“What wheelchair – there’s a war going on”

 

People with disabilities in Russia have been waiting months, even years, for the rehabilitation equipment they need. Officials are using the war in Ukraine as an excuse but the problems really started much earlier.

 

06:05, 15 September 2023

 

Source: Meduza

 

Owen Mcguigan / Alamy / Vida Press

At the end of August, people with disabilities complained about the months of delay in receiving money set aside by the State for the purchase of wheelchairs, canes and hearing aids (these and others are commonly known as technical rehabilitation aids (TRAs)). An independent journalists’ cooperative Bereg found that this had been happening for a number of years but increasingly so this year which has had a significant impact on the lives of people with disabilities. With the kind permission of the editorial board, Meduza has published the full story.

 

On 1 September, Anya Brazhnikova was supposed to attend her second year at a school near Moscow, but instead her mother, Valentina, has had to arrange for her to study remotely. The fact is that the State has failed to provide the family with a wheelchair to which the child is entitled by law.

 

The eight-year old child suffers from spina bifida and has no feeling in her lower body which means that she can only get around in a wheelchair. Valentina and her husband took Anya out of the Malakhovsky orphanage when she was three years old to care for as part of their family. The Volunteers for Orphans charity gave the family an active-user wheelchair for which her parents bought new wheels and a cushion.

 

Technical rehabilitation aids, which the State is obliged to provide for people with disabilities, help make everyday life easier and include wheelchairs, canes, anti-bedsore mattresses, hearing aids and hygiene products.

 

The neurologist looked at me and said “Don’t you ever give up? OK, she can have one!” But she never got one

 

In 2019, the Office of Medical and Social Assessment (OMSE) confirmed the nature of Anya’s disability and revised her individual habilitation and rehabilitation programme. Her mother, Valentina, was able to get an active-user wheelchair included in it.

 

“It was awful because they didn’t want the wheelchair to be included at all”, Valentina recalled. “They said my daughter didn’t need it as she was only three years old. I had to show them a video of her wheeling it. Finally, the neurologist gave in and said “OK, she can have the damn thing, now stop pestering me!” “I’ll stop bothering you if you give me a wheelchair”. Every mother leaves the medical assessment office with tears in their eyes”.

 

The family was never issued with a wheelchair. As a result, in 2020, the local “Family” charity raised enough money through the “Children Instead of Flowers” campaign to buy Anya a new wheelchair. “We didn’t sue the Government at the time as the charity had given us the wheelchair and that State officials had already promised that one was on its way. “I have always trusted people”, said Valentina.

 

However, by 2022, the State still hadn’t provided the wheelchair. In May, Valentina again applied to the OMSE to make sure that Anya would be obliged to receive an active-user wheelchair. Officials still asked her to wait and promised to organise a tendering exercise as soon as possible. But, after months of waiting, Valentina “couldn’t stand it any longer” and in November, together with lawyers from the Spina Bifida charity, filed a claim with the Prosecutor’s Office. Following an instruction issued by the Office, Valentina asked it to file a formal complaint in court which was done in April this year. In June, it was agreed that the statement of claim be given due consideration, with the first hearing scheduled for 13 October.

 

“I don’t know of any family with a spina bifida child that has received a single wheelchair from the State of late”, said Valentina. “Wheelchairs are passed down from older children to the younger ones and then we look to help from philanthropists. Not everyone can put up with the indifference shown by the “social assistance services” – in fact, a lot of them have just given up. But we have decided to fight back. We have taken responsibility for the care of this small child so we have to try and make her life comfortable and fulfilling”.

 

Valentina said that Anya’s first year in school had been a struggle. On arriving at the school for the first time, they immediately noticed there was no ramp access. No help was provided either. The education department told the family that no money was available to provide this, nor was there likely to be any.

 

Of Anya’s first year at school, Valentina recalled “I am 56 years old and had to carry my child up the steps to the school. But I thought what the hell, I’ll do it myself – the older pupils, of course, helped me – but that’s how we managed to get to school. I sat in the corridor while the lessons were being conducted and helped my daughter to move around during break times”.

 

As she has already grown out of her old wheelchair and not yet been issued with a new one, Anya is having to take her second year remotely. On 8 August, Valentina wrote another letter of complaint to the Prosecutor’s Office but doubts that she’ll be able to get a wheelchair for her daughter by 1 September. At the same time, she has joined a waiting list at the Volunteers for the Support of Orphans charity so that she can get a wheelchair.

 

“My daughter needs to move all the time. She is very happy socialising with people and people are always drawn to her. This won’t be the case if she is learning remotely”.

 

There are several ways to obtain State-supported technical rehabilitation aids, each of which has major drawbacks

 

There are three ways for people with disabilities to receive State-supported TRAs:

 

• Buy them yourself and receive compensation from the Russian Social Fund (RSF);

 

• Apply to a regional RSF office for it to purchase the necessary equipment so that it can be provided to a disabled person;

 

• Receive an electronic certificate: the money is credited to a bank card, with funds transferred to the seller once a person makes a purchase.

