Report on major activities and issues arising from the visit to Belarus by Linda Walker and Ellen Charlton in January 2004

This is quite an extensive scheme at 400 square metres, eight times the size of an average house, and requiring total internal reconstruction. The speed at which the work progressed amazed the local people and the work is a great credit to Barney McElholm and his company. The men were assisted by students from the Gomel College of Building. The students proved very receptive to the ideas and skills they were taught.

The charity is very grateful for all this hard work donated by the many tradesmen who volunteered their time so generously . Their efforts have created what is probably the first Respite Care Centre in Belarus.

Once the bulk of the work was complete the pace necessarily slowed down and Edward who did such quality joinery at Klimovka has been fitting and hanging doors and building glazed entrance partitions.Paul Rowley, from Shakespeare Flooring in Stoke, and his colleague Steve did a great job laying the carpets and vinyl in early January.

They had problems with the quality of the adhesive and the latex but managed to overcome these, so all the flooring is complete, except for the sensory room and one bathroom.Harold Jackson, from Lancaster, spent two weeks at the Centre in January putting up shelving and other joinery work, and working with Edward who is hanging the doors.

Terry Kowarin, from Stoke, went out to work on the plumbing.David Walker will go out at the end of February to try to get as much of the work completed as possible, whilst Mags Whiting works with Natasha, the manager, to sort our furniture, curtains and equipment for the Centre.

At the time of writing in February we were still having problems getting the fire alarm system certified and finalising the ventilation system, but we hope that some time in March all will be completed. We have a lovely group of staff waiting to start work.

In September I took part in the first round of interviews with Russell Kirby of Manchester Disabled Children’s Team, plus Olga from Social Protection and Natasha, who will be manager of the Mayflower Centre. We interviewed about twenty people in groups of four and then in late October the best of these came back for a second interview, along with a new group of applicants.

Mary Isherwood, Head of Rodney House Special School in Manchester helped with this second round of interviews. We selected a psychologist, a nurse and nine carers to who we offered a job when the Centre is ready. Three other potential carers were told that we still wished to consider them, and all were invited to come for training in January.Natasha organised the training with professional input from Ellen Charlton, Deputy Head of a Special School and co-ordinator of our group in Blantyre.

I watched the first morning which was a wonderful mixture of getting to know and trust each other exercises, plus developing an understanding of disability. Ellen talked to them about working with children with cerebral palsy, learning difficulties and autism and discussed handling children, coping with challenging behaviour, dealing with parents, feeing children, massage and many other aspects of care.

When I went to see the group on the final day to present them with certificates they were full of enthusiasm for the job and can’t wait to get started.

I also went to visit a number of families in November and then more on this visit. Natasha is building up a picture of the families who need support and starting to think about which children could stay in the centre together.

Work will begin by inviting families to visit the Centre during the first week or so and then having three or four children to stay at first, possibly with their mothers. We may have extra staff on duty during this early period so they can meet as many of the families as possible. Once they have all settled in, we have worked out a rota which will mean that we can work comfortably with nine or ten carers.

All staff will be on a three month trial period.

Before we open, besides the technical issues, we need to have the curtains made (School No 5 have agreed to do this) and buy the furniture. We have sent out a lot of disability equipment for the Centre, including for the sensory room and soft play room but not very much furniture, so most of this will need to be purchased in Gomel.

We don’t have to equip all the bedrooms initially as no more than four will be used in the first few weeks. We can send out further furniture on the convoy in April and then see what still needs to be purchased after this.

Costs of running the Centre: I am still waiting for further information about a realistic amount to allow for the food for children and staff, and on the last day of my visit I learned about the possibility of employing the staff though a disability association and reducing the tax we have to pay.

And the cost of fuel goes up and up, so it is not possible to be precise about the running costs for the Mayflower Centre, but I think we can safely assume it will be between £16,000 and £18,000 for the first year. We have so far received over £6,000, including Gift Aid.

School No 5

Following a visit to Britain in Autumn 2002 by senior members of education and social protection in Gomel Region, it was decided that we should put access and disabled toilets into School No 5 so that children in wheelchairs, or with severe mobility problems can attend.

This is a Special School which was set up for children with mild learning difficulties, and during the last few years it has begun to educate some children with quite severe learning difficulty. In the Summer we brought the Director, Aleg Baikachov to visit Special Schools in Britain to increase his confidence in the school’s ability to cope with children in wheelchairs.

