Open doors: why change the PSNI system in Russia
There are about 160,000 people in Russian neuropsychiatric boarding schools today. For them, life is scheduled by the minute — from getting up and going to bed to the time of meals and the menu itself. Contrary to misconceptions, most often they are not dangerous to society, but, on the contrary, weak and vulnerable people: patients with mental disorders, people with dementia who have lost loved ones. Why the boarding school management system needs to be reformed, what problems wards face and what alternatives are available — in the Izvestia article.
Svetlana returned to life
The story of 36-year-old Svetlana is similar to many others. Her parents were stripped of their rights when she was a child. After that, she ended up in a boarding school as a teenager, where she lived until the age of eighteen, and from there, by default, she ended up in an adult boarding school.
— Then I thought that my life was over, — recalls the interlocutor of Izvestia. — At the boarding school, everything was decided for you: when to get up, what to wear, where to go. Even if you could do a lot by yourself, no one needed it.
The social project of the Popular Front "Region of Care" and the "Rights Protection Service" created with its support help such people.
In 2022, Svetlana, thanks to the lawyers of the service, went to escorted accommodation, regained full legal capacity, and found a job. She currently works as a clinician and lives independently, but continues to stay in touch with the curators of the Steps Assisted living training project. Svetlana dreams of owning her own apartment, saves up for a vacation in Turkey and is engaged in self-education, for example, she studied to be a nurse.
— I like that now I plan my own day, cook for myself, I can go to the store, choose what to buy. It sounds simple, but I couldn't even dream of it before," Svetlana said.
A house without a schedule
Accompanied accommodation is an alternative to the closed boarding school format. In this case, a person with a disability lives in an ordinary apartment or house, but receives the necessary support.
Nyuta Federmesser, the author of the Region of Care project and director of the Vera Hospice Charity Foundation, told Izvestia that the fundamental difference lies in answering a simple question: "Who are we doing this for?"
— Now the whole system is tailored to the convenience of the staff and the system. The regime, feeding, and the schedule are all designed to make it easier to manage a lot of people. A person there is a recipient of social services, an object. In an assisted living home, the opposite is true. This is a life built around a person, his desires, his rhythm. Do you want tea, not coffee? Do you want to go out for a walk in the afternoon instead of in the evening? Do you want to choose what to wear today? In conditions of accompanied accommodation, this is possible," Nyuta Federmesser shared.
Ekaterina Kantinova, director of the ANO Service for the Protection of Rights, said that it takes a long time to bring the wards back to life after meals and scheduled walks, monotonous shirts and dressing gowns, rubber slates, standard blankets on the beds and a full wash once a week.
— There is no human support in Russian boarding schools as such — we see it in some institutions, but most often in small ones. In large boarding schools, it is impossible to provide individual support even if the management and staff of the institution wish — the staff simply does not have enough time," Kantinova shared with Izvestia.
When organizing escorted accommodation, the focus is on a specific person, on their needs, characteristics and interests, and the program itself is not focused on providing only beds — it organizes everyday life and the opportunity for a person to solve their own life issues in the same way as we all do, only with support and guidance.
— Of course, there are institutions where people have personal belongings that they buy for themselves according to their taste, where full—time employment is organized that promotes rehabilitation and integration into society, where relatives, volunteers and representatives of public organizations come without restrictions, but today there are few such open boarding schools in Russia, - she said. Kantinov.
Mom and volunteer
One of these open boarding schools is the Borsky PSNI in the Nizhny Novgorod region. It was here that Irina tried herself as a volunteer for the first time, taking part in the Open House Day. She cares about the topic of neuropsychiatric boarding schools, because she is raising a daughter with special needs, and boarding schools are often associated with a place about which parents of special children hear frightening stories.
When Irina came to the boarding school, she was surprised at how openly and calmly everything was arranged. The staff spoke warmly about their charges, and the residents of the boarding school looked well—groomed and cleanly dressed - they did not resemble tortured people.
The turning point for Irina happened half an hour later. She saw a girl who went to her daughter's school. Irina realized that her daughter, and maybe she herself, could become residents of a neuropsychiatric boarding school at any moment, because life is unpredictable.
— I have no problems communicating with the guys from the first moment. I admire them for their openness, spontaneity, and kindness. I don't get tired of talking to them, on the contrary, I recharge," Irina notes.
Now that she understands how life at the boarding school is organized, she feels that the internal tension about her daughter's future has significantly decreased.
Dark speculation
The most important myth is that socially dangerous people live in the PSNI, "psychos" from whom society needs to be protected, said Nyuta Federmesser. According to her, in fact, there are the most defenseless who need more attention and support.
The main stereotype regarding escorted accommodation, in her opinion, is "too expensive" or "dangerous." But when a person who has been considered completely devoid of will and abilities for years begins to write poetry or master a craft in conditions of accompanied living, this is the best refutation of the myth.
— This is not an expense, it is an investment in human life, which society pays out of its own pocket anyway — in the PSNI we pay for humiliation, and in the assisted living home we pay for the realization of human possibilities, for the future, — said Federmesser.
In 2024, the Human Rights Protection Service launched the Employment project to help people with mental disabilities find work, during which it faced fears from employers that they were not ready to accept such employees. Ekaterina Kantinova explained that there are very different people in boarding schools, but there are no dangerous ones among them — those who can harm themselves and others are placed in psychiatric hospitals for treatment.
Many of those who once found themselves in a system where life is scheduled by the minute and choices are minimized are people with mental disabilities, bereaved loved ones, the elderly with dementia, and adults with severe cerebral palsy who have no one to care for them. Someone lived with their parents, but after their death could not live on their own, someone moved from orphanages, as it often happens.
