"It's only possible here.": how do people from stumps find a home
Many residents of neuropsychiatric boarding schools enter this system from birth. Even if the disease is not so serious, after decades spent in boarding school, they often lack even the most basic household skills: they do not know how to cook, do not know how to handle money or run a household. Apartments for accompanied living are designed to help such people learn how to take care of themselves. Several such apartments were organized in the southwest of the capital by the Krug Creative Association Foundation. Izvestia went there to see how such a life could be organized and to listen to the stories of the residents of one of these apartments.
"Works and lives among people"
You enter the usual entrance of a residential high—rise building on Leninsky Prospekt, take the elevator up, and walk straight out of it into a large communal apartment at its best. There are traces of domestic life everywhere —outerwear on hangers, drawings and posters on the walls. The voices of the inhabitants can be heard from the rooms, and from the kitchen — the aroma of compote and the clatter of a knife.
Yana is in charge of the kitchen, a short, burly woman in a headscarf, with a businesslike and kind face. The cook has a lot of work — only eight people live on this floor, mostly former residents of the village. Most of them go to work in the workshops of the Krug Creative Association (or simply TOK) during the day, but they all have breakfast and dinner together in the large kitchen.
This accompanied apartment is also a project of the Krug Creative Association charitable Foundation. It is intended for people with disabilities who need to prepare for an independent life, for example, after a long stay in a boarding school or the death of a loved one who cared for a person. Here you can not only get basic household skills, which most of us have since childhood, but also improve our school curriculum and even get a job.
The Foundation has been in existence since 2014. It started with inclusive ceramic workshops for deafblind people. Later, people with other disabilities began to be accepted into workshops: there they could learn a profession suitable for them, receive a salary, but most importantly, be able to communicate and feel needed. Over time, the issue of accommodation for some of the workshop workers arose. This is how escorted apartments appeared. In total, the TOK Foundation currently has three workshops in the south-west of Moscow and in Tushino, and eight apartments for escorted living.
"We are creating a system where people with disabilities do not live in isolation, but work and live among people," says Marina Men, director of the foundation. — According to our strategic plan, in the future we want to organize family-type mini-social houses, and this apartment is a pilot of such a house.
Those who cannot live independently, even though they have their own living space, will be able to stay in a social home in a family atmosphere, but with the opportunity to receive qualified help.
Like, for example, Anya, a frail girl in a wheelchair. Anya was very lucky: despite a serious illness, she retained full legal capacity and never lived in a government environment. Since childhood, she lived with her mother, and when she died, she decided to live on her own. She found a neighbor to make it easier to cope with everyday life, but the experience failed: Anya became pregnant, which came as a complete surprise to her. Fortunately, everything was resolved safely — the child was born healthy and immediately joined the family of Anna's mother's friends, and she now lives with other residents of the accompanied apartment and learns to help Yana in the kitchen.
Yana
Cook Yana is just one of those residents of accompanied apartments who are preparing to go sailing on their own. She now lives in another similar apartment located one floor below. And before that, she spent more than 40 years in boarding schools, and it's hard to imagine that this businesslike and confident woman was considered incompetent for most of her life.
— I've spent my whole life in boarding schools. As a child, I lived in a boarding school on Akademika Pavlova Street, where my mother regularly visited me. Then I turned 13, and I was transferred to Moscow, to adults," says Yana. — I hardly worked at the boarding school — there was a moment when we were making spoons and forks, but during the coronavirus pandemic it all ended. And I really wanted some kind of normal, real job.
One day, in line at the canteen, Yana overheard a conversation between two guys, one of whom was talking about the TOK foundation — he was saying that he would be discharged soon and he would move into an apartment. She decided to follow his story, and when she heard that he had indeed left the boarding school, she went to the head doctor herself.
— I say: Lyudmila Nikolaevna, Sasha was taken away, but he is also incapacitated. Can I go there too? And she said to me: okay, okay, I'm Marina (Men, director of the foundation. — Izvestia) I'll call and ask," recalls Yana.
The negotiations were apparently successful, because soon the staff of the boarding school came to Yana and asked her if she would be ready to leave the boarding school if the foundation took custody of her. Yana replied "yes" — that's how she got to the escorted apartment.
Here she changed several jobs: she was assigned to various tasks, from helping in ceramic workshops to working as a janitor. And then the cook took her into the kitchen and began to teach her everything he knows himself. This is where Yana stayed — her teacher left, and she became a full-fledged hostess in the kitchen and now, on the contrary, teaches the others.
