Posted 23 августа 2023,, 11:26
Published 23 августа 2023,, 11:26
Modified 24 августа 2023,, 07:24
Updated 24 августа 2023,, 07:24
Elena Petrova, Natalia Seibil
Ulyana Glukhova is the chairman of the regional branch of the All—Russian Organization of Disabled Children and the mother of a disabled child. She knows about the new trouble for those who have been unlucky since birth, firsthand:
— The delay in payments is already a year or more. We are talking about strollers. Diapers, as the most necessary, have been purchased and are being issued. There are no problems with diapers. But strollers, walkers, and other technical means of rehabilitation — yes. Moreover, compensation for self-purchase is minimal.
Families in which disabled children grow up know that a good wheelchair is needed for a child when everything else — a cane or a walker, which are much cheaper — will not help. Ulyana patiently explains:
— If a child needs a stroller, it means that not only the musculoskeletal system is broken, but since he does not walk, there is a transformation of the spine and chest, because the child is constantly in a supine-sitting position. Such children need functional strollers. To buy such strollers, the fund directly says now that there are no funds. And our children have to wait for years.
4.5 thousand disabled children are registered in the Astrakhan region. 500 families participate in the organization itself — 4 times more have applied for help — 2000! And everyone is waiting. It takes precious time when a child can be helped to put him on his feet. Otherwise, he will forever be chained to a wheelchair or, even worse, to a bed. But the state is not up to the poor and the poor now.
Igor Bakursky, the father of 5-year-old Zakhar, applied to the Social Insurance Fund for a standing support for the baby back in November 2022:
— So much time has passed, and so far — nothing. They refer to Moscow that there are no funds there. They send, and there these tenders are not taken, purchases do not take place. I called them about two weeks ago. They say: wait! Well, as long as you can wait, nothing happens. It is necessary to study with the child. He has cerebral palsy.
Previously, the Social Fund, though not immediately, but purchased expensive technical means of rehabilitation (TSR). It was necessary to wait, but there was hope. After Ukraine, everything became standard, or rather, standard-bad. And expensive. At the same time, you need to wait even longer. An unsolvable problem for the Russian industry is the sanitary chair.
Many parents say this: why do we need this chair, we could just cut a hole in the stool, sheathe it. Here's a chair with sanitary equipment for you.
The Ministry of Labor recognizes that due to the sanctions, the TSR has risen in price by 30%, and strollers — by 47%. In addition, the Social Fund has a hole in the budget, although 42 billion rubles have been allocated this year to support families with disabled children. Now the Ministry is working on the issue of allocating an additional 17 billion rubles for wheelchairs and other means, but for ALL disabled people. It is unknown how much of this will go to the children. It is also unclear how long it will take to work out this issue. A month? Two? Three? In March of this year, the department made a good decision — to consider the applications of those in need not for a month, but for two weeks. Just what to consider if there is no money?
Ulyana Glukhova notes that funding is much weaker this year:
— We understand that the budget goes for other purposes, we put up with it, but lately it has become unbearable.
There is a catastrophic lack of money in families with disabled children. In order to replenish the family budget, fathers leave their wives alone with the Herculean task of providing sick children alone — and goes to earn money where they pay, without stint, says Ulyana Glukhova:
— Parents of disabled children, dads, first of all, go to defend their homeland, earn somewhere to get out of this difficult situation. The mother is left alone with the child. It doesn't always work out the way we want. The software is lame. Unfortunately, even if you are a member of the SVO, everyone is equal here.
— Chairs with sanitary equipment do not buy high-quality, good ones at all. That is, children cannot get chairs with sanitary equipment for a long time more than two or three years. In fact, they are deprived of the opportunity to go to the toilet. Sometimes we write like this — let the children go to the toilet. Such a chair costs more than 200 thousand. And Russian freaks — 20 thousand. And maybe a hundred thousand, — Ulyana Glukhova is indignant.
It is also impossible to establish the production of diapers that do not leak, so parents buy imported ones for their own money — as long as there are Japanese ones and there is money. They cost twice as much as relatives.
Parents also buy medicines for children for their own. Now we only have to dream about imported equipment. Zakhar's Italian aluminum stroller has become small, you need to buy another one — and where to get it?
— He needs up to 50 kg. And he has up to 25 kg. It's good, it's made of aluminum, there are all the bells and whistles. And there's nothing in these, it's heavy, the wheels are deflated. You don't want that. And the baby still weighs. Do they want mom or dad to lift 30 kg each? A child plus a stroller under 20 kg. Impossible. Neo Kimba is a good stroller. She has a folding frame, and the cradle can be put in the car. That's what I would like to get! But they are 300 — 330 thousand now. They didn't even give us a wooden high chair for feeding… at least go to the prosecutor's office. Such an outrage we have in Astrakhan. I think it's better in Moscow, » Igor hopes.
Igor and his wife have twins. One — Egor — was born healthy, and with Zakhar — trouble happened. Exobot helps for children with cerebral palsy. This is a comprehensive medical device for children who themselves cannot hold their own weight in an upright position. It allows you to properly control the movements when walking. The exobot costs 317 thousand rubles, but it is impossible to get it according to the quota — it is not registered in public procurement. The Bakurskys bought it themselves, or rather, opened a collection in Votsappe, people helped:
— They helped us. The director from his wife's work, her friends, my friends. The collection was announced. Some operate through charitable foundations, but we decided so. Manufacturers came and demonstrated everything. They said that our child is suitable. It's true. Our child went on it.
Igor was not given a support for Zakhar's standing. They gave walkers for 135 thousand according to the certificate. But that was 2 years ago. Now only 20 thousand are allocated for walkers. You can't buy anything for this money.
Zakhar's disability was extended until his 18th birthday — until 2036. Now he needs a good stroller, but he doesn't have the right one. For the first time, the Bakurskys received an ordinary wheelchair, but it was impossible to use it — in the multi—storey building where they live, there is such a ramp that it is impossible to move down it in a Russian-made wheelchair — the wheels do not allow.
— We need a wheelchair with big wheels like Kimba Neo. I know, my neighbor, she's a member of the VORDI, she got it by individual purchase. It now costs 270 — 300 thousand. Production Germany. Even if it's not there, there are two stores that order it. Our neighbor has already received the second one. We wanted one too. I look at the certificate, there are 81 thousand. And what will you buy for 81 thousand? Nothing. An ordinary stroller. And he needs a special one. We have such a mess in Astrakhan…
He and his wife had no children for a long time. Then they did IVF under the state program. The doctors didn't say anything for a long time, says Igor:
— Maybe something affected the hospital, maybe the age was not the same. Maybe they did something there. You won't know now. I would have said earlier, maybe I got on my feet earlier. But they didn't tell us anything for a long time — hypertonus and that's it. We would have started doing professional massage. And we only found out later. We look, the muscles are not like that. Muscle tone. They gave me medicine. They were both on a ventilator. Not born on time, and twins.
Igor went to sea all his life. With the birth of twins, I had to leave my favorite job — there was no one to take care of Zakhar. They give a pension, Igor is paid 10 thousand rubles for child care. But he himself says — can you live for this money? It's good that my wife is working.
Zakhar was not taken to kindergarten, they said that they could not look after him if one of the parents would go to the kindergarten himself.