 

An application for a certificate must be submitted to a RSF regional office which can be done either at a multi-functional centre, or via “Government services”. The certificate option has been available since autumn 2021 with applications considered within five working days.

 

Anna Povalikhina, a lawyer acting on behalf of the hospice charity “Faith”, told Bereg that each of these options has its pros and cons:

 

Procurement by the State

 

The RSF has to decide on the provision of TRAs within 15 days of receipt of an application and within seven days for patients who are receiving palliative care. This deadline can be extended if the State does not have an open contract for the purchase of TRAs. In such an event, the RSF issues a purchasing notice and deals with all other bureaucratic procedures involved in the State procurement process.

 

All mass-produced items such as nappies and anti-bedsore mattresses must be provided within 30 days of purchase and 60 days for customised products. “With in-kind provision from the RSF, a person has to accept what the Fund has purchased and cannot choose their own preferred product brand or manufacturer. Sometimes, people have to wait a long time before the items arrive, the quality of which is not always acceptable to the recipient”, said Povalikhina.

 

Compensation

 

According to Povalikhina, the biggest disadvantage in receiving compensation is that it is always significantly less than the amount originally spent. This is due to the fact that the compensation sum depends on the price specified in State contracts for similar TRAs at regional level. Anya’s mother, Valentina, said that officials gave her the option of buying a wheelchair herself. “But I refused as it would have cost 267,000 roubles, for which they could only offer a maximum of 200,000 in compensation. Where could I possibly go to make up the difference?”, she said.

 

The problem was acknowledged by the Ministry of Labour at the end of June this year. Alexei Vovchenko, the Ministry’s Deputy Head, stated that his department wants to introduce a new system for determining the amount of compensation that people with disabilities can claim for independently purchased TRAs.

 

“Sanctions and price increases last year had a major impact on the TRA market”, said Vovchenko. “Prices for certain items rose by more than 30% and 47% for wheelchairs and it was a similar story for prosthetics. The fourth quarter of 2022 saw a significant shortfall in available RSF funds for all types of equipment which resulted in significant delays in providing people with TRAs”.

 

In March this year, the Ministry of Labour reduced the time period for making a decision on compensation from 30 to 15 working days of an application being received, and to seven days for those receiving palliative care. After that, the money was to arrive within five days (previously, the deadline was a month). However, in practice, these deadlines are being routinely ignored everywhere, said Povalikhina.

 

Electronic certificates

 

“Electronic certificates are useful as the holder doesn’t have to spend a significant amount of money for the goods, as is the case with compensation, and can choose what brand of product to purchase and where to buy it”, said Povalikhina. “At the same time, a person could pay extra out of their own pocket if the amount specified in the certificate is insufficient”.

 

According to Povalikhina, the disadvantage is that the amount credited to the certificate (as is the case with compensation from the RSF) is linked to the price of a State contract in a particular region. So, in order to secure the necessary amount, one has to “find” a suitable State contract provided by the RSF for a similar technical rehabilitation aid.

 

Another major drawback is that the law does not stipulate a timeframe within which money has to be credited to a certificate. The electronic certificate is only valid for 90 days for some TRAs (for example, absorbent underwear and nappies). After its expiry, a new certificate will be required, with people then having to wait for the money to arrive.

 

“What baby walkers – there’s a war going on”

 

Elena Moryakina, head of the legal support project at the Spina Bifida charity, said that none of the children in their care in the Moscow region had received a wheelchair since last year and in Moscow during this year. She is currently dealing with ten requests as part of her work.

 

“People with disabilities need TRAs: some daily and some once a year but they cannot get them either in-kind, or with a certificate, or in the form of compensation”, said Elena. “When we tell the Russian Social Fund about this, they reply saying that we can use other ways to obtain the equipment – it’s just a vicious circle”.

 

The lawyer highlighted the following problem regarding the use of certificates: the RSF issues a notification within five working days, stating that the service has been provided when in reality the money has not been credited. The Fund tells the recipients that a certificate has been reserved for them and that it will be activated once the money arrives. However, the law does not say anything about “activation”, said Elena.

 

The Prosecutor’s Office has acknowledged the problems. According to the department’s data, the RSF did not provide any subsidised equipment on time in 20 Russian regions from 2021-2023. Elena Klochko, Chair of the Council of the All-Russian Organisation of Parents with Disabled Children (OPDC), also spoke about “widespread” complaints from all over Russia about non-receipt of compensation and certificate payments.

 

She explained that the problems began as early as last year. The OPDC reported that there had been ten complaints about delays in the receipt of both certificates and compensation. The organisation has recommended filing complaints with the RSF and the Prosecutor’s Office at the place of residence (The Pro-Palliativ website created by the hospice charity “Faith” has further advice on what to do if you fail to receive a TRA).