— They need support and guidance, not constant supervision. In total, there are about four million people with mental disabilities in the country, and these people live at home on their own or with their family and are monitored by a psychiatrist at their place of residence in a polyclinic, but a boarding school is not a hospital. It's very strange that you live under the same roof with a psychiatrist," Kantinova said.
According to her, people living in boarding schools often want and can live a "normal life," creating families and working. It is worth visiting there just once to see that most of the people living there have hobbies: someone likes to read classics, someone is fond of chess, plays the piano or knits, there are those who like to play football, and those who dream of learning to sing or draw.
— Unfortunately, in many boarding schools, no one asks people what they would like to do. These are often quite primitive, children's activities: simple drawings, modeling from plasticine, simple applications, and this is not enough," Kantinova shared.
If there are assisted living projects in the region, a small number of people still get the opportunity to leave the enclosed walls and switch to assisted living after the training stage, and some after a certain time even begin to live without the support of specialists.
Alexander's right to self-expression
Alexander from the Bor neuropsychiatric boarding school dreamed of becoming an artist since childhood. He graduated from art school with honors, but life turned out differently: technical school, factory, years of habitual work. The man ended up in a boarding school after experiencing a serious illness and difficult life circumstances.
When the Care Service volunteers and creative workshops appeared at the boarding school, Alexander took up brushes, cords and fabrics again. He paints, makes panels out of threads, tries embroidery and macrame. For him, creativity is a way to feel like a part of life, express yourself and be noticed. It is important not only what he does with his hands, but also that his work is seen and appreciated. His works decorate the rooms of the department and are exhibited at small charity exhibitions.
The opportunity to do what he loved brought back meaning and peace to his days — the very inner stability that comes when a person can be himself.
Variables and parallel
Ekaterina Kantinova notes that all stigmas and fears in society are formed due to lack of awareness - there are resonant stories on the Internet, in the center of which is a person with mental disabilities. At the same time, it is not often possible to meet people with special needs on the streets and in public places and make sure that they are not too different from ordinary citizens.
— Under such news, there are always comments from the series "Who let him or her out on the street?" or "Such people should be locked up in a mental hospital." Many parents are afraid of condemnation and sidelong glances and hide their children, adults themselves choose not to leave home once again, and boarding schools are often located far from big cities. That's how they built it back in Soviet times," Kantinova said.
The problem of the reform of modern neuropsychiatric boarding schools in Russia is complex, and its solution should be approached through the joint efforts of the state and public organizations that work with the topic and have their own expertise, Kantinova believes. According to her, it is necessary to give residents the opportunity to choose and manage their lives independently, to provide support and support to boarding school staff, to adopt a law on distributed custody so that relatives and friends can become guardians of incapacitated residents, and to expand boarding schools with thousands.
Nyuta Federmesser noted that it is necessary to start with the main thing — opening doors for volunteers, charities and journalists — and stop making boarding schools into closed institutions, because without this, society's readiness to accept and integrate people with mental disabilities is close to zero.
— It's easier for us to give money for the maintenance of a boarding school than to see such a person as our neighbor. This is the case when "out of sight, out of mind." Until we start talking about it loudly, until we show these people not as objects of pity, but as individuals — with their history, pain, and joys — nothing will change," stressed Federmesser, adding that sunlight is the best antiseptic.
At the same time, boarding schools cannot be eliminated without developing a "menu of alternatives" and offering people to choose for themselves, which means that accompanied accommodation must be massively developed. The most effective support is that which does not end at the moment of leaving the boarding school. When a person has that "own" adult who can be called not only when the refrigerator is broken, but also when they are just lonely or scared, then this is real integration.
— It is necessary to change not only the laws, but also the consciousness of directors, officials, and employees. As long as they see a person as a "DOG" or a problem, rather than a personality, the system will not change. It's a long way to go, but you can only get started," Nyuta Federmesser shared.
To tell people about boarding schools and their inhabitants, the Region of Care has created an art and documentary project, an Exhibition about Stumps, which will open on December 9 at the Museum of Moscow. It will feature works by photographer Yuri Kozyrev and sculptural objects by Alexei Sakhnov, an artist from the Peterhof STUMP.
Acceptance of others
Yaroslava is studying at the Museum Mediation School, organized by the Exhibition about STUMPS project, in order to become a mediator at the exhibition and help people realize the importance of mental health and real living conditions in neuropsychiatric boarding schools. She was inspired by a lecture by Nyuta Federmesser, where she saw photographs of boarding school students and heard their stories.
Yaroslav was shocked to tears by the moment when Nyuta talked about a man who could not walk or sit without a special chair, and his only "entertainment" was to look at a lonely photograph hanging on the wall and wipe the paint off this wall with his forehead.
Yaroslava became a volunteer at the Second Wind Foundation, which organizes creative workshops for people with special needs. Initially, Yaroslava was worried about how to behave properly, studied guides and videos on communicating with people with disabilities, but her worries were dispelled by the participants of the master class themselves, who immediately began to greet her and hold out their hands.
— I understood what it means when they say that special people can give a special look. They just walked into the room with bright and clear smiles and immediately started greeting each other, asking for my name. I'm not worried about them at all, because they don't have duplicity or hidden intentions, they're just happy to get to know each other," Yaroslava said, noting that this is one of the most important skills in life — accepting the other for who he is.
She added that it doesn't require a special personality or years of training, that you don't need to be a hero or a saint to just assemble a craft together with a person, because you will enjoy the process yourself.
Переведено сервисом «Яндекс Переводчик»
