"Ordinary concentration camp." Stop_Pni - parents against neuropsychiatric boarding schools

By 2021, a new neuropsychiatric boarding school for 400 seats was supposed to appear in the Khabarovsk Territory. When this became known, in social networks the action of Stop_Pni with calls to stop the construction and create a house for an accompanied living for the same money instead of a boarding school. Now the authorities have promised to revise the project. But the parents of children with disabilities did not reassure these promises.

What will happen to our children when we are not? This is the difficult question that the parents of children with autistic spectrum disorders (RAS), severe multiple developmental disorders (TMNR). Today in Russia, such people sooner or later often one road - to a neuropsychiatric boarding school.

This life imprisonment - until the end of life, common panties and sanitary chairs at the beds

Natalya Evteeva is the mother of a special child with RAS, has been trying to build a system of assistance, training and employment for autists in the Khabarovsk Territory for 19 years. A few years ago, Natalia headed her non -profit organization “Real Assistance”.

“The question of working with“ children ”18+ we have the hardest,” says Natalya Evteeva , “registered with our resource center for children with RAS and TMNR - 600 children. They go to schools, kindergartens, at the age of 14 they have a hobby. They can do housework. And what is a stump? A person does not have a personal life - a bedside table and a bed for life. This life imprisonment - until the end of life, common panties and sanitary chairs at the beds. We believe: the more our children spend time in society, the better. But what will happen to our children later?

The flash mob Stop_Pni has been distributed in social networks since 2017. After the news about the construction of a female boarding school in the village of Nekrasovka, 30 kilometers from Khabarovsk, many social activists supported the flash mob, demanding to prevent the construction of an institution of this type. Parents of special children in Khabarovsk preceded to redirect 1.3 billion rubles allocated for the construction of PNI, to the construction of houses of accompanied residence of up to 50 people.

- The entire world community has long come to the belief that PNI could not replace the normal life of a person. In addition, we all know that many violations were discovered in Russian boarding schools. This is also sexual violence. In general, there has always been violence in closed institutions. We propose to develop technologies of the accompanying residence, ”says Natalya Evteeva. - This is a whole range of services, this is life at home, in the usual places where the children grew up and studied, went to kindergarten, this is employment. This is not just a place where you can sleep and eat, but a normal life, like each of you. And no one has the right to deprive our children. Now it turns out that as soon as parents die, the apartments are leased, and the child gets into a psychiatric hospital. And there he receives medicines that ruin the structure of the individual overnight - all that we, our parents, have invested in them for so long and meticulously.

In addition, the purchase and maintenance of small houses and apartments is 2.5-3 times cheaper than the construction of a boarding school, social activists say. The matured children with RAS can independently cook food, which means that expensive catering units do not need. They can independently serve themselves - do not need a state of auxiliary personnel. There is also no need for a regular physician - all services can be obtained by compulsory medical insurance. In addition, money is spent much more transparent and precisely on creating a more comfortable life.

At a recent meeting at the Ministry of Social Development of the Khabarovsk Territory, officials were entangled in the data on the number of boarding schools operating in the region. Mikhail Burlak, deputy minister of the department, counted seven such institutions. Irina Roshchina, head of the department for rehabilitation and social integration of people with disabilities of the same department, reported 16 boarding houses in the region. Some of them were clarified by the official, small.

“We need a new boarding school,” said Mikhail Burlak . - Because urgently you need to resettle a boarding school in the village of Gorin. Today this building is simply in a terrible state and does not meet any security measures. Remember how the boarding schools burned throughout the country? On holidays, I can’t sleep, I’m calling the fire department of the village and asking for the car there to stand right on the territory. This is the only wooden boarding house that we have not yet eliminated.

The female boarding school in the village of Gorin was built in 1953 and is located almost 500 kilometers from Khabarovsk. According to conflicting data from representatives of social protection, it contains either 200 or 350 women. It was planned to build a new neuropsychiatric boarding school one and a half kilometers from non -wrapping, just in order to relocate the wards of the Gorinsky boarding school.

