Improving care homes for disabled people in Russia.
The President’s Human Rights Council has held an extraordinary meeting to assess the state of human rights in Russian care homes for people with physical and mental disabilities.
What goes on in these care homes?
Ivan Shklovets, Deputy Leader of the Federal Employment Service, has revealed the disturbing results of an inspection into care homes for people with physical and mental disabilities; more than 600 of them are overcrowded; 16% have seven people living in rooms designed for no more than six; some patients do not have their own bedside table or even their own shelf inside a cupboard; and one toilet is often shared by up to 16 people. The homes included in the inspection have 155,000 people living in them.
Many homes need renovation and lack basic facilities such as special beds for preventing pressure sores. Medicine is in short supply and patients (or their relatives) often have to pay for medicine out of their own money.
Half of these homes have no training or education facilities. Only 42% have workshops where the patients can learn a trade.
There are severe staff shortages. On average every carer is expected to support between 12 and 16 people.
Nyuta Federmesser, founder of the hospice charity Vera, has revealed that many people in care homes are in constant pain. She said, “You try spending a whole night without moving your body, lying in exactly the same position, and see how much your body aches the next morning. The patients lie in contorted positions for years on end and often die in severe pain. They are twisted backwards, their heads jutting upwards and legs splayed apart.”
“Only the care homes in the capitals offer their patients pain relief medication. The rest do not even give out paracetamol. Adults and children suffering from auto-aggression are treated together in the same place. They are usually kept in isolation and strapped to their beds as if in a crucifixion position. The staff use stockings to tie the patients’ limbs because it restricts their movements without leaving a mark; and they know they can untie them quickly in case there’s an impromptu inspection.”
It is difficult to uncover human rights abuses of this kind because most care homes are closed institutions, with access limited for NGO volunteers and even the patients’ relatives. (Staff think up excuses for not letting them in, claiming, for example, that the patients are in quarantine.)
Yekaterina Taranchenko, Executive Director of the organisation Perspective, described the current state of affairs, “In many cases the patients’ ability to move around is severely limited. Most never leave the building or even their own room. Increasingly, the staff quote laws on psychiatric care and disability as a way of justifying the restrictions.”
Working conditions for people who care for the disabled
There are many people with mental disabilities who really should not be living in care homes at all. Anita Sobolevaya of the Human Rights Council said that only people who cannot be helped in other ways should live in these homes. The rest should receive the assistance they need to be able to stay in their own homes.
Yelena Topoleva, an expert serving on the Human Rights Council and Director of the Public Information Agency, said that the current system is clearly not fit for purpose and patients are being failed by members of local and regional authorities. She added that the necessary funding to pay for appropriate housing is simply not available to them.
People caring for disabled relatives currently receive 1,200 roubles per month. This amount would not even cover the cost of travelling to buy the medicine and incontinence pads that patients needs. In reality, the expense often falls relatives of the patients.
Once carers reach pensionable age, the situation gets even worse. In the past pensioners with disabled relatives would look after them in their own homes but the pensions are so meagre that the can no longer to give up work and live off their pensions once they retire; they have to continue working. Sobolevaya believes that people who care for disabled family members should be allowed to take early retirement.
New care homes
Despite its failings, there are no plans to close down the current care system. In fact, the Deputy Minister of Labour and Social Security, Svetlana Petrovaya, has announced that the government will be investing over 50 billion roubles in the construction of new care homes. She explained, “There will always be demand for care homes but we recognise that nobody wants them to continue as they are, with too many people living in a single room. We have therefore taken the decision to use federal funds to finance a new building programme. We will be developing new care services based around the home, with new standards and new ways of operating. This will undoubtedly require additional funding.”
Nyuta Federmesser announced that some of this 50 billion rouble allocation will be spent on building care homes to house 600 patients in Nizhny Novgorod. Patients will then be transferred to them from the care home in Pontaevsk , which has the worst reputation of all Russia’s care homes. However, Federmesser has been highly critical of the new project. She said, “I cannot think of anything positive to say about it. Apart from having a different name, these new homes will be no different from the ones we have now… The whole project should be blocked. Forgive my language, but replacing one gulag with another gulag is simply wrong.”
Svetlana Petrovaya said that the construction project had been temporarily halted while changes are made to it.
Working practices within care homes
Criticising the layout of care homes, Anita Soboleva said, “People with mental disabilities should not be living in rooms that lead off a central corridor and have just two members of staff stationed on each floor. It is impossible for one carer to feed six people who can barely swallow and chew properly, let alone 35 people.”
Vladimir Petrosyan, Head of the Moscow Department of Labour and Social Care, said under new proposals the number of people living in one room within Moscow care homes will be limited to four. Currently there are 5,900 patients living in rooms with five or more people in them.
All the delegates at the Council’s extraordinary meeting agreed that care homes should be open to the public and patients should be able to move around them freely. This will require change in the law on psychiatric care.
Svetlana Petrovaya also announced plans to create a patients’ rights service and the Russian government has issued the relevant authorisation to bring in the service.
Learning to negotiate
Partly attributing the slow pace of reform in Russia’s care homes to a lack of consensus, Yelena Topleva said, “Although there are many people working hard to reform the care system, there are still many issues on which there is no consensus. We need to learn to conduct a reasonable argument and find ways of addressing people’s legitimate concerns. I hope that we will learn to negotiate in an appropriate manner and finally reach agreement on broad principles and the most suitable course of action.