Time to start thinking about what should be done with pyscho-neurological residential institutions (PNRIs)
The Presidential Human Rights Council held a special meeting recently to discuss respect for the human rights of patients living in PNRIs.
What goes on in PNRIs
A recent inspection of over 600 Russian PNRIs revealed overcrowded institutions with people often denied their own personal space, said Ivan Shklovets, Deputy Head of the Federal Agency for Labour and Employment. In 16% of all approved PNRIs inspected, there were seven people to each room where normally there should be no more than six. Not everyone had a bedside table or even their own towel, and there was one bathroom for every 16 patients. A total of 155,000 people live in approved PNRIs.
Many PNRIs are in need of repair and are not equipped with essential equipment such as anti-decubitus beds. They lack medicines which have to be paid for out of the residents’ and their relatives’ own pockets.
Half the institutions have no arrangements in place to prepare residents for supported employment, with only 42% providing training and business workshops.
Not enough staff are employed in these institutions with one worker to, on average, 12-16 residents.
A lot of patients in PNRIs are living in constant pain, said Nyuta Federmesser, founder of the Faith hospice charity.
“Try not to turn over during the night, lie in the same position and see how your whole body hurts in the morning. People lie in the same position for years and their death is always an extremely painful one. They are bent backwards, their head pushed back and their legs twisted. This is just one example of what goes on there”, she said.
Painkillers are only used in metropolitan facilities. In others, not even paracetamol is used for pain treatment.
Adults and children are treated together for auto-aggression in PNRIs and residential orphanages. “A very typical option is to put a person in an isolation unit and tie them to a bed. They are then fixed in the pose of the crucified Christ. It’s best to use stockings as they stretch a little and leave no marks in case there’s an inspection, and they can also be untied quickly”, Nyuta added.
All these human rights abuses are difficult to detect as most PNRIs are off limits with restricted access for NGOs and relatives (e.g. quarantine is often used as a pretext for not allowing anyone in).
The right to freedom of movement is not routinely available. Most of the patients don’t leave their rooms let alone the institution. This is due to a broad interpretation of the law on psychiatric care and legal competence, according to Ekaterina Taranchenko, Executive Director at the Russian disability organisation Perspektiva.
Conditions for those who care for the disabled
Not everyone who has a mental illness needs to be in a PNRI. According to Anita Soboleva, a member of the Human Rights Council, only people who cannot be helped any other way should live in residential institutions. For everyone else, it’s important that arrangements are made for care to be provided in the home. This is currently being organised by individual members of society and regional authorities, albeit not in a systematic way, says Elena Topoleva, an expert on the Human Rights Council and Director of the Agency for Social Information. There is also a lack of suitable accommodation needed for this.
The current allowance for those who look after disabled people is 1,200 roubles, which is not enough to cover the cost of a travel card, medicines or nappies, say experts. As a result, relatives are reluctantly forced to hand over people to residential institutions.
The situation has become even more complicated with the raising of the national retirement age. Whereas in the past, retired family relatives could look after a disabled person they now either have to go out to work or stay at home but receive no money. Soboleva believes the old retirement age should be retained for those looking after the disabled.
However, for the time being, there are no plans to abandon the PNRI system. According to Svetlana Petrova, the Federation’s Deputy Minister of Labour and Social Security, more than 50 billion roubles have been set aside for the building of new residential institutions.
“You and I realise that we are not giving up on PNRIs. However, no-one wants to live in them in their current state and have to share a room with so many people. That is why we have decided to co-finance the programme from the federal budget”, said Petrova. She also added that the different standards and regulations involved in developing home-care services would entail extra budget funding.
According to Nyuta Federmesser, some of the 50 billion roubles had been earmarked for the building of a new 600-bed PNRI in Nizhny Novgorod with people transferred there from the Ponetaevsky institution.
“Every social activist agrees that this is one of the worst institutions in the entire social sector. I have had a look at the proposal and there is nothing good that can be said about it. It is no different, other than in the name, from what we have already. I believe that having such a facility is totally unacceptable. I’m sorry but swapping one gulag for another is completely wrong”, Nyuta added.
According to Svetlana Petrova, the proposal has been shelved for the time being as a number of changes need to be made to it.
How work is organised in institutions
Anita Soboleva says there can be no corridor system and two nurses on each floor where there are mentally ill residents. “One nurse cannot feed people who are barely able to swallow or who chew badly. Even if he or she had six other nurses or even 35, it would still be impossible”, she said.
According to Vladimir Petrosyan, Head of the Moscow Department for Labour and Social Protection, Moscow PNRIs are planning to impose a limit of four people to each room. At present, 5,900 people live in rooms of five or more persons.
There was general agreement at the meeting that these institutions should be accessible and provide freedom of movement to residents. To do this, the current interpretation of the law on psychiatric care will have to be amended.
In addition, Svetlana Petrova reported that there are plans to create an agency to protect the rights of patients, with a Government Order being issued to give effect to this.
Being able to agree
Elena Topoleva believes that one of the reasons for the slow progress on PNRI reform has been the lack of a general consensus on the best way forward.
“Although there are a number of committed people who are working hard to change the system, there are still a lot of issues on which our colleagues disagree. I hope we can get round a table and come to an agreement on what priority action needs to be taken and on the PNRI concept as a whole”, Topoleva added.