The young woman trying to adopt her friend

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Arina and Nina used to only meet once a week – at activities organised for the care home where Nina lived. Now, Arina is applying to become Nina’s guardian, giving the 27-year-old hope she might finally be able to leave the institution where she has lived her entire adult life.

For the past few months Nina Torgashova has been able to enjoy an independence that had always been out of reach for her – shopping, cooking and washing her own clothes.

Things that would be every-day life experiences for most 27-year-olds.

Nina cooking

image copyrightArina Muratova

But not for Nina, who has always lived in institutions, and moved when she was 18 to what, in Russia, is called a psycho-neurological care home. When the pandemic hit, she was able to savour life outside the home, with a volunteer, Arina Muratova.

Nina recalls the moment she found out she was leaving.

“I never thought anyone would take me. I had thought: “Oh no, I am going to be stuck in the care home.”

It was April 2020 and the Covid-19 pandemic forced Moscow into lockdown. As visits to Nina’s institution were stopped, charities lobbied for volunteers to be allowed to take responsibility for some of the residents until they could start up again.

Arina, a market research expert who loves nail art and embroidery, offered to look after Nina.

But when the 27-year-old got a taste for the freedom she’d never had, she decided she didn’t want to go back.

Her 31-year-old friend was faced with a life-changing decision.

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Arina has been involved in voluntary work for a decade – starting with helping children with learning difficulties and their families. She then became involved in adult care, which is when she met Nina through a Russian charity called Life Route. The charity organises trips and classes for the residents of some Russian psycho-neurological care homes (known as PNIs). Arina started volunteering in PNI 22 – where Nina was living with hundreds of other residents – about four years ago. The care home looks after adults with a wide range of disorders, thought to relate to both cognitive disabilities and mental illness of varying severity.

Arina and Nina at a Life Route camp

image copyright Kirill Smirnov

Nina’s diagnosis remains confidential to everyone except her care home director. This is usually the case for those residents the state judges are unable to live independently. So neither she nor Arina know why she is in the home, but Arina is surprised that she is.

Although Nina struggles with literacy and maths, Arina says she is very capable.

“She is such a quick learner and is well-adapted in everyday living,” she says.

Nina

image copyrightKirill Smirnov

Nina was admitted to a home for disabled children when she was very young, before transferring to the PNI at 18. It is not clear whether she was taken to the children’s home by her parents or was forcibly removed from their care.

She says they visited her there once, but she was frightened and hid under the bed.

“They were drunks. I was afraid. They stank of alcohol,” she says.

Arina says Nina always stood out during her visits with Life Route, taking an active role in the activities and trips organised by the charity.

Nina

image copyrightAleksandr Ivanov

“Nina was a very active person at her care home,” says Arina. “She took part in various creative activities: amateur dramatics, arts and crafts workshops. She took part in sporting competitions, too: she played darts, she played football. Football was something she really missed after leaving the home.”

When the lockdown last spring made these visits impossible, Arina suggested Zoom calls with the residents instead. But from the start is was clear this wasn’t going to work – the home’s internet simply wasn’t strong enough. Other charities helping other care homes in Moscow and St Petersburg were facing similar problems.

Zoom call with the PNI residents

image copyrightZoom

So these charities pressured the authorities to allow some care home residents to be released for the lockdown.

“It was all arranged in a day, and the next day the person was out. I cannot imagine anything like this before the pandemic,” says Life Route’s director Ivan Rozhansky.

Nevertheless Arina admits she was nervous when she made the initial decision to look after Nina. She was counting on Nina’s relative independence, given she needed to work from home.

“There was a certain calculation in taking Nina. I had a lot of work to do, even during the lockdown. I realised I had to live with someone who’d be able to occupy themselves – at least some the time. With Nina it was clear that I’d be able to say: ‘Now I have to work for three hours but afterwards we can make lunch together!'”

Arina and Nina exercising

But Nina’s move into the flat the charity had given the pair to live in during lockdown did get off to a slightly rocky start.

