Daniil is five years old but he’s 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 Russia’s Urals region.

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

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

Daniil and his mother, Marina Nizhegorodova. Photograph: 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 Russia’s most vulnerable citizens.

Russia’s 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 grants according to the loss of a particular function of the body. Only patients deemed to have lost at least 40% of one of their body functions can now apply for financial assistance.

As a result, 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’s inability to retain salt, health officials ruled that he had lost only 30% of his functions and therefore no longer qualified for his monthly 13,000-rouble (£125) disability allowance.

Outrage

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

“A patient’s condition should not worsen, he should not be deprived of social protection just because the control mechanism has changed,” says Sergei Koloskov, a disability rights advocate and member of Russia’s 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 Kremlin’s own “counter-sanctions” restricting imports. As a result, the Russian economy shrank by 3.7% last year, and is expected to decline 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 rules, which came into force in February, have failed to assuage patients who say the criteria for assessing disability remain unchanged.

This is a monstrous government that has no money for sick children but has millions for war Tamara Gil

St Sophia’s orphanage in Moscow, a place caring for children with developmental disorders. Photograph: Artyom Geodakyan/TASS

A petition launched by Daniil’s mother last month gathered more than 7,300 signatures. “Money should be saved on the salaries of officials, not on sick children,” wrote one signatory.

“This is a monstrous government that has no money for sick children but has millions for war,” wrote Tamara Gil of Omsk, in Siberia, referring to Russia’s costly recent campaign of air strikes in Syria. “Have mercy on parents who didn’t abandon their children in orphanages.”

‘No one cares’

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



She is outraged. “I can’t imagine how I’m supposed to sit and watch my child die,” she said. “When he has a crisis, he throws up every two or three minutes. After 15 minutes, he’s 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 Nizhegorodova’s anger.

She says Kristina, 17, has suffered from chronic exhaustion, dizziness and fainting spells since her thyroid gland was removed due to a medical error 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 system’s true purpose is to save money at the expense of Russia’s disabled population. Asked whether she is considering taking the matter to court, she laughs. “Do you really think that would work?” she says. “I’ve long since stopped believing in this.”



Despite the show of support for her petition, Nizhegorodova too is losing hope of reclaiming her son’s right to government assistance. She can’t 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 this article first appeared on RFE/RL