Two parallel realities
What can be done to improve the quality of life for people with disabilities, especially those living in special needs boarding schools? Why are the numbers of children with disabilities in mainstream schooling rising so slowly? How many people in boarding schools for people with disabilities know about assisted living?
Members of the Council for Social Protection believe that parents and carers need to be better informed about the assistance that is available to disabled people to help them adapt to their environment, right from early childhood, and integrate into society. The Council held a meeting on 9th November, chaired by the Deputy Prime Minister Tatyana Golikovaya, to address the challenge of providing education while meeting the complex social needs of children and adults with disabilities and life-limiting conditions. Professor Vitaly Rubtsov, Rector of the Moscow State Psychological and Pedagogical University, highlighted the importance of continuity in their education. He said that there needs to be major reform of all levels of education (from early intervention and pre-school education to primary and secondary schooling and professional training), with a smooth transition between the different stages to allow children with disabilities to progress to adulthood with ease.
Tatyana Signyugina, Deputy Minister of Education, reported year-on-year increases in the number of children with disabilities in education. She emphasised that pre-school education is available to all children, parents simply need to apply for it and to include information about the special needs of their child in their application. Provisional data from the Ministry of Labour reveals that in 2017 and in the first half of 2018 on average around 68% of disabled children of nursery age received some form of support. In 2017 almost 500,000 children with disabilities attended pre-school and 58,000 attended school. The number of children in mainstream schools is clearly growing. In 2017 the figure was over 276,000, in the preceding year it was 241,000. In 2017 22% of schools and 17% of nurseries had the necessary facilities to support children with disabilities. However, there is a consensus among experts that this represents only a small step in the right direction; during the 2017-2018 academic year over 16,000 children with disabilities were not in any form of education and were therefore excluded from wider society.
According to Andrei Tsarev, Co-Chair of the Coordinating Council for Children and Adults with disabilities (within the Russian Public Chamber) and the Chairman of the welfare organisation Equal Opportunities, many parents of disabled children have too little information about the support available to them. As a result, they either send their child to a special needs boarding school or bring them up at home but fail to support and develop them in the appropriate way. There is insufficient collaboration between doctors, social workers and educational establishments and so parents are largely left alone to manage their child as they see fit.
If children do not go to nursery, they tend to be unprepared for school and often end up in behavioural units. Inevitably, they are not properly socialised. Educational organisations and teachers are reluctant to accept children with special needs, especially if they are disabled. 38% of children stay at home simply because no school will accept them. Yelena Klochko, Head of the All-Russian Organisation for the Parents of Disabled Children, believes there should be a government guarantee of protection for these children, implemented on a regional level. Current legislation makes no mention of the mentally disabled, but it should include all the kind of services that people with different kinds of disability need. For instance, a person with cerebral palsy who can barely move a hand and a person who has had a stroke are both simply categorised as disabled, even though they may have been to university. The difference between their needs and those of others with severe mental disabilities should be reflected in the statistics. Nyuta Federmesser, who set up the Hospice Foundation Faith and currently runs the Centre for Palliative Care in the Moscow Department of Health, regards the fact that only a small proportion of people with disabilities are in education and properly integrated into society as a disgrace.
Federmesser is also concerned that many disabled people live below the poverty line. Yelena Klochko had some solutions to suggest. She noted that main financial responsibility within a family tends to fall to the man of the house while a single mother with a disabled child qualifies for benefits. Those of working age receive 5,500 roubles, those not of working age receive 1,200 roubles. For about the last 10 years benefits have not been index-linked, which has created real hardship for many. Klochko suggested that the parents of disabled children should be allowed to earn money, even if it is only through part-time work, without forfeiting any of their benefits. Currently families often decide not to seek work because they are worried about losing their benefits. They should be given the opportunity to top up their benefits. It is estimated that around half a million single-parent mothers with a degree are unable to work because they have to stay at home and look after their children. Legislation should also allow for assisted living arrangements to be linked to disability levels.
Ksenya Alferova, who set up the Foundation I Am, took members of the Public Chamber to a number of special needs boarding schools to show them the reality of the situation for people with disabilities, very different from the picture that is often presented at council meeting and during public debates. The managers of boarding schools in the regions were shown clips of the educational and health provision available to children in the care centres based in St Petersburg and Moscow. It was clear that they are worlds apart. In the regions terminology like assisted living and early intervention are unheard of. Assisted living is automatically dismissed because of the prohibitive cost of renovation. Overcrowding is another major problem that takes a heavy toll. It can mean that a person with Down Syndrome, who goes to school and can read and count, ends up living with a person who is severely retarded, meanwhile some adults are deprived of the right to walk around their own building.
Ksenya Alferova exposed the parallel realities of life for people with disabilities: what is said and what actually happens. Civil servants need to shift their focus, to look beyond the words and the numbers, and think about the people at the centre. Only then will they appreciate the imperative of proving the kind of support that is so urgently needed.
Nyuta Federmesser summarised the point well – people with disabilities are leading lives that fail to conform with modern concepts of human dignity in any way.