Disabled Children Seek Social Rights
Published: June 6, 2012 (Issue # 1711)
Disabled children have been excluded from society for a long time, and one of the main causes of this situation lies in the closed nature of Russia’s social system and the undefined legal status of mothers of disabled children. These were the conclusions reached and discussed by representatives from non-governmental organizations and social foundations, along with members of City Hall’s Committee for Social Policy, at a press conference in St. Petersburg on May 31.
“There is a so-called doctrine that disabled children should be removed from society,” said Yulia Belousova, president of the Courage to Live non-profit alliance, a group of charity organizations that works with disabled children.
The state system is primarily centered around live-in care homes, says Svetlana Guseva, head of Mothers of the World, an association in St. Petersburg of mothers with disabled children. These women call themselves “mother-nurses” as they are forced to take full-time care of their children in order to avoid sending them to an institution for disabled children. They have asked the government to recognize their status and what they do by making “mother-nurses” an officially accepted term.
“Russian laws do not support mothers with disabled children,” said Guseva.
“If a mother is the only one who takes care of her disabled child, she has to choose either to put her child into an institution and work, or keep and care for the child at home and receive only 1,200 rubles ($35) a month in financial aid.
“We have no laws that help to make it possible for mothers to keep such children in the family. The whole system depends on families with disabled children having both the mother and father present. In such a family situation, the mother inevitably stops working to take full-time care of the child and the father has to take all of the financial responsibilities upon himself. Fathers in such families often leave, or even worse — commit suicide or murder.”
Due to the absence of nurses and social workers in schools, mothers are often encouraged to send their disabled children to live-in care institutions.
“The institution system originated more than 100 years ago. Most countries used to hide their disabled children. Now Russia is deliberately putting off reforming this social sphere. But society has changed,” said Guseva, whose child has cerebral palsy. “Now society is ready to accept my son.”
In this respect, the issue of inclusive education, in which disabled children are included in ordinary school classes, is one of the most burning topics. Experts agree that studying together may be helpful not only for disabled children, but also for regular schoolchildren without serious medical problems, as it will help develop a tolerant attitude in society starting at a young age.
A draft bill on education is now the only official document that might allow disabled children to study in state secondary schools.
“When the law is passed, not every disabled child will be covered by it,” said Guseva. “The secondary school system is very rigorous; integration in schools is based on intellectual criteria. Moreover, for children in wheelchairs there will be further problems, because ordinary schools don’t have the facilities needed to accommodate the chairs,” she added.
The Accessible Environment federal program sets the goal of providing disabled people with equal access to services and other aspects such as transport, information and communication facilities by 2015.
Galina Kolosova, deputy chairman of City Hall’s Committee for Social Policy, said that the committee had made an effort to raise the amount received by stay-at-home mothers of disabled children from 1,200 rubles ($36) to minimum wage by sending a proposal to the Pension Capital Fund, which set the current stipend.
“At the moment we have only received a reply saying that our proposal will be taken into account when future changes are made in the federal law,” she said.
“In St. Petersburg we have been able to increase the monthly payment amount families with disabled children aged seven to 18 receive from 2,900 rubles ($86) to some 4,000 rubles ($120),” said Kolosova.
“For children up to seven years old it remains about 4,000 rubles. We have also introduced a payment of 10,000 rubles ($300) per month for children considered to be the most disabled (level 3) by the Individual Rehabilitation Program.”
Marina Shishkina, a deputy for the Just Russia party, said that the social sphere — in particular the issue of disabled children — is an area in which the government should not try to save money.
“Rational approaches can only be worked out by a group of people who are not indifferent to the matter — a group that should not be made up of deputies with party affiliation, but by members of professional committees,” she said.