Rodney House

Anya and Nazar returned to Rodney House with me and Ellen in early January. Stas and Anton will return on February 22nd. And Ira will go back to Rogachev as soon as the doctors say she has spent enough time on her new legs. She had them fitted in early December and was walking on them in no time. I visited the kindergarten where she will go in Rogachev and it is delightful.

All the children now go to Rogachev sanatorium once a week to go swimming and visit the association once a week to spend time with other children and have lessons there. They have a ‘defectologist’ who comes to work with them in the house, but she is not impressive.

There are parents and children anxiously waiting to start school, some of them currently taught at home, and one little girl who has been at Rechitsa Boarding school and has already left once, so she could start at No 5 in January, and has had to go back to Rechitsa. It would be very disappointing if all these children had to wait until September. I asked if the Education Department could guarantee to fund the helpers from September if we could help out for two or three months if the children could start school in March. This was immediately agreed to by Larissa. At first she was saying we would need to pay them through a three month summer holiday as well but I immediately rejected this as being unreasonable.

Aleg worked out a way to use existing staff who would like to earn more and work extra hours for a few months. They would then not need any payment in the Summer. As for the driver problem the best compromise seems to be that one of our drivers – Nicolai or Andrei – should collect the children in the morning and the No 5 driver would take them home in the evening. It might also be necessary to help with fuel for the initial period. I have spoken to Lukianovich, the Director of Education for Gomel Region, about this and I think he has agreed that the Education Department will take on these costs in the future.

The carers are all wonderful and are doing a great deal with the children. When the British Ambassador came to visit they put on a wonderful puppet show and did some wheelchair dancing with the children. An excellent massagist works with them several times a week and they have occasional input from a visual impairment specialist.

The carers are trying to improve their speech and more help from a speech therapist would be good. Sergei has recently won an award for his role in caring for the children and a journalist in Gomel is planning a story about this. Great publicity for the house, for the development of children with special needs and a good role model for Belarussian men!

Rogachev Association

The association staged a lovely concert for the Ambassador’s group (Brian Bennet, Martin Child, the Consul and Anna Litvinova from the Embassy spent over a day with us, visiting Klimovka, the Mayflower Centre, School No 5, Zhuravichi, Rodni House and the Rogachev Association).

The Association also organised several visits to families for Ellen and me. We went to see 13 year old Nastya who lives with her sister and mother in a small dark house in a village. Nastya seems to have paralysed legs which are folded underneath her. She is intelligent and studies from a mainstream curriculum with teachers who come out to her home. She has a very dominating mother and it was impossible to ask her any questions as the mother leapt in and answered for her. We would like to get her to the Association Centre so she could spend time with other teenagers, and perhaps stay overnight at Rodni House.

I have also asked the Association to try to get her to Rogachev Sanatorium for a holiday and some physio. Unfortunately she will have to go with her mother. It would be great to give the poor girl a chance to get away and have a break sometime.

We visited three year old Lisa, who has been staying in Rodni Kut for respite whilst there are only two children in the house. She lives with her great grandmother, and has cerebral palsy. Sveta works with her under the early intervention scheme.

And we also went to visit a family in Garadyets, about half an hour from Rogachev. We were horrified to find when we arrived that the child, another Nastya, had been having epileptic seizures all day and she was getting no treatment. The grandmother who was looking after her said that she had not received any medicines in the last six months, they were relying on herbs. We fetched a doctor from the nearby village, who gave an injection and Liena rang Igor, the Hospice doctor from Gomel and he came out later in the evening. Igor prescribed and gave them medicines and told the family to ring him if they needed further help. The grandmother told us that all Nastya’s problems were caused by a traumatic birth, but they will have been greatly increased by having many untreated seizures.

Beekov Home for People with Mental Disabilities

This is a place we have been delivering aid to during the last couple of years. It is a rather miserable place to live, largely because there is so little for the residents to do. For the future it would be great if another charity would like to take this place on as a major project. At the moment we are just trying to make life a little better for the most underprivileged of all its residents.

When I visited in October, with Russell Kirby, I was shocked to find that 19 year old Liena, who is quite intelligent was sitting on the floor in a room full of profoundly disabled and non verbal young people. Pasha, who sanatorium volunteers know well, was also on the floor in this room. They both needed wheelchairs, of which the home had several – in the store. So by the next visit they had their wheelchairs and they seem to have stayed in those.

