The Centre for the Terminally Ill in Minsk asks for help

The “Island of hope” – Minsk centre for the terminally ill children, which was on a brink of closing, is still working. But the problems grow like an avalanche.

Ludmila Gutko, the head of the centre, reminded that the “Island of hope” is a day time care facility for the disabled of the 1^st group with Down syndrome, CCP, autism, epilepsy and schizophrenia.

In Belarusian conditions these people have only one road – to the psychiatric clinic. But, says Gutko, “not every mother can send her child there. I say – mother, because most of our patients (39 out of 45) live in a lone-parent families with their mothers. In 90 percent of the cases, when a mentally disabled child is born, a husband leaves the family. And it is impossible to stay home with the child all the time. Not everybody is able to withstand the pressure, that our parents here are under. And we have a queue on getting to our facility. Now we have 45 people”.

The centre started working in 1996 as a civil organization of adaptation and treatment. Before 2001 it had a guaranteed source of financing from the governmental budget through the Republican Community of the Disabled, as a social project. But then a presidential decree has cancelled any help to the NGOs from the government. Nobody cared about the specialization of the establishment. 
 
The financing now comes from a Swedish charity called the “Star of hope” and from time to time help from other organizations. But the “Star of hope” is limited by its statute – it says that the help could be given only to people of 18 and younger. So today the director of the “Island of hope” is worried that children might lose even the help they receive now.

And the “Island of hope” is more and more in debt. Now, Ludmila Gutko says, the centre owes the state 16 million rubles. “For a social group that our residents belong to, this debt is impossible to repay, even though the fee for staying in our centre has risen more than two times and is now 100 thousand rubles”, – the head of the centre said. 
 
Moreover, from September, 1 the administration had to give up the whole cellar, where ceramics and weaving workshops, a gym and a warehouse were.

And the children grow. They grow older, but not healthier, because their recovery is impossible. Now, says Ludmila Gutko, most of them are adults. It had spawned new problems. “I have a son, a 1^st group disabled person who can’t leave the bed and is in need of care 24/7. The pension with all the additions makes up 172 thousand rubles. But just the diapers, which are vitally important, cost more than 140 thousand. If I wasn’t working, we wouldn’t have survived. While before 18 the parents have somewhat decent state assistance, after that time the financial situation becomes much worse”, – Ludmila Gutko says.   
 
Such situation allows for a conclusion that the state forces the parents to send their children to the governmental care, the head of the “Island of Hope” says: “I think that a civilized country should have more than one variant of life for these ill people. Yes, some people can’t bear the psychological, financial burden of bringing up terminally ill children. At the same time, to my mind, the family, which didn’t hand the responsibility for the child to the state should be rewarded. I would like to attract people’s attention to the living conditions of women, whose children are our patients. Every day, from all the parts of the city they bring the terminally ill children, many of whom are physically grown up. At the same time some of them can’t move, some others can’t tie their shoes. In the evening they take the children back”.   

The Ministry of Labour and Social Security has approved the “Approximate directive about the territorial centre of social service for the population on September, 17. The directive also mentions the daycare sections. On the 1 of July there were 29 such sections in Belarus (9 in Minsk region, 8 in Gomel, 5 in Mogilev, 3 in Brest, 2 in Vitebsk and 2 in Grodno). Before the end of 2007 50 more such establishments and by the beginning of 2011 they should be open in every territorial centre of social service for the population – these are the plans of the Ministry.

Perhaps, the “Island of hope” will become one of them. But the centre cares for terminally ill children, their mental condition and a need for special treatment, the head of the centre fears, might forbid them to be in such institutions. Ludmila Gutko pointed out: “23 of our 45 children suffer from very severe illnesses. But our children are socialized – autism, schizophrenia are on remission. Out parents are afraid that there will be no place for their children in the daycare sections. Nevertheless they still want to raise their children at home, don’t want to deny them. That’s why the “Island of hope” is really their last hope”. 
 
If you want to help the “Island of hope”, call them by phone 255-27-87. The address of the “Island of hope”: 220082, Minsk, ul. D.Serdicha, 9. Work hours: 7.30 – 17.30

The centre will be thankful for clothes (size no less than 46), footwear (sizes 37, 38, 40-42, 44), personal hygiene items (soap, toothpaste). There is a dire need for diapers. Please, pay attention that they must be for adults – most of the patients of the centre need them. 

The organization has an account 3015004058003 in Minsk section “Centralnoye” of “Belvnesheconombank”, code 728, UNN 101127909, OKPO 37413079. 
 
But what the “Island of hope” needs the most is their debt repayment.

http://naviny.by/rubrics /society/2007/11/20/ic_articles _116_154031/