Russia finally passed legislation to improve living conditions in psychiatric care homes, but this breakthrough is still sorely lacking

On April 24, Russia’s Labor Ministry published amendments to the rules governing work in the country’s psychiatric care homes. These changes could seriously improve the lives of all Russian citizens with mental disabilities, including those living outside of these types of facilities. That said, the new regulations only apply to group homes that are currently under construction or undergoing renovation. The director of the Center for Curative Pedagogy, Anna Bitova, worked on developing these amendments — for Meduza, she helps break down the changes that Russia’s psychiatric care homes are set to undergo.

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According to data from the state statistical agency “Rosstat” and the Labor Ministry, Russia had 523 working psychiatric care homes in 2017. At that time, they were home to more than 157,000 people with mental disabilities, the majority of whom are incapacitated. As a rule, these people live in group homes because their relatives are no longer able to take care of them, or because they were brought there directly from orphanages for children with mental disabilities.

Previously, these adult group homes were the only option for people with mental disabilities. But living conditions in these institutions often leave much to be desired: Russia’s psychiatric care home system has been called a “modern Gulag.” Group home residents, including those who are fully capable, are subject to strict regulations: they are not allowed to choose their own clothes, go to stores, prepare food, go to the toilet in a closed stall, use a fork, or store personal items in their nightstands.

Russia's attempts to reform these care homes has been going on for several years, but it’s a slow process. The latest amendments to the rules governing work in psychiatric care home, which will come into effect in January 2021, are among several documents, which promise to improve the situation in these facilities at least partially. However, with regard to sanitary norms, these will only apply to group homes that are currently under construction or undergoing renovations.

At-home living is becoming the priority

In the new version of the decree, people with mental disabilities (or their guardians, in the event that they are incapacitated) can choose how exactly they want to receive their care: at home, at day-patient facilities, or simply through in-patient care (meaning in psychiatric care facilities). All three options can also be combined. What’s more, the document says that the government should aim for people to remain in their homes, rather than placing them in psychiatric institutions.

Anna Bitova notes that previously, all difficulties related to care were supposed to be resolved through in-patient facilities. “The family has problems? Please, you can always put [them] in a group home. But for a person who needs constant assistance to remain at home and be eligible for support in a familiar environment is already a possibility.”

However, Bitova also points out that at the moment home support is minimal. As a rule, social workers visit twice a week, in order to help with buying groceries, which is not enough. That said, several regions have begun to change their long-term care systems, albeit in the form of a pilot project. In these particular areas, social workers are set to visit every day for four hours. “They will feed you, buy groceries, help [you] wash, and talk with you. This will significantly decrease the in-flow into group homes, including ones for children. If a child is at school for part of the day, and then a caregiver or nanny comes to spend four hours with them, then [the child’s] mother can work. And this is another life!” Bitova says.

At the same time, she notes that there are currently hardly any services that offer at-home assistance, in addition to a lack of relevant specialists. “The entire structure needs to be organized, people [need to be] educated. It’s clear that this will happen slowly, in stages.”

Parents will be allowed to visit children’s care homes freely

Even if a child is placed in a psychiatric care home, their parents will be able to visit them freely, and even have the option of living with them at the facility, as well as taking them home. Moreover, these facilities will now be required to help parents who are having difficulties raising a child with mental disabilities. Care homes will explain how to care for these children, offer consultations on their development, and inform their parents if the child is in need of medical assistance.

Living conditions in care homes will improve

Today, a single psychiatric care home can house anywhere from 200 to 1,000 residents. According to the new decree, these facilities should have no more than 150 people, with no more than four people to a room (before it was six people to a room, but in practice it could be up to 15). There will also be a separate living room and kitchen (or combination kitchen and living room space) for every six people, as well as an entrance hall and a bathroom.

Residents will also be given the opportunity to to wash and iron their own clothes, prepare food, and get water from a cooler in the living room. Previously, this was forbidden. Bedrooms will include screens or curtains to provide residents with privacy from their roommates, and toilets will have cubicles.

More personnel will be working in psychiatric care homes

The decree also seeks to solve the issue of personnel shortages, especially among socialization and caregiving specialists who work with people who are largely bedridden. “The new decree introduces supplementary rates within the recommended norms, aimed at socialization specifically,” Bitova explains. “[This includes] trainers and rehabilitationists — people who are meant to ensure that the residents do not deteriorate, and are busy [and] develop. It’s possible that some of them will return to a regular life. But for this [to happen] psychiatric care homes need investment.”

What remains to be done

Once again, Anna Bitova underscores that some of the changes to Russia’s sanitary and epidemiological norms and regulations (new requirements for the number of residents, etc.) will only apply to psychiatric care homes that are currently under construction or undergoing renovation: “The Labor Ministry expects each region to design a road map that will show how they plan to achieve the targets laid out [in the new norms],” she explains.

That said, these changes are just the beginning of the large-scale reforms that Russia's psychiatric care system needs. Bitova notes that an ideal care home should be arranged in an apartment-style, with no more than two people per room. But for now, they won’t be able to attempt an abrupt move away from the current system, in which all of the rooms are accessible via a common corridor.

In the long term, the reformers have plans to switch to a model of assisted living (which is not mentioned is the document) and practically do away with the psychiatric care home system all together. However, Russia is still a long way from achieving this. Regardless of the fact that each region has recommendations for organizing assisted living, the amount of innovation is limited. In Moscow, where nearly 100,000 people could require access to these services, 300 spots will appear in the near future, at most, Bitova says. “In many countries assisted living is mainly offered by non-governmental organizations. The state pays for their services, monitors the quality, and establishes standards — but this is still a market story. In Russia, the compensation mechanism for services rendered is still unclear,” she explains.

In addition, civil society leaders believe that adopting a law on distributed custody is a necessity, which will allow responsibility for a person deemed legally incapable to be shared among several individuals or legal entities. “Usually the question of custody arises when [a person] has no parents, or their parents are elderly. Today, when a person’s [parents are unable to look after them] they end up in a care home almost automatically,” Bitova says.

According to her, people very rarely decide to take on this kind of responsibility on their own, but taking it on with someone else is a different story. “One person says: ‘I will be responsible for where and how they will live.’ And the other [says] ‘I will take care of their health and finances.’ They divide the responsibility, and it becomes less difficult,” Bitoa explains. “And if there are no [such] individuals, the institution of legal entities [acting] as guardians exists all around the world. They are audited and funded by the state. This could work here too. Many church parishes and NGOs are prepared to act as this kind of legal entity. And that would ease the situation.”

Text by Natasha Fedorenko

Translation by Eilish Hart