Mastering a profession is an important part of living in escorted apartments. The tasks here can be different, depending on a person's inclinations and capabilities. Someone, for example, the sociable young man Sasha with spina bifida, a severe congenital disease affecting the spine, works right in the apartment. There is a studio for the production of handmade postcards. Someone goes to ceramic workshops, and someone even chooses the profession of a courier, like, for example, Alexey.
Alexey
Alexey is confined to a wheelchair with a severe form of cerebral palsy, but this does not prevent him from looking cocky. He's a real star in this apartment. A man who finds it difficult to even speak has managed to write a book, maintains popular accounts on social networks and works as a courier.
Despite all his energy, he, alas, cannot move around without a wheelchair. And Alexey's parents live in a five-story building without an elevator, on the top floor. Therefore, he ended up in a boarding school quite early, where, in theory, he should have been provided with decent care. But it quickly became clear that Alexey needed not only care, but also freedom. So he didn't like boarding school. "A small room, an isolated space," he lists sadly.
In 2011, Alexey came to Finland. There he met a politician who had the same medical condition as him. Despite this, he led an active public life and managed to change the environment for people with disabilities in his country in many ways. Alexey seemed to be most impressed by the fact that his new friend had five different wheelchairs at once for various purposes.
— And I thought, — says Alexey. — Is it really impossible to do this in Russia?
After returning to Moscow, Alexey began actively talking and writing about the rights of people with disabilities — it was then that Marina Men noticed him and invited him to TALK.
During the conversation, Alexey, worried, drives up and then backs up in his wheelchair, controlled by a joystick. Actually, for medical reasons, it is believed that his physical abilities do not allow him to drive a wheelchair. But the reality with these indications is at odds: Alexey, who is clearly close to the spirit of the researcher, mastered a rather unexpected job for a person with his disease. He became a courier and constantly moves around the city in his wheelchair — even the heavy Moscow snowfalls were no exception, during which many motorists did not venture out of the house.
"You can't keep him at home," laughs Polina Orlova. Officially, her position here is called "hostess." She is responsible for helping the wards and maintaining comfort. — He rides his wheelchair all over Leninsky. When there were heavy snowdrifts, they sometimes called us from below, saying that your car was stuck in a snowdrift, go help. But even that didn't stop him.
Of course, all this is not easy for Alexey. But it was his courage and categorical unwillingness to accept the limitations that helped to get a lucky ticket for his friends at the boarding school.
— When I first started leaving the boarding school for the street, I stalled at the crossing. A man came up to me, helped me, and said, "This stroller doesn't suit you, let me buy you another one," Alexey recalls.
Alexey told the philanthropist about other residents of the boarding school. And a week later, a passerby returned and bought modern strollers, the cost of each of which exceeds 100 thousand rubles, for him and five other residents. And when Alexey met Anya in the apartment, his sponsor bought an electric wheelchair for her.
The courage and excitement that makes Alexey take to the streets of the city every day helps him discover the best in people, Polina Orlova believes.
"How many times have we had people helping him on the streets, putting him on a bus," she says.
All of this would have been impossible if Alexey had stayed at the boarding school.
"Step into the unknown"
Perhaps not the primary, but certainly an important advantage of living in an apartment is the opportunity to master basic financial literacy and, in principle, have free money, both the residents of the apartment and the staff of the foundation say.
— In boarding school, according to the law, I received 25% of my pension (75% of pensions in such institutions are withheld as payment for social services. — Izvestia), and here I get all of it, and also my salary as a courier, — Alexey explains.
Some people use this money, among other things, to support their friends from boarding schools. Those who have spent their entire lives in such institutions have their closest friends staying there. Cook Yana, for example, goes to her stumps every weekend — she has a good friend and a friend there.
"I get paid, I buy them something delicious to eat, and I bring them," Yana says.
Her friend also wanted to leave the boarding school, but it didn't work out: the doctor wouldn't let her go. In general, leaving the boarding school is preceded by a rather complicated procedure.
— People undergo special testing, they are prescribed an IPPSU (individual plan for the provision of social services), on the basis of which they can come to us for social support by terminating the social service agreement with the boarding school, — says Marina Men.
But even if the institution gives the green light, not everyone decides to take this step in principle.
"Actually, all the guys you see here are heroes,— explains Polina Orlova. — Because for those who have lived all their lives in a boarding school, where everything was decided and organized without your participation, it is very difficult to decide to leave it.
Someone might just disagree, Yana confirms.
