Comprehensive support for children and adults with disabilities was discussed in the Public Chamber
The Public Chamber focused its discussion on the reform of the psychoneurological boarding schools (PNIs), as well as issues of accompanied residence. These PNIs are equivalent to residential care in the UK.
A meeting of the Coordinating Council for Disabled Children and Other Persons with Disabilities was held on 26 December at the Russian Federation Public Chamber.
The discussion was moderated by Andrei Tsarev, Deputy Chair of the Public Chamber Commission for the Development of the Non-Commercial Sector and Support of Socially-Oriented NGOs, and Elena Klochko, Co-Chair of the Coordination Council, Chair of the VORDI Council and Head of the Department covering problems for Children and Adults with disabilities, in the government Council relating to issues of guardianship in the social sphere.
As Elena Topoleva, Chair of the Public Chamber Commission on the Development of the Non-Profit Sector and Support of Socially-Oriented NGOs, noted in her opening remarks, problems relating to support for the disabled have not been greatly reduced; as soon as one problem is resolved, another appears – including difficult issues such as reform of the PNIs.
The Ministry of Labour has developed a regulation on the work of PNIs to protect the rights of patients. This should work to complement the rules for organising the activities of social institutions, according to the Ministry of Labour’s explanatory note published on the portal of regulatory legal acts on 13 December.
The new regulation is expected to come into force from January 2021.
However, not everyone agrees with this new proposed regulation.
“The new document does feature improvements on what the Ministry of Labour presented in March” said Sergei Koloskov, president of the Down Syndrome Society. “Our proposals and those of the Centre for Therapeutic Pedagogy are taken into account but in general this document still preserves the existing system. It doesn’t state the most important thing: PNIs are only for living in and the main day-to-day activities should take place outside these boarding schools.”
Mr Koloskov also added that there need to be clearly specified rules to ensure that staying in a PNI is voluntary, with patients not being sectioned as a result of the regulation, and to ensure that patients receive psychiatric care. Furthermore, he noted that services people receive from the PNIs should be comparable to those that are provided through local hospitals and doctors’ surgeries.
“Yesterday I got a call from a woman I know, the mother of a child with autism who asked me: ‘What should I do? Which PNI should I send him to? I’m 82 years old, I have Parkinson’s – I can’t cope’. It might seem that PNIs are not something which affect our lives but they can quickly become important to us through our relative’s experiences. I urge you to take these provisions seriously. We have time to react, we have to make this document for ourselves. Since the reform was announced in 2016, this is the only act that can affect the lives of people there. We suggest we write to the Deputy Prime Minister, point out the shortcomings and ask for them to send this document back to the Ministry of Labour’s working group in order for the extra suggestions to be incorporated”, concluded Mr. Koloskov.
The meeting was organised by the Public Chamber Commission for the Development of the Non-Profit Sector and Support of Socially-Oriented NGOs, the Public Chamber Commission for Social Policy, Labour Relations, Cooperation with Trade Unions and Veterans’ Support, and the Public Chamber Commission for Family, Motherhood and Childhood Support.
The full recording of the discussion can be viewed on the Russian Federation Public Chamber website.