“She had very few possessions with her, just a small rucksack. She looked lost. While I was signing papers brought by the care worker, she walked around the flat. She didn’t look especially overjoyed, and I had been counting on that.

“When I saw Nina looking so lost, I wondered if this had been a good idea. It’s one thing to ask a person in a text if they want to move, but it’s quite different to actually move them.”

But not long afterwards, Arina shared a selfie with the other volunteers of herself with a grinning Nina, arms raised in joy.

Arina (right) and Nina

image copyrightArina Muratova

Not only did Nina start shopping for food and cooking for herself, Arina arranged for her to have a maths tutor – important now she was buying things on her own.

Nina in her maths lesson

image copyrightArina Muratova

“It’s not that Nina doesn’t understand things. She just never needed maths before,” Arina says.

Arina herself began helping Nina with her literacy – she could read and write, but slowly and with difficulty.

“I need to be able to read and write,” says Nina. “To be able to cook for myself, to go to work. I do want to have a job.

“I could make and sell friendship bracelets. I asked Arina: ‘Do you know anyone who might want one?’ She asked her mum, her mum was quite keen. I said: ‘I will sort this!’ Her mum picked the colours, Arina showed me a photo [of the colours], and I started making it.”

Nina weaving a friendship bracelet

Arina says she wanted to make sure she gave Nina responsibility for herself, rather than always taking charge, even if this did not always go to plan.

She cites the example of Nina wanting to learn to draw. Arina found another volunteer who could teach her over Zoom, and explained to Nina that she should make sure she joined the lessons. But after a while she discovered Nina had been missing some sessions.

Nina painting

image copyrightAnfisa Karchevskaya

“I don’t want to chase another grown-up and pester them,” says Arina. “I felt this was the kind of responsibility Nina could sustain, and we had conflicts around it.”

But on another occasion Arina wanted to be more involved in Nina’s life than regulations allowed.

Nina had complained of a terrible stomach ache and was admitted to hospital for several days of tests. Arina was not allowed to stay with her because she was not a relative or guardian.

“Pleas, send Nina some reassuring messages,” she texted to the volunteer group chat. “Poor thing’s terrified, she is having a third blood test and is scared.”

Thankfully there was nothing seriously wrong.

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As the Moscow lockdown eased in June, the Life Route charity was faced with a challenge.

“It became obvious that those people our foundation took to the assisted living flats for the duration of the quarantine did not want to go back to the PNI,” says Ivan Rozhansky, the charity’s director.

These institutions have been a focus of concern for some time.

In early 2019, Russia’s deputy prime minister Tatiana Golikova ordered an inspection of living conditions in 192 psycho-neurological care homes. A consumer watchdog, Rospotrebnadzor, discovered violations of health and safety and other regulations in around 80% of them.

In January of this year Russia’s Ministry of Labour introduced a number of structural changes to the provision of care for those in PNIs, including a move to help social workers provide assistance for some people in private homes rather than in state institutions.

“Obviously, all these changes will not be realised immediately on January 1, 2021, but step-by-step the situation will be changing,” Golikova said.

Cramped conditions

Maria Sisneva from the charity Stop PNI says the quality of life in Russian care homes is poor.

“At a PNI you will have 500-1,000 people living in close quarters, but with very different levels of ability, and different backgrounds, different needs. They live in extremely cramped conditions, at best they’d be two to a small room, often in corridors, in spaces similar to military barracks, isolated from the outside world. They barely have any real social experience.”

The director of PNI 22, where Nina was living, is clear about the benefits of care homes, however.

“The main advantage of psycho-neurological homes is security,” says Anton Kliuchev. “The residents are looked after by professionals, who know exactly how to help and support them, how to talk to them, how to take care of them.”

Care homes for people with specialist needs and mental illness exist all over the world. But from the mid-20th Century in the US and some European countries, a process of deinstitutionalisation started, aimed at replacing long-stay closed facilities with care within the community. Yet, in Russia care homes are still the predominant model.

According to Russian government statistics, as of February 2020 there were more than 150,000 people living in PNIs.

