REPORT on activities carried of NGO “BelAPDIiMI”

January 2011

1. Suggestions for the Law “About psychiatric support to population” and for the Marriage and Family Code were prepared and given to the Committee for problems of people with disabilities under the Belarusian Parliament. The suggestions of the NGO “BelAPDIiMI” touch upon changes in the legislation in respect of children with mental disabilities. This category of children and young people hasn’t been included into a separate group. They are still considered as psychically disabled people.

2. Specialists in social work prepared and published a brochure about placing children with mental disabilities (from children’s home for children with psychophysical disabilities) in guest families. The brochure (+ presentation about work carried out in this direction) was distributed among all children’s homes in Belarus.

3. On January 28th, 2011 the Committee on labour, employment and social protection of the Minsk city executive committee rewarded 6 the most active chairpersons of member organizations of Minsk city organization of the NGO “BelAPDIiMI” with honorary diplomas for long-term work and great contribution to development and strengthening of social policy of the Republic of Belarus.

4. Work of the group on neuromuscular diseases

In September 2010 a group of parents who look after children with hereditary neuromuscular diseases was organized on the basis of the NGO “BelAPDIiMI”. Elena Boiko, specialist in social work of the NGO “BelAPDIiMI”, became a leader of this group.

At the moment this group is the only one of its kind in the country. It unites members of families who look after children and young people with neuromuscular diseases. Most of these families are isolated, they are in so-called information vacuum, they lack for necessary information about disease of their child, about possibilities of diagnostics and treatment, about support which can be rendered by other parents and specialists.

The aim of the group on neuromuscular diseases is to attract the attention of the society to the problems of families who look after children with neuromuscular diseases, to search together for ways of solving these problems.

Every family has its own unique story.

Sasha’s parents told:

“In July 2008 Sashenka Khabarov(affectionate diminutive of Sasha) was born. He was absolutely healthy, strong and cheerful. The day of his birth was the happiest day of our life. When a Baby was 1 month, a terrible disease was diagnosed: spinal atrophy (Werdnig-Hoffman). There is no cure for this disease in the whole world. This disease results in atrophying of muscles.

When the Baby was 6 months, he had to use an apparatus of artificial lung ventilation. It was then when we started fundraising with the aim to buy this apparatus and take the Baby home! Sashka has been using the apparatus of artificial lung ventilation during 2 years, 1,5 years he has been living at home!”

Sashka is the first baby in Belarus who uses the apparatus of artificial lung ventilation and lives with parents at home. It became possible thanks to not indifferent people who helped to collect money for necessary equipment. But most children who can’t breathe on their own have to spend many years in hospitals, they can’t get home, even for one hour, they can’t see their mother and father without medical doctor coat.

Creation and work of the group on neuromuscular disease enabled parents to unite and to lobby jointly the interests of their children.

In January 2011 members of the group cooperated with doctors from the republican centres, a letter about development of new medical services for children with neuromuscular diseases was prepared for the Ministry of healthcare of the Republic of Belarus. New materials about this disease were put on the website of our organization. Members of the group were discussing the possibility of publication of informational booklets for specialists and parents, possible themes of such booklets.

A father told:

The Russian and European experience shows that everything is done by parents, because parents need it most of all. If we, parents, give up and don’t constantly remind doctors and the state about us, about our problems and about our children who have to live better, then no one will help us. And I call to all parents: let’s unite, let’s do something. No one except for us will help our children. Our children have neuromuscular disease and we have no time. I, as a father, want to give my child a hope for something better.

The NGO “BelAPDIiMI” support us and I hope very much that our doctors, our state and foreign specialists will joint them”.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.