System merely awards financial aid if claimant has lost 40% of a bodily function, entailing thousands no longer qualify. RFE/ RL reports

Daniil is five years old but hes spent more time in a hospital than most adults. Last year he was treated four times at the intensive care unit of his local hospital in Magnitogorsk, an industrial city in Russias Urals region.

Despite relying on a daily cocktail of medicines to survive due to a life-threatening genetic disease, Daniil was struck off Russias disability register in October, leaving his family to pay for his therapy themselves.

It was a shock for us, says his mother, Marina Nizhegorodova. Now, we have to pay for the tests and the narcotics from our own pocket. They took everything away from us.

Daniil
Daniil and his mother, Marina Nizhegorodova. Photo: Courtesy Marina Nizhegorodova

Daniil is one of hundreds of thousands of patients who were denied disability benefits last year under new measures that health advocates say are hurting many of Russias most vulnerable citizens.

Russias Ministry of Labour and Social Protection, which introduced the regulations, insists that they are based on the German model which grants benefits according to the type of medical condition and the severity of the symptoms.

Under the new system, health authorities award awards according to the loss of a particular function of the body. Merely patients deemed to have lost at least 40% of one of their body functions can now apply for financial assistance.

As a outcome, the number of Russians formally recognised as disabled has dropped by almost 500,000 in 18 months from 12.9 million in early 2014 to 12.5 million in September 2015, according to government figures.

For Daniil, who suffers from hormonal imbalances, growth problems and severe vomiting due to his body inability to retain salt, health officials ruled that he had lost merely 30% of his functions and therefore no longer qualified for his monthly 13,000 -rouble( 125) disability allowance.

Outrage

The new regulations have sparked an outcry among patients and health experts who caution that sufferers are being pushed off benefits in a bid to cut welfare costs.

A patients condition should not worsen, he should not be deprived of social protection merely because the control mechanism has changed, says Sergei Koloskov, a disability rights proponent and member of Russias public chamber.

No longer approving people who were previously approved simply because the criteria are different is a profoundly vicious thing to do, he says.

The change has come during a period of economic hardship for Russia, which is reeling from the effects of low global oil prices and western sanctions over the conflict in eastern Ukraine as well as the Kremlins own counter-sanctions limiting importations. As a outcome, the Russian economy shrank by 3.7% last year, and is expected to deterioration by another 1% in 2016.

Under pressure from patients and disability rights activists, the labour ministry relented and issued a new decree softening the rules for patients suffering from specific conditions, including bronchial asthma and Type 1 diabetes.

But the amended regulations, which came into force in February, have failed to assuage patients who say the criteria for assessing disability remain unchanged.

St
St Sophias orphanage in Moscow, a place caring for children with developmental disorders. Photo: Artyom Geodakyan/ TASS

A petition launched by Daniils mother last month gathered more than 7,300 signatures. Money should be saved on the salaries of officers , not on sick children, wrote one signatory.

This is a monstrous government that has no fund for sick children but has millions for war, wrote Tamara Gil of Omsk, in Siberia, referring to Russias costly recent campaign of air strikes in Syria. Have mercy on parents who didnt abandon their children in orphanages.

No one cares

Nizhegorodova says she was told that her son needed to have at least five vomiting episodes per year in order to reach the 40% threshold that would entitle him to benefits.

She is outraged. I cant imagine how Im supposed to sit and watch my child die, she said. When he has a crisis, he hurls up every two or three minutes. After 15 minutes, hes already thrown up all the bile in his body and he starts vomiting blood. The ambulance may not make it, he may not reach the hospital in time. But no one cares.

Olga Murtazina, a Magnitogorsk resident whose daughter Kristina was denied her disability status last year, shares Nizhegorodovas anger.

She says Kristina, 17, has suffered from chronic exhaustion, dizziness and fainting spells since her thyroid gland was removed due to a medical fault in 2006.

Authorities ruled that Kristina, who will be on hormonal medication for the rest of her life, was not sick enough to receive disability benefits. She had previously received a monthly pension of 15, 000 roubles.

Murtazina also believes that the new disability systems true purpose is to save money at the expense of Russias disabled population. Asked whether she is considering taking the matter to tribunal, she laughs. Do you really think that would work? she says. Ive long since stopped believing in this.

Despite the reveal of support for her petition, Nizhegorodova too is losing hope of reclaiming her sons right to government assistance. She cant afford to hire a lawyer and says the Ministry of Labour has asked her to stop sending letters of appeal.

All they care about is reducing the number of disabled people and cutting the budget, she says.

A version of such articles first is available on RFE/ RL

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