Unlike many countries, Russia’s assisted living provision is only in its infancy. National charities believe that if this alternative system were more established, many care home residents could leave their institutions.

“Right now the system in Russia is such that if a person is believed to be insufficiently independent by the state, there is nowhere for them to go apart from a PNI, or [for those with physical disabilities] an invalids’ home,” says Sisneva.

Life Route began to discuss how the assisted living arrangement could be made permanent for the nine people they rehoused during lockdown. The charity rented four apartments, including one for Nina to share with fellow care home residents Sergey and Ivan. Arina moved back to her own apartment, and began instead to spend one night a week at Nina’s new accommodation on rotation with other volunteers.

But there was another hurdle.

The PNI can only release their residents’ care permanently to Life Route if those people have what is termed “legal capacity” – in other words, the state considers them able to function independently in theory, even if in practice they are in a care home.

Nina does not have legal capacity – all decisions about her life are made for her by the director of her PNI. As Nina is so functionally able, it is not clear why this is, though experts say it can be simply a foible of the system. If, like Nina, someone has arrived from previous care such as a children’s home, and has never been properly assessed, their legal status might never be challenged.

So Arina has applied to become Nina’s guardian.

“One day it just sort of clicked. And I realised I had to do it.”

Nina and Arina at a fancy dress party

image copyrightArina Muratova

If her request is granted, Arina will become responsible for every element of Nina’s life – financial, practical, emotional and medical. As her guardian the PNI will finally share Nina’s diagnosis with her.

The process won’t be straightforward, she says, involving extensive financial, physical and psychological check-ups on Arina.

“Emotionally [the decision] wasn’t easy either,” says Arina. “But once I took Nina out of the care home, she became my responsibility.”

This all-consuming obligation might explain why there are so few people who volunteer to become legal guardians in Russia.

While Arina waits to be granted Nina’s guardianship, the PNI could demand that Nina – whose state benefits they are currently losing out on – return to them at any time.

Meanwhile, Arina says she is still working out the exact role she plays in Nina’s life.

“I can never be Nina’s mum. I will never be able to give her the childhood she deserved.”

But she accepts that Nina sees her as much more than a friend. Nina expects her presence on all important errands: to the dentist, to get her ears pierced, to get registered at the local GP.

Arina telling Nina she has organised football training for her

And these new responsibilities have come at a time when life has been tough for Arina in other ways.

“It wasn’t just Nina who went through a big emotional change. I went through a lot emotionally, too – during this time my salary was cut; I have had complicated developments in my personal life.”

But Arina says all this has brought them closer together.

“Once you have gone through all these experiences [alongside another person], it is hard to backpedal.

“I won’t say I’m not anxious about it. I’m incredibly anxious. And there are certain people around me who freak me out even more. They keep asking me. ‘Have you thought it through? It’s for life!’

Arina watching Nina play football

“I calm myself down by saying that we have a plan.”

That plan is to work towards eventually restoring Nina’s full legal capacity.

Nina needs to be deemed independent by the state if she ever wants to live alone or get a job.

Other than Arina, she has one other close relationship – with a man called Sasha, who she met in PNI 22, and who is now in assisted living in a different apartment. Nina regularly meets up with Sasha in the city, and is clearly fond of him. Arina is aware that Nina may want to eventually marry and she would need legal capacity for that too.

So Arina hopes Nina’s tutoring will give her the option to be assessed at some point.

Nina and Arina at the computer

“Examiners look closely at a person’s reading, writing and counting abilities,” Arina has heard.

The process is not publicly available but anecdotal accounts suggest it can include everything from being expected to dance or sing a song, or even know the price of a loaf of bread.

Arina says they won’t apply for Nina to take this test until she is as prepared as she can be.

In the meantime, Arina is involved in all the important moments of Nina’s life.

Nina and Arina hugging

“Maybe I’m just the type of person that is not afraid of responsibility. It is an unexpected – but actually a good thing – that has happened to me.

“I love her. There’s not much to it. I love her very much.”

My Friend from a Care Home is available to watch now on YouTube.

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