilitation and care. This cannot be allowed, ”the women summed up in a conversation with RT.

While parents hope for the best, investigators are checking their stories to establish all the circumstances of what happened. The UK notes that a procedural decision will be made based on the results of the audit.