Dire situation of people in Russia’s homes for people with learning difficulties
“If we allow CSOs and citizens to know what’s going on inside PNRIs, they’d wreck the whole system”: Update on the review of psycho-neurological residential institutions (PNRIs)
On 7 December, a round-table discussion was held on “Reform of PNRIs: How do you move a mountain?”, organised by Miloserdie.ru.
“We know the system for dealing with those with physical or mental disabilities inherited from the Soviet era involved keeping them out of sight in vast, crowded institutions which, once you were in, it was very difficult to get out of; where people were denied the most basic human rights and opportunities; where they often had no personal possessions, privacy or personal space and where they were often subject to various forms of abuse”, said Yuliya Danilova, editor-in-chief at Miloserdie.ru.
Experts say that little meaningful progress has been made on PNRIs, despite the issue being highlighted by various CSOs, volunteers and journalists.
According to Anna Bitova, Chair of the Board of the Childhood is Special Centre for Curative Pedagogy, the root of the problem is the lack of help in the home (i.e. in a semi-residential setting). At present, a third of PNRI residents are disabled people who have come from orphanages; a third are elderly citizens whose relatives are unable to support them at home; and a further third are disabled people who’ve found themselves in a desperate situation, e.g. having lost their family or their home.
Bitova believes that the reform process has to start with the organisation of home help in order to gradually reduce the number of PNRI residents. Although this might take years or decades, Anna sees this as preferable to relocating people in larger PNRIs.
Will providing care become more difficult?
Experts also see a solution in the introduction of the Bill on shared care, i.e. where a person in the State system can be looked after not only by the Director of a PNRI, but also by a relative, friend or not-for-profit organisation. However, progress on preparing this law has been very slow. Anastasia Zhdanova, a lawyer working for the Centre for Palliative Care at the Moscow City Health Department, commented that federal authorities have concerns about a lack of preparedness among guardianship agencies to implement such changes.
Anastasia believes that shared care requires an individual approach tailored to the needs of each person and feels there are too few guardianship agencies and those that do exist don’t always have the necessary range of skills.
“I think it’s a mistake to assume that care will become more difficult with the introduction of the proposed law as it’s much easier to resolve a person’s situation if responsibility is shared. Let’s take a classic case where providing care solves children’s problems: they’re placed with a family, the conditions are bad and the children are taken away. Then I’d ask: Why don’t you go into a PNRI and defend the rights of people with disabilities? They could be locked up there, have no teeth because of a lack of any treatment, as well as suffering major breaches of human rights. Shared care responsibilities will greatly benefit disadvantaged people as there would be more individuals and organisations on hand to defend their rights”, said Ivan Rozhansky, Director of the Life Path Foundation.
A law for those living in PNRIs
Elena Zablotskis, a lawyer working for the Childhood is Special Centre for Curative Pedagogy, said that the shared care Bill was currently stalled, with the current version only dealing with improving the lives of PNRI residents.
Another reason for the impasse is the risk of the PNRI system “collapsing” if other care givers are involved. “If we allow CSOs and citizens as co-carers and co-guardians to know what’s going on in PNRIs, they will simply destroy the system without there being anything to take its place”, said Zhdanova.