Harrowing reality of a Ukrainian home for the severely disabled

In at least one Ukrainian home for children with serious medical problems children have to be bound to their beds; some have not been outside for years and there can be as few as one carer to 14 children. This is the situation in Ladyzhyn in the Vinnytsa oblast.

Hryhory Zubkov, the home’s Director explains:

“We have children here with the most complex diagnoses. Out of 146 people, only 36 are able to care for themselves. Some can even do themselves harm, can seriously hurt themselves. To protect them, we have to tie them to their beds”.

In order to take such children outside or at least out of their beds, a carer needs to be watching over them every minute. There is, however, a catastrophic staff shortage.

“According to the norms, each carer can only cover 6-8 severely ill children. Yet for each carer here there are 14! Thankfully they’re very experienced and work with huge commitment. They work 24 hour shifts, then have several days off.”.

Anna Gerashchenko, a volunteer at the home:

“This is an impossible load. The carer has to feed each child 5 times a day, clean up after all of them. The bathroom and toilet aren’t fitted out for patients in wheelchairs, grown up kids have to come to the assistance of the carers who do their backs in with this work. To take a child from the second to the first floor, you also need to literally carry him which is why children on the second floor are virtually deprived of any chance to be in the fresh air. It’s only the few who have the luck”

She explains that the volunteers also take part in looking after severely ill children. “They can’t be left without supervision. While one is climbing up, another pulls at the curtain, and a third is in danger of falling out the window.

You can’t even leave children with Down’s syndrome who show no signs of aggressive behaviour without supervision. They begin to move about and can harm themselves. . Therefore such children in the home are sometimes also restrained, after all one carer for two wards can’t keep an eye on everybody”

The most severe patients can’t eat by themselves. Even as adults some are fed lying down through a bottle. The home has equipment for getting patients up, Ms Gerashchenko says, but there needs to be more staff in order for each child to receive quality attention.

Due to the huge workload, carers are only about to worry about the children’s basic everyday needs. Another volunteer, Natalya explains that the staff have no time to play or talk with each child. She says that the last time they were there, they noticed that the televisions were on, this being the only way the children get to hear people speaking.

Mr Zubkov explains that there are children who suffer from muscular dystrophy and who need a special diet since their organism has difficulty coping with what the others eat. The home can’t buy such food itself and has to rely on volunteers. Anna Gerashchenko adds that another problem here is that the children, who need to eat 5 times a day, cannot eat quickly. The carers are rushed off their feet and can’t give each child the time they need.

There are 8 volunteers in the home, each working with an individual child. They take the child outside, play with them for an hour. As a result four people can already walk themselves, some have learned to feed themselves, and children with severe motor skill disorders enjoy handicraft activities, count, read and draw. Ms Gerashchenko explains that together with the Director, members of NGOs met with the head of the Vinnytsa Regional Department of Labour and Social Policy, but were tied that there was no funding available for anything extra.

Parents only visit around a third of the children, and then not regularly. The others end up stuck in the ward for years with no possibility of developing.

The volunteers stress that these children should not be sentenced to languish like this, that some of them, with Down’s syndrome or cerebral palsy could find work.

The home wants to do renovations to one of the blocks in order to improve the living conditions. The building was originally designed as a children’s camp and is absolutely not set up for people with serious illness. At present all the children are in two of the wards, while one is empty. They want to make that a ward with wheelchair access, and make a ramp connecting the first and second floors so that the children can get outside.

Anna mentions that for young lads in wheelchairs it’s extremely important that there should be a bathroom with wheelchair access so that they can go to the toilet or have a shower without women needing to help. They want to make the wards more spacious with each child having their own personal space. And they dream of creating a play area in each ward. “After all for a child stuck in bed a change even within one ward is a real journey into the world of childhood.”

If you would like to contribute to the repair work, please contact the volunteers at [email protected].

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