Today, on the International Children's Day, we would like to tell you about our partnership with the Belarusian Children's Hospice and its international and Belarusian colleagues in protecting the rights of seriously ill children.
The project “Building effective advocacy mechanisms to better protect the rights of most vulnerable children with severe disabilities and life-limiting conditions in Belarus” is implemented with the funds of the European Union by the Belarusian Children’s Hospice in partnership with HealthProm (UK) and local partners – the Mahilioŭ Regional Branch of the Belarusian Children’s Fund and the RANA Republican Nongovernmental Association of Parents with Prematurely Born Children.
The partners provide comprehensive support to families raising children with disabilities, they arrange training for parents and specialists of polyclinics, correctional and rehabilitation centers, and children's residential care institutions.
Over the two project years, the Belarusian Children's Hospice staff have helped more than 1,800 children with disabilities and their families to realize their rights to social, medical and labour benefits, a barrier-free environment, inclusive education, recreation and leisure, as well as full participation in society. Thus, owing to the efforts of the hospice regional caseworkers and the project legal advisor, a disabled child’s family from Mahilioŭ Region received municipal housing that they had been waiting for 12 years. In Viciebsk Region, children received new free special footwear that was not available in provinces. In Minsk Region, specialists helped a family to receive a disabled child care allowance; in Hrodna, they helped to provide a child with suitable tracheostomies. At the parents’ request, the hospice arranges meetings with physical therapists, psychologists, speech therapists and other specialists who help to solve individual problems of the families and substantially improve their quality of life.
RANA Association of Parents with Prematurely Born Children provides social and legal follow-up support to families that have premature babies born with an increased risk of early-age disability. Under the project, the association has helped more than 1,700 families including social and legal follow-up support to 40 families, 5 of which are raising babies weighing less than 500 grams at birth, doing everything possible for their rehabilitation and recovery. RANA Association structures its activities in line with the European early intervention standards, as a member of the European Foundation for the Care of Newborn Infants (EFCNI).
The goal of the team of the Mahilioŭ Regional Branch of the Belarusian Children’s Fund under the project is to promote the parents’ engagement in advocacy of the rights and best interests of their severely ill children, and to develop the parents’ initiatives. The team has established the New Horizons parent community which is already bringing together more than 80 families that have children with severe disability. The project also involves Yest Delo charitable organization helping children with severe disability who live in boarding schools. The quality of life of children with severe and multiple developmental disorders directly depends on the the caring adults. As concerns children living in boarding schools, such adults are not their parents, but the stuff of the institutions. Therefore, the project is specially focused on training boarding school personnel.
Please check for updates on www.hospice.by web page and join the important common cause.