I learned that in this block of the building there are 42 people – some bed ridden, some very elderly and some with severe mental disability, and after six in the evening only one person is available to meet all their needs. I offered to the Director, and then to Alexandra in the Social Protection Department, that we would sponsor someone for about three months to work with Liena to help her to become more independent, so that she can be moved into another part of the building; and to work with the autistic and profoundly disabled young people who spend much of their time in an empty room. If she can make a difference to these young people, then perhaps Social Protection will employ someone to work with them in the future.There was a young woman called Natasha who was already working at Beehov as a sanitary nurse (a very low level post) but she had been studying to be a teacher.

We decided to try her, and although she is not very dynamic she has managed to do some work with the young people and get some of them drawing and taking part in simple activities. She has also painted animals on the wall and greatly brightened up the room. In early December when I visited Beehov, I took some of the toys from Rodney House and the young people were delighted to have them.

Ellen Charlton has done some work with Sveta, the Early Intervention worker we sponsor in Rogachev, so that Sveta can help Natasha to use symbol communication in her work at Beehov. Natasha is also working with Sasha, a young man in a wheelchair who we took from Beehov to Gomel in October to have his sight and hearing tested. He now has glasses and will soon have some good quality hearing aids. He is learning to read and Natasha is helping him. Sasha is desperate to leave Beehov and we have managed to get Alexandra to agree to move him to Duyanovka, near to Klimovka.

In October I also met an eighteen year old girl at Beehov who is on crutches and who seems to be quite bright. Olga was educated at Rechitsa Boarding School and it must be so hard for her to be in an environment with so little to do. She will also now move to Duyanovka within the next couple of weeks.Sasha had been hoping that he could go to Duyanovka, partly so he could be with Lova, who he was very fond of. Sadly, in December, Lova lost his battle against kidney failure. He had been having dialysis for almost a year and the drivers from the Education Fund took him into Gomel twice a week for this, with Duyanovka looking after the third visit. All those who have known Lova remember him as a fun loving, extrovert young man. Harold and Lynne Jackson, who hosted him on his last visit to Britain are planning to put a seat in the garden at Klimovka where his friends will be able to sit and remember him.

Zhuravichi

Ellen Charlton worked for a week at Zhuravichi in the Summer after the sanatorium holiday, with Louise Weller from the Loyne School in Lancaster. They managed to do some training of staff but it was almost impossible for them to work with the two groups of children who would have benefited most – those in cots who may need a better method of feeding and those with severe learning difficulty and/ or autism. The Director and staff were not at all keen for Ellen and Louise to wrok with these children. When I spoke to Alexandra Baccaras, the Deputy Director of Social Protection, about Ellen’s visit this January I said that it would be very helpful if Ellen could work with these groups for a couple of days. Alexandra agreed, and spoke to Raisa about this but once again, she was much happier for Ellen to work with teachers and give them advice, and did not want her to ‘go and stare’ at the more disabled children.

Rechitsa Boarding School

It was in July that we at last managed to get some of the children at Zhuravichi re-assessed and four of them moved to Ulookavye, a lovely orphanage for children with mild learning difficulties, and a further five moved to Rechitsa Boarding School for children with cerebral palsy. Ellen went to spend a couple of days at the school and was greatly impressed with the way the staff have helped the children to settle in. Ira is now reading, which is wonderful after she spent eleven years lying in a cot looking at a white ceiling. The school are saying that they hope to be able to keep her there until she is nineteen as she has made such a late start on her education.

The atmosphere in the school is very positive with the children behaving as though they are not disabled at all – dashing about the corridors, taking part in all sorts of sports activities and enjoying a social life that is just not possible for them at Zhuravichi. The Director, Ivan, is quite concerned about children moving from Rechitsa to School No 5. As far as I know there is only one child planning to make the move and she and her mother are very much looking forward to her being able to live at home. However, she will not get the same level of education in School No 5, so we will have to see if it is adequate for her. Eventually it would be wonderful if access could be created into a mainstream school in Gomel and more kids could stay at home and go to the local school, whilst other children were moved from Zhuravichi to take their place at Rechitsa.