 

Natalya Lugovaya, CEO of the charity for people with amyotrophic lateral sclerosis (ALS) “Live Now”, told Bereg that those in their care will receive wheelchairs and baby walkers purchased by the State. Having said that, they are having to wait a long time despite ALS being a progressive disease. By the time the region has got round to issuing a rehabilitation aid, the person is no longer able to walk”, said Natalya.

 

“The following has been heard all too often recently from officials responsible for allocating funds: there’s a war going on and you’re talking to me about baby walkers and wheelchairs – you’ll just have to wait. There’s a war going on so there’s no money. We hear the same story in different regions and there’s not much we can do about it”, Natalya added.

 

Ekaterina Romanova, head of the social and legal department at the “Home with a Lighthouse” children’s hospice, told Bereg that those under their care in Moscow and Moscow region are receiving their certificates on time. The “Faith” charity has not noticed any delays in the allocation of funds for certificates for 2022. However, this year parents of disabled children have been applying to CSOs for legal assistance due to delays in the allocation of funds for certificates and compensation awards for independently purchased TRAs.

 

The administrative office of MasterSlukh, a network of surdology and rehabilitation clinics, told Bereg in August that patients who come to get hearing aids have started to complain  about delays in the allocation of funds for the certificate, with some having to wait for up to two months.

 

“No-one is responsible”

 

Margarita Atarova is the mother of 11-year old Alyosha who is receiving palliative care. The boy has cerebral palsy, epilepsy and an atrophied eye nerve and can only be fed via a gastronomy tube. Margarita told Bereg that they had received money for the electronic certificate on time for two years but that problems had arisen during the summer.

 

“We applied for a certificate to purchase heat-insulated orthopaedic trousers at the beginning of July”, said Margarita. “As my son has a curved body it is difficult for him to put on ordinary trousers but these ones have a fastener that unzips completely (on both sides). On 19 July, I received a letter from “Government services” stating that the amount credited to the certificate had been fixed at 9,480 roubles. The only thing was that they asked me to wait until the payment had been processed and a notification issued. I contacted the Russian Social Fund but was told that there was no federal money in the budget”.

 

Margarita was worried because she and her son were due to fly to the Federal Centre for Neurosurgery in Novosibirsk on 26 September in order for him to have an essential vagus nerve

stimulation (VNS) check. Having warm trousers would ensure the boy had a comfortable flight but, because of the delay, the family was forced to look for an alternative. Margarita could not afford to buy the trousers: she receives 12,000 roubles for child care costs and another 21,000 for her disability pension. Almost all her money is spent on medication for her son. OMSE decided that the boy needed a therapeutic diet but the State only provides a regular mixture which causes the child to vomit.

 

“We made enquiries to Roszdravnadzor but that didn’t help as I still have to buy the mixture myself which cost 2,300 roubles. This feeds my son four times a day and lasts for a week. My 11-year old weighs 11 kilos and needs to put on more weight. We don’t have enough money as I am unable to work as I would lose my pension with a son who needs care. I am not eligible for a loan either because I don’t have a job – there are obstacles everywhere I look”, said Margarita.

 

The money was finally allocated to the certificate on 8 September which enabled Margarita to buy the trousers straight away. But now she is not sure whether they will arrive in time for their flight to Novosibirsk.

 

Alina Polikarpova received a guide dog – a two-year old Labrador – in August last year. By law, annual cash compensation is available for the dog’s upkeep and veterinary care and has to be paid a month after the application has been approved. Alina applied last November but did not receive any payment until February this year. She said that Russian Social Fund staff are ignorant of the law and insist that an application can only be submitted one year after receipt of the previous payment.

 

“Why does the delay in payments concern us so much?”, asks Alina. “A dog lives with a disabled person for an average of ten years, enabling them to receive ten compensation payments for its upkeep. But the constant delays and lack of legal enforcement have resulted in deadlines regularly slipping by one to three months. As a result, a disabled person will receive eight or nine payments instead of ten. This means that money for the animal’s upkeep will have to come out of a person’s own pocket for one or two years which, on average, amounts to 80,000 roubles a year. Not everyone can afford this, particularly those disabled people who don’t work and live on their pension”.

 

Alina explained that this year’s payment will be 32,169 roubles. Last year, compensation was delayed for five dog owners in Kuzbass. All of them wrote to the Russian President but didn’t receive a reply. Prior to that, they wrote to the Prosecutor’s Office to complain about the delays but that wasn’t successful either.

 

“It’s always the same answer from the Russian Social Fund: we don’t have any money because Moscow doesn’t send us any”, said Alina. “We wrote to Moscow and they said they had already

sent us money so this is no longer their responsibility, telling us to refer back to the RSF. As a result, no-one is responsible while a blind person suffers and has to pay for the dog’s upkeep on a small pension”.

 

By the time of publication, the RSF had not responded to Bereg’s request for comment.