- I myself was in the Gorino boarding school. And God forbid you imagine this: impressions for life, ”says Vladimir Sarzhevsky , the head of the regional society of the disabled. - And this is very far from the city. I know how difficult it is to the Khabarovsk Territory allocated money and how much we lost on some programs. So the accompanied accommodation is good, but I think, not today. Those women from the boarding school, in the forest, or something, quit? It is necessary to first organize human conditions to patients of boarding schools.

"Sing and dance"

- Only those who have serious behavioral and psychiatric deviations fall into PNI. This year, the Serbian Institute examined each tenant of the boarding school. In our Khabarovsk Territory, there were only two people who show the accompanied accommodation. And what was before is not at all what now. In all institutions there are curtains, bedspreads, shelves for storing things. Here, for example, is a sunny boarding house-yes everyone wants to get there! There, in every room, shower and toilet, a boarding school in Nikolaevsk-on-Amur was generally recognized as one of the best in the country. There are circles, boarding school customers master the professions and manage to earn extra money even in the open labor market. They sing and dance - the decoration at every city holiday. But in the photographs you can see that they have mental disorders, - Irina Roshchina optimistically reported on the work done.

The daughters of Tamara Striganova this year turned 30 years old. But she is still a "child", and disability will remain with her until the end of her life. According to Tamara, the construction of a new PNI is a big step back.

- We are all the heirs of the Soviet past, when we did not have disabled people. Therefore, the boarding schools were customary to "drive" away into the forest. It’s good that somewhere in the 2000s, disabled people began to notice. A little later it turned out that there are children with mental problems in the country. That's just in the Ministry of Social Protection, I know for sure that our children are still called "vegetables," says Tamara Striganova , - I recently found on the network a survey of the Gorinsky boarding school about the quality of services in this institution. Here's what they say: “I want to live in a separate room that should be closed with a key. I want to refuse the cleaning lady and clean the room myself, cook food myself. I want to be independent and not let the medical staff into my room, I want to go on excursions and to the circus to Khabarovsk and Komsomolsk-on-Amur.” This is how women who live there. So, they all once lived in families, they had their own house. And they remember that there is another life behind this fence. And what are we now seriously discussing the construction of another PNI? This is a system invented almost 70 years ago. We must talk about the future, and not return to the past!

Khabarovska Alla Topcheeva brings up a 12-year-old daughter with TMNR.

- I read the training manual of the St. Petersburg project of the accompanying residence. There are simultaneously people with schizophrenia, and stroller, and TMNR. And everything is fine with them. Why do they tell us that only two boarding customers in the Khabarovsk Territory can live according to the programs of an accompanying residence? And people from the Nikolaev boarding school - it is impossible that they cannot live in like St. Petersburg houses. They are here in the photo with axes, work at a construction site - and they are not shown? - Alla Topcheeva was perplexed. - My child does not speak, uses a stroller. But I know that she can not live in PNI. And here, in the "Nekrasov" project, my child is not even considered. And when the regulatory framework will develop and after a few years the stumps will be liquidated at all, what will you do with this Nekrasov institution? Fill it with our children?

A few years ago, Alexander Glushomedov, the guest of the Khabarovsk boarding house, wrote an appeal to the president: "Dear Vladimir Vladimirovich Putin! We, disabled, ask you to deal with officials." Alexander complained about the lack of drugs and the fact that patients were forced to work for free in the dining room and other hard work.

Alexander Glushomedov calls himself an artist. He would like to earn a living by selling his paintings, sometimes he succeeds, but he cannot leave the boarding school and start his own life: there is no money to rent housing. A few years ago, he "conquered" a separate room for himself in the boarding school, where he entered with his girlfriend - also a perpetrator of a boarding school. Soon they got married. After Alexander’s appeal, the prosecutor's office of the region and social protection conducted checks, but there were no violations. But measures were taken against Alexander. In his personal file, a certificate of incapacity appeared, and the boarding school began to issue custody of him. Given the new status, they wanted to recognize his marriage invalid.

