NGOs urge progress with new law on mental disability
NGOs ask for a new law on guardianship for those with mental disabilities
The authors behind a law on ‘distributed custody’ have suggested that people living in psycho-neurological residences (PNIs) should have more autonomy and choices, supported accommodation should be developed, and attitudes towards people with mental challenges must change.
This bill was passed in the State Duma in its first reading almost three years ago, but has yet to reach a second reading. Public figures were told of the advantages of the legislation (the introduction of external guardians for people with mental disabilities, overcoming the isolation of institutions, as well as a legal foundation for supported living) at a press conference at TASS.
As explained by the chairman of the Synodal Department for Charity, Bishop Panteleimon of Orekhovo-Zuyevsky, all PNIs should be open institutions.
“There is always ugliness in closed institutions; openness allows various misunderstandings to be avoided. If we can not see what is happening behind closed doors, then we can not effectively help the residents. It is necessary for people, in particular volunteers, to be present inside the residences for the situation to improve,” added the bishop.
As the participants of the press conference were told, at present the leaders of psycho-neurological residences alone manage the property of incapable citizens. At the same time they represent the customer and social service provider, and are the only guarantor of their quality.
“No one checks on these people. At the residence, on the so-called floor of mercy, they simply lie and stare at the white ceiling. They cannot go outside for a walk,” said actress Ksenia Alferova, co-founder of the I Am Charity Foundation. “Even the staff do not know their names. In the view of the residences, they are ‘vegetables’. We do not see all of this ourselves, and learn of it thanks to volunteers when they start complaining about the horrors that are occurring; because of this, they are reluctant to go to these institutions.”
“It’s as if they are locked in a big cell. We have travelled all over the country and see that nothing is done in the interests of these people. 190,000 people do nothing every day. They can not be in charge of their money. This leads to a large amount of fraud inflicted upon vulnerable people,” says actor Yegor Beroev, co-founder of the I Am Charity Foundation.
He reminded the audience that, despite the demand of the public to carry out PNI reform, the state has allocated just 2 billion rubles for 17 new residences.
According to experts, the bill must be passed as soon as possible, otherwise constantly evolving requirements may delay consideration.
“I, as the sister of a young woman with a disability, can say that only thanks to our combined efforts can the situation change. It is boring to constantly write and talk about why the state needs to invest not in residences, but in the development of care,” said Natalya Vodyanova, founder of the Naked Heart Foundation for Children. She added that children do not survive in such conditions, that it is a slow painful death.
“When Oksana was born, the doctors said that she would not live longer than 10 years. Today she is 31 years old. She has friends, she started communicating with the help of alternative communication and is preparing for supported living” said Vodyanova.
All changes in PNI reform are tied to this bill, says Anna Bitova, director of the Special Childhood Centre for Therapeutic Pedagogy. According to her, there cannot be supported living without guardianship, but few people want to take responsibility for another person. The new law will allow NGOs to act as guardians for people. Currently the only guardians are the leadership of PNIs.
“If we want to solve something, we need to discuss it. To make these institutions accessible to volunteers and the public, we need to maintain the independence of the residents, and we are already moving in this direction,” concluded Grigory Lekarev, Deputy Minister of Labor. “We have already started supporting people with mental disabilities from birth, there is an understanding of early help, and gradually we will regulate all stages of a person’s life so that their quality of life improves. At this stage, it is necessary for charities, NGOs and the public to work through all the issues of the bill with representatives.”