Updated at 19:18,26-07-2017

Helping children in Belarusian institutions that arent orphanages

The Guardian

Helping children in Belarusian institutions that arent orphanages
A nurse pushes a child on a wheelchair at an orphanage for mentally disabled children near Vesnova, Belarus, in 2013. Photograph: Vasily Fedosenko/Reuters
Letters from Richard Carter, who says the reasons for institutional placement in former communist bloc countries are complex and varied, Norma Brier of Norwood, and Linda Walker of Chernobyl Childrens Project UK

Your report on the condition of children in institutional care in Belarus ( Dozens of children on the brink of starvation found in Belarusian orphanages , 21 April) should be more shocking than it is, largely because such conditions are still found all over the former communist bloc, nearly 30 years after the system collapsed; the story is all too wearily familiar. Nevertheless, it is important that it is aired again but one point that needs to be made is that these institutions are not orphanages.

Studies indicate that the proportion of children living in institutional care in the region is 2%-5%, and (except in times of war or natural disasters) they will have at least one living parent. The reasons for institutional placement are complex and varied, but include: large families who are unable to care for their children, stigmatisation of and discrimination against children with disabilities, and parents who are (falsely) judged by professionals to be incapable. In addition, poverty is an underlying factor, though not the primary one.

The cure for this situation lies in the provision of social support for vulnerable families to forestall placement and in helping to reintegrate the children who are already in care or, where this is not possible, fostering and adoption. This work is proceeding apace in many countries in the region, especially in Bulgaria, Moldova and Ukraine to pick only three. And in this work, support from NGOs in western countries where institutional care has been minimised has been and is still vital. Characterisation of the institutions as orphanages does not help this process.
Dr Richard Carter
Former head of research, European Childrens Trust/EveryChild

The tragedy of the young people with disabilities found languishing in Belarusian orphanages is not a revelation. When my colleagues and I travelled there as part of a humanitarian team in the late 1990s, we were shocked by what we found and tried to draw attention to the plight of these children and their privations. We wrote reports for the Belarusian government alerting it to the needs of these children being warehoused in large numbers without education, appropriate therapy or personalised care. The visits from overseas volunteers and visitors helped to make the staff at the orphanages more aware of what should be available to these children. When my childrens organisation, Norwood, offered to develop an alternative model for children with learning disabilities in Minsk, based on special education, individualised care and the inclusion of parents, the authorities jumped at the opportunity. They provided a building for the purpose and later on used it as a centre of excellence for training teachers and carers in the field of learning disabilities for the future. In 2011 the Minsk department took over the running of the project, including its funding.

It is to their credit that the Belarusian authorities acknowledged the need to provide children with learning disabilities with education and quality care. However, it remains shameful that they have not also found the resources and determination to build upon this and close all the remaining orphanages. The young people residing there desperately need dignified care and education, having lived in the most appalling conditions in state-run institutions for most of their life.

The Belarusian government must now pledge that no child or young person with a disability shall remain in an orphanage and that the resources will be made available to move every one of them into appropriate accommodation that provides them with care plans and education to equip them for life as citizens of a civilised country.
Norma Brier
Pinner, Middlesex

Readers will have been appalled and distressed by your article on Belarusian children. The situation was compared to Romania in the early 1990s when children were kept in filthy conditions with minimal food and care. But while improvements can certainly be made in their care, most of these stick-thin Belarusian children are suffering from genetic disorders that severely affect their muscles and their ability to put on weight, despite the best efforts of their carers.

As director of Chernobyl Childrens Project , I have been regularly visiting Belarus for more than 20 years and have spent much time in orphanages. We are also involved in the spread of palliative care around the country. Our hospice team in Gomel have in their care children whose limbs are also like toothpicks covered with skin and they have loving parents and the best care possible.

Feeding through a gastro tube is relatively new in Belarus. In the past couple of years we have taken many sets out to fit to children in baby homes or living in families in the care of the hospice. Without such a feeding system it is difficult to provide adequate nutrition for these very poorly children.

Cherven orphanage, which is mentioned in the article, has just established a palliative department. This means that a higher level of medical care will be given to these children, and an Irish charity has just taken them gastro feeding sets.

26 April will be the 31st anniversary of the Chernobyl accident. And last year the UN decided to make this an official Day of Remembrance of the Chernobyl Disaster.

As the years go by, the health problems do not recede. The number of children born with genetic disorders continues to increase, and although more families are keeping their disabled children at home than was common in the past, it is inevitable that many of these children will live in institutions.

Chernobyl charities are working with the authorities in Belarus to move towards a society where children with disabilities are generally kept by their parents, with the state providing the support they need; and those children with the greatest disabilities and health problems are given the palliative care that will make the most of their limited lives.

Much has changed in Belarus over the last 20 years. As the United Nations has recognised, it is important that people remember those living in the shadow of Chernobyl and continue to support them to help build a better future.
Linda Walker
Executive director, Chernobyl Childrens Project UK