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Life outside the psycho-neurological institution

August 1, 2023, 19:55 159 Author: Albert Pavlov Personal experience of care for a person with an intellectual disability.

This is Sashko, who has been living in my family for more than 7 years. Until the age of 24, he lived in psycho-neurological institutions - first in a children's home, and then in a children's psycho-neurological institution in Kalynivka in the Zaporizhzhia region.

Sasha was declared incompetent by the court, which is, as you know, the highest measure of social protection, which leaves a person almost without rights. A large number of such people in Ukraine live in psycho-neurological institutions (PNI) all their lives, and the director of the institution is appointed as their guardian. It is practically impossible for the inhabitants to leave the PNI.

When I applied to the court to appoint me as a guardian, the judge frankly told me that he did not know the exact procedure, because in his practice there had not yet been cases where a relative, rather than an outsider, became the guardian. Therefore, I had to collect a lot of documents and hold two meetings in order to issue a guardianship.

Sashko is an unusual and talented person. His main qualities are an amazing desire to help in something, and he is also very neat and requires cleanliness from others. In principle, he can do almost everything that an ordinary person does, except for reading, managing money and other intellectual tasks. But in everyday things he has a completely normal logic. Of course, there are conflict situations, as with every person.

Before the war, Sashko dreamed of visiting Germany and buying a house near Kyiv - and his dreams partially came true, but, unfortunately, because of the war. He lived near Munich for more than a year. He did not buy a house near Kyiv, but for now there is an opportunity to temporarily live in such a house. The House in the Zaporizhzhia region, where Sashko lived with us for 6 years, was destroyed thanks to the russian invaders. Psycho-neurological institution also ended up in the occupied territory.

What do these 7 years of Sasha in our family mean to me?

First, it is the understanding that people like Sasha can live not in psycho-neurological institutions, but in society. They can not just sit in the PNI and look at the TV or the wall all day - they want and can be useful to society and perform many tasks better than ordinary people.

Secondly, I realized that our system of guardianship boards, which should supervise the living conditions of such people, does not work at all. In 7 years I have not had a single call or visit from the board of trustees. The situation is the same during the stay of such people in psycho-neurological institutions.

Third, we must do everything we can to enable people with mental and other disabilities to live in supported living homes or foster families, rather than in psycho-neurological institutions where their rights are constantly violated. For this, in addition to creating such houses, it is necessary to start the "money follows people" mechanism. This means that when such a person begins to live in an supported living facility or in a foster family, the state must spend no less money on him than was spent in a psycho-neurological institution. Now, unfortunately, guardians receive 2-4 times less funds than boarding schools. And houses of supported living, created by charitable foundations, sometimes do not receive anything at all, although there are much better conditions than in PNI.

Finally, I would like to remind you that our Helpus fund collects funds for purchase of an inexpensive house in the Cherkasy region, to create an supported living facility. We also support the existing "Oselya Viry, Nadii and Liyubovi" in the Ivano-Frankivsk region.

We really need your support to implement all these projects. We are especially grateful for regular payments, reposts and informational support!

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