Republican Rehabilitation Centre in Minsk

The last convoy delivered aid to this Centre and they were grateful for this. They are very keen to have more craft materials, educational materials and equipment for a sensory room. Although the Centre is enormous and appears to be very rich, they have no budget at all for such supplies. The Director was away and I asked the Deputy if anything had been done yet to change the statute of the Centre. The place is wonderfully equipped for very disabled children and yet most of the kids they take have relatively mild disabilities.

They have decided that it is impossible to take children with severe learning difficulties, but they can take children with profound physical disability now. I asked them about Makar from Zhuravichi, and Ira, who is about six and does not speak, but seems to have good understanding. She has recently learned to walk and as her ankles are bent at a very strange angle, there may be something the Centre can do to strengthen her legs before further damage is done. They agreed they would take them both, if Raisa asked them to. I spoke to Alexandra at Social Protection and she promised to arrange it. These two children could spend six weeks or so in Minsk and then two more, who would benefit from the experience could go next. They will be accompanied by a carer from Zhuravichi.

Children in Trouble

It was a decision by the government that all charities must pay a commercial rent, which forced Anna to buy a building for the Hospice. The same pressure has forced Children in Trouble to give up half their hostel, and turn two of the bedrooms into their offices. They now only have three bedrooms for families to stay in, but they are hoping in the near future to be able to set up another sanatorium for mothers and children, near to Barovlyani, the Children’s Cancer Hospital. Children and their parents will be able to stay there for holidays, and also during their treatment. Children in Trouble’s German partners have already promised 80,000 euros towards this project (!) and Evgeny is negotiating with the health department to try to get their support.

Anna and her staff have moved into the new building which they bought last September with support from the Anne Roberts Foundation and a large donation from Sam Lupton, one of our most generous supporters. They have prepared the ground and first floors to make a base for all the staff to work from and a day centre for children with disabilities. They are still looking for funding to complete the top floor to make flats for three families, and they are also hoping to make a garage and workshop in the grounds. Anna has enough money for salaries till the end of March. She has been promised another European Union grant, but even if this materialises soon, most of it will be for the setting up of adult hospice care. We applied for a grant from the Tubney Trust in October, but did not succeed. I will try to submit another grant application to a Trust Fund which specialises in hospice support. In March Lynne Hutton from Springhill Hospice in Rochdale, plus two researchers involved in palliative care, will go to Minsk to do some training of Hospice and Hospital staff. This is funded by money left over from an earlier grant from the Victor Zorza Hospice Trust. We can very likely get further funds from them to continue the training programme, but not for salaries or building work.

Fostering and Family Support

In November, Galina who runs the Social Centre and Children’s Shelter in Rogachev, told me about Vanya who was ten and had a lovely family waiting for him, but his mother had not yet had her rights removed. This process might take three or four months, so Vanya would have to stay in the shelter till then, as there would be no money to help his foster mum to look after him. As money was the only thing stopping Vanya from going to the new family where he longed to be, I agreed that we would pay about £30 a month until the paperwork was completed.

Ellen and I visited the family and met Vanya’s ‘super mum’. A fantastic cook, she looked after everything in the house including fixing the plumbing and making the bunk beds. She had fostered the children of her alcoholic neighbours the year before and they had settled in happily and Vanya was obviously delighted with his new brothers and sisters.

In Minsk we went to meet a mother who we have been sponsoring for several months after a request form the Hospice. Inna has been receiving support from the Hospice during the last couple of years and this has helped to lift her out of depression. She had a wonderful husband who adored their disabled son Dima. Many men leave when they have a disabled child, but Inna’s husband was devoted to his son. Tragically, he developed throat cancer and just before he died he asked Inna to promise that she would never let Dima go into an institution. She spent six years on her own with a profoundly mentally disabled boy, hardly ever able to get out of the flat.

Our sponsorship has helped her to employ a carer to sit with Dima so that she can go to work. Inna now has an administrative job in a café where she feels liked and needed and it has changed her life. ‘Wouldn’t it be great to invite her to come for a holiday with Dima?’ said Ellen. I replied that it would be perfect but I was trying to think of a family who would want to take Dima. So Ellen asked Inna if she would like to come for a holiday in her house in Blantyre. She could not believe it and then we rounded off the evening by giving her one of the fur coats which we had been wearing to protect us from the minus 10 temperatures. Ellen can’t wait to make Dima a sensory corner and try some massage on him, and to take Inna out on the town. It was a very moving end to a busy and positive fortnight.

Linda Walker February 17th 2004