“Then one lawyer helped me a lot - a friend of my old friend.” Now I am already restored again in the rights, the boarding school failed to divorce me with my wife. But we still live the same. Many are not paid salaries. As almost everything was taken from the pension, they take it - it happens that only 2-3 thousand are issued to me for my own needs. There are not enough drugs: you will go to the first -aid post - then one, then the other. They cook everything just as terrible. I cook in my room myself-together with my wife. But what is in the dining room is a nightmare. It’s some kind of “blue” potato that is generally impossible, then pasta, more like a cluster. How can they be done at all? Either the fruits are rotten, then the dirt there and the sam. In general, nothing has changed with us, ”says Alexander Glushomotov .

The cost of the new PNI in Khabarovsk was supposed to amount to almost 1.3 billion rubles. The design and survey work has already cost 20 million. The PNI construction contract was won by Kaptorstroy LLC, a company known in the Khabarovsk Territory, which constantly get state contracts for the construction of kindergartens, repair of military units, water supply and roads.

However, in November, the founder of the Vera charitable foundation Anna Federmeser and supported the parents of special children arrived in Khabarovsk.

-Parents of children with disabilities understand that the time will come when the child will need to be determined in a special institution, but they do not want their children to fall into boarding schools, which were built according to the Soviet type. My colleagues from the Prospect of Prospect of the Charitable organization from St. Petersburg visited Gorin and Elban ( local PNIs are located here.-SR ). We are ready to cooperate, to seek together a solution to the problem, to provide methodological support, ” says Anna Federmeser .

Her activities and a trip to the boarding schools of the Far East are supported by the ONF. Perhaps that is why during the visit by Federmeser Governor Sergei Furgal said that the PNI project in Khabarovsk would be revised.

- The last PNI in the country was built in 1968. Unfortunately, until the 90s, all medical care, which concerned neuropsychiatric patients, was supervised not by the Ministry of Health. In most cases, everything was built on the principle of punitive psychiatry. Therefore, we understand the mood of the parents now. Now we have made a difficult decision. A completely different type of institution will appear in Nekrasovka. It will be the so -called house of social support. There will be open rooms in which 2-3 people can be located, or even one at a time, taking into account both daytime and round -the -clock support. Most importantly, we need to change the attitude of the staff, to teach them all the current modern methods, ”said Sergey Furgal.

Parents of children with disabilities for these promises so far, however, are wary.

“I believe that the institution will be built according to the same project, but in the rooms, they may really settle 2 clients, and not 4, as planned earlier,” says Tamara Striganova. - And the name itself, it seems to me, does not change anything. The form of organizing life is changing the life of the disabled: we do everything that is possible (we go for groceries, cook food, we are engaged in feasible useful work). But how much it will be in the new "house" is incomprehensible. There are no specific changes. There is only a declaration. But let's hope that something will really change.

Until the end of 2024, the Russian government plans to spend 50 billion rubles on the construction of neuropsychiatric boarding schools throughout the country. In 2020 and 2021, it is planned to commission 15 PNI buildings in different regions in Russia, this is stated at the disposal of the Government of the Russian Federation (No. 94 of January 28, 2019). From 2019 to 2024, it is planned to allocate 50 billion rubles for the construction and repair of boarding schools. Further PNI content will also cost a considerable amount. This money could be spent on the adaptation of special children to normal life, social activists say.

Russian organizations of parents with disabilities and NPOs working with disabled people prepared an appeal to President Vladimir Putin-it was posted on the NGOs sites and collected 100 signatures from organizations. In the near future, the authors intend to send him to the administration of the President of the Russian Federation.

In their appeal to the President, the authors call “reservations for people with mental disabilities: most of these boarding schools are built in the country's country, that is, out of access to social infrastructure - to healthcare institutions, education, culture and leisure places”. So, out of 15 PNI, which it is planned to build in the next two years, 13 are located in rural areas. The authors indicate that the placement of citizens in PNI often occurs without their real consent and "leads to a forced breakdown of related and friendly ties." Neither social nor medical care is actually available in PNI, the right of citizens to protect life and health is violated in PNI, social activists believe, in particular to “qualified medical care”, experts and representatives of parental organizations say.