You may have read recent articles in The Guardian or MailOnline about the distressing plight of disabled children in orphanages in Belarus.
The pattern of care provided for Belarusian children with chronic or terminal illnesses such as cerebral palsy is patchy. Belarus inherited the Soviet system of caring for severely disabled children in institutions often known as orphanages. Under this system, parents of chronically ill or disabled children are positively encouraged to give up their child into state care, often at birth. Sadly, these children with severe medical problems and disabilities are frequently labelled as having ‘no potential’ and receive little more than very basic care.
The quality of these institutions varies and depends on the director who seems able to allow or restrict access to visitors from outside. There are some very caring and well-meaning people working at the orphanages but, given drastic underfunding and understaffing, many of them can barely manage to complete essential care let alone give individual attention to their young charges with such complex needs. Belarusian Children's Hospice paediatrician Dr Pavel Burykin quotes the example of one of the orphanages he visited with 260 children and only 2 staff on night duty at any one time. Pavel is working on a project funded by a UK based NGO on how to expand paediatric palliative care and related services for children with severe disabilities and life-limiting conditions in Belarus. It also aims to protect and promote the rights of these children and their families