The Bulgarian prosecutor launched a homicide investigation in September into the deaths of 238 children with disabilities who had been living in state institutions in Bulgaria. The children died over the past decade from malnutrition and starvation, treatable infections, pneumonia, “accidents” and neglect. Of the 238 cases, 149 children died in the institutions where they lived rather than in a hospital, raising alarm about why, on the brink of death, a child was not transferred immediately to a hospital intensive care unit.
Abuse and neglect are not unique to Bulgaria. Successive governments across central and eastern Europe are responsible for a systemic failure to provide adequate support to families with disabled children, often resulting in abandonment and institutionalization. Without a stimulating family or family-like setting, such children cannot develop to their full potential. Institutions cause deterioration in a child, even where neglect and abuse are absent.
The rate of institutionalizing of children with disabilities has remained stable, but is set to be reversed. Last month, representatives from the WHO’s Europe members met in Bucharest, where they signed the “European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families.” The declaration commits governments to improving the healthcare of children with intellectual disabilities to enhance lifelong development, as well as inclusion and full participