Building Barriers for the Disabled

Building Barriers for the Disabled

Published: June 22, 2011 (Issue # 1662)

Parents of disabled children have become the targets of a new bureaucratic rule that is advertised as an anti-corruption tool but looks more like a torture device.

To prevent parents from stealing their children’s allowances from the state, city officials have introduced a procedure that requires parents to get permission before they spend the funds. To do so, parents must provide dozens of documents, with the exact ones depending on what proof a particular bureaucrat would like to see to become convinced of a parent’s credibility.

Once they get access to the pension, parents are now obliged to keep a record of all purchases they make with that money, including every loaf of bread. They must also be able to prove, on demand, that they did not spend a kopeck of that money on themselves.

The officials enforcing these measures argue that they go a long way to preventing the parents from stealing or misappropriating their children’s money.

The parents, in turn, describe the system as containing a presumption of guilt, deeply offensive for people who are already undergoing a considerable ordeal. It was enough of a challenge already, they say, to bring up disabled children in a country with an anemic state social care system and no charities to speak of.

The chairwoman of the St. Petersburg association of organizations helping disabled children, Margarita Urmancheyeva, said in recent weeks she has been bombarded with phone calls from bewildered parents.

“The procedure is extremely humiliating,” she said.

Corruption and misappropriation of state funds in Russia is rife, but the mothers of disabled children are hardly the problem. Considering the kind of money that is at stake in state support for disabled children, the ruling made by the St. Petersburg authorities borders on sadism.

A child’s disability pension typically amounts to about 5,000 rubles ($172) per month. Hardly enough for a shopping spree for dresses, jewelry, or perfumes. Indeed this miserable sum – even if stolen from the child over a year — would hardly provide enough cash to buy a dishonest parent a vacation in the Canary Islands.

To fully understand the unfair approach of the St. Petersburg bureaucrats, it is essential to understand what sort of lives families with disabled children lead in Russia. In many cases, we are talking about single mothers bringing up a child on their own.

Although no official statistics exist, social psychologists in St. Petersburg estimate that in two-thirds of families, the father leaves as soon as a child is diagnosed with a serious illness.

“It is perhaps most shocking with cancer cases: cancer is an illness that often comes out of the blue, and with the arrival of the child’s illness the mother often faces the disintegration of the family as well,” said one psychologist. “Fathers typically make the same complaint: That the wife neglects them or has become indifferent. And so they flee the nest, in the hope of being better looked after elsewhere.”

Bringing up a disabled child in Russia almost always results in the mother becoming a full-time nurse and having to give up her regular job. Take the case of Nadezhda, the mother of 12-year-old Artyom, who has cerebral palsy.

“It is unfair that the state doesn’t compensate me for working as a nurse for my son. If I asked a professional nurse to do this for me, I would have to pay her, wouldn’t I?” Nadezhda said. “I can’t afford a nurse and I gave up my own job to provide adequate care for my child. So why does the state take this for granted? And how does it come about that by making this sacrifice I have to prove to some dumb bureaucrat that I’m honest enough to decide how to spend my son’s pittance of a pension?”

Obtaining schooling for a disabled child without placing him or her in a prisonlike “correction school” is also a Herculean struggle. Home schooling can in theory be provided by the state free of charge but bureaucratic hurdles make it almost impossible in practice. Too often, a family with a disabled child falls into poverty and misery.

So why pick on the parents of disabled children and make them a target for a clearly ill-conceived anti-fraud exercise?

Suppose we try to visualize the scenario that the St. Petersburg officials apparently had in mind when drawing up this new rule:

One day an exhausted and desperate mother of a disabled child has had enough. At her wits’ end, one day she opens her wallet and buys herself a bottle of brandy without realizing it’s the child’s money she is spending. Then — under the rules set out by the city authorities — the watchful guards pounce and nail the wicked parent. Social justice, Russian style.

Of course safeguarding the interests of disadvantaged children is important. But so is preventing overzealous bureaucrats from further degrading the lives of some of Russia’s most vulnerable groups.

Surely the tables should be turned on the bureaucrats, forcing the people who dreamed up such absurd social security rules to prove that they deserve the positions they occupy.

And, while we’re at it, we could ask them to account day by day for the hours they work, and for the expenses and salaries they receive. Now that would be a worthwhile anti-fraud scheme. 

A full version of this commentary is available at Transitions Online, an award-winning analytical online magazine covering Eastern Europe and CIS countries, at

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