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«Take me back to the Blagoye delo for the project…»

Zakhar

A supported living home should open in the Russian village of Verkh-Neivinsky. Adults with disabilities will live there. Meet Zakhar, one of them. He has a rare hereditary disease. This guy strives to work in the Blagoye delo workshops, but there are many obstacles on his way. One of them is the fact that the house where he could live has not yet been completed.

Why some people can eat anything they want, and others can`t?

Zakhar Kelchin is a charming 19-year-old boy, a rocker and a nihilist — an ordinary teenager who wants to live his life and do what he loves. Zakhar got his training as a carpenter in one of the trade school of Novouralsk and came to the carpentry workshop of the Blagoye delo and to the supported living project.

His mother gave him up for adoption at birth. Two months later, in the orphanage, he was diagnosed with phenylketonuria, a rare condition, which disrupts the exchange of amino acids. That is why Zakhar’s body cannot digest proteins. Zakhar cannot eat some common products: pasta, rice, bread, sugar, and other products, which are usual to us. The more he eats the food we are used to, the more his brain will be affected. Zakhar has mental retardation, but it can easily develop into a mild or severe one. Being a teenager, Zakhar cannot resist sweets or chips and does not understand why some people can eat everything they want, and others can`t.

Now he lives in a Chernousovskij care home. In fact, it is an orphanage for children with mental disabilities. But Zakhar is already 19 years old — he is too old to study at school, as he has already graduated from trade school. In the end, the boy sits all day in one of the rooms of the care home, as he has nowhere to go. There are a lot of guys around. There are temptations, sweets and chips and Zakhar can easily buy them with a disability pension.  He could die without support, although when he spent a year at the training apartment, the Blagoye delo specialists made sure that he followed a diet and took the necessary medications. The new home of «Sociopolis»— is Zakhar Kelchin’s chance for another life with work, communication, and a diet. It’s a matter of life and death for him.

Maria Kalinina, an employee of the Blagoye delo and Zakhar’s supervisor, says that despite the boy’s sociability, he can easily push a person away. So, sometimes it is difficult to work with Zakhar, and you just need to love him, like any other teenager. The Blagoye delo is the place where people selflessly love him and do their best for him.

«He comes to me and tells me how he buys something, and then regrets that he spent money. Zakhar is sociable, he draws attention, but I’m afraid of what might happen to him next, I don’t want him to end up on the street,» says Maria. She is one of those to whom the young man sends messages with requests to take him back to the workshops. Zakhar is offended that he was «abandoned» that way. 

«Take me back to the Blagoye delo for the project,» Zakhar struggles to pronounce those words in an audio message for another friend of his, Vera Simakova, the director general of the Blagoye delo NGO. Now the Blagoye delo is looking for ways to take Zakhar away, but it is difficult to overcome the unfinished house, the main obstacle. Donations will be able to speed up the construction of a supported living home.

 What is «the supported living»?

People with disabilities often cannot take care of themselves, whether they live in families or in orphanages.  They don’t know how to cook, they don’t know how to pay the bills or what the work is, they’ve never bought anything in a store. In many cases they become hostages of the system of neurological care homes, as such institutions only support life.  But could we call a life of a person a fulfilling one if he or she is completely isolated from the society and is constantly given meds?

Supported living projects are the opportunity for adults with disabilities to live independently, but with the support of health workers and supervisors who help them cope with everyday issues.

Zakhar helps cook in the dining room

They teach simple things: how to cook breakfast, make the bed, go to the store, and so on. At the first stage, specialists help and look after them 24/7, then little by little they reduce the number of hours of support. At first, many people are afraid to stay alone at night. It can be difficult for them to stay in a room on their own during the day. But after a month and a half or two months, a person cannot just cook breakfast for himself, but also sit and think about, without any company.

That was the exact program that Zakhar Kelchin had completed, and then he returned to the care home, as the Blagoye delo does not have the opportunity to provide a permanent accommodation for the boy.

The organization’s team has many accomplishments, but now it continues to pull its projects only thanks to grants that are given for a short while. There is no regional program for the development of post-care home support and nobody arranges a fulfilling life for people with disabilities. But as long as there are those who want to work and live independently, they cannot be left without support.

Written by Ekaterina Yurkova