"It's a terrible step into the unknown that needs to be taken," she says.
Yana herself, however, succeeded in this step. She mastered the profession and, together with the foundation's staff, achieved partial legal capacity. A trial awaits her in mid-March, followed by a commission where the woman will fight for full legal capacity.
— After that, we will be talking about getting our own apartment. Because the foundation believes that I should live alone," says Yana, and from the way her hands are clasped in her lap, you can see how frightening this last, decisive step seems to her.
Masha
Of course, most of those who left the boarding school are in escorted apartments. But the residents are not limited to them. For example, Mikhail sometimes stays in the back room — he is not here all the time, but he comes often, so many of our interlocutors are proud to call him their friend. Mikhail is a member of the Russian Paralympic national team, winner of the world and European championships in boccia, a popular sport for wheelchair users. Actually, Mikhail lives in St. Petersburg, but he stays in the apartment when he needs to be in Moscow for training camps.
Two more residents of the apartment are twin sisters who have lived at home all their lives. They came here hoping to learn how to take care of themselves on their own. Masha is a serious girl in a wheelchair. She has cerebral palsy and has lived at home with her mother, grandmother, older sisters and twin sister for all 20 years of her life. Masha was home-schooled until the sixth grade, and from the age of 14 she went to a five-day school, where, according to her, she adapted hard. And then my grandmother died, and then my mother, in front of them and my sister.
Now the girls are being raised by their father and their father's new wife, and their older sisters no longer live with them, but they also help whenever possible. However, the girls were determined to learn how to live independently, so as not to depend on anyone.
— It was my initiative, I really wanted to get here in order to learn how to serve myself and not depend on outside help. I had never been in such training projects before, and of course it was hard to get used to such an environment," Masha admits.
She lives in the apartment with her twin sister Sasha. Sasha also has cerebral palsy, but the disease manifests itself in a slightly different way: Sasha can walk on her own, but she has very poor eyesight, 10-15% of the vision of an ordinary person.
Masha does not plan to stop there — she says that she dreams of joining the Moscow House of Amazing People project, a socio-cultural space for people with disabilities.
— In addition to learning self-care, I would like to try myself as a blogger, as a person who would cover social issues in the world, the problems of people with disabilities. And he helped people solve some problems, difficulties and tasks," says Masha.
"I didn't see any motivation anymore"
The residents of the apartment have a busy schedule: after breakfast, some of them go to work in the workshops, some go to classes at the art studio located right in the apartment. In the process, they are caught by Ekaterina, a teacher who comes here twice a week to help her students master the school curriculum.
— By education, I am an elementary school teacher and a neuropsychologist, it so happened that I have been working with special guys for more than 20 years in various capacities, — she says.
It is assumed that pupils of state children's boarding schools should complete auxiliary school programs. In reality, it turns out differently, Ekaterina admits: "A lot depends on the boarding school, on the director. In general, a lot depends on people."
So many of those who come to live in escorted apartments come to her for training.
— I have never seen more motivation than these guys. This is only possible here," says Katya. — It happens that someone comes up to me and says: "Why are you doing math with her, but you can do it with me? I want to too!". Can you imagine this story in a regular school?
The most difficult issue in maintaining such an apartment is, of course, financial. The operation of such an apartment costs about 700 thousand rubles per month: this includes the cost of rent, salaries of assistants and housewives, and workshop work.
— I conceived this project despite the fact that we had no guarantees of its financing and still do not have them, — says Marina Men. — So far, we are financing it from the foundation's own funds.
By law, guardians of people with disabilities are entitled to a social subsidy. But so far the situation has developed in such a way that the fund does not receive subsidies for the residents of this apartment. Although they hope to fix it here.
Since there are people in the apartment who, in principle, will not be able to live alone, but at the same time have their own living space, in the long term, we can consider the option in which permanent residents will pay a certain fee from the funds they receive from renting their own apartments, says Marina Men. But so far, both the foundation and the residents of the apartment have two main hopes.: This is the help of corporate sponsors and the state.
— Most of all, we count on the support of the state. But government funding is not enough anyway. It always involves co—financing from NGOs," says Marina Men.
An alternative solution may be what the director of the foundation currently calls an "impossible dream."
— We are looking for corporate donors who are interested in partnership for systemic change. Together, we could create a sustainable model of assisted living and work," she tells Izvestia.
While the financial model is only being established, the main source of support — and for the fund, too — is corporate and private orders for ceramics and the very postcards that residents of the apartment make. Moreover, they turn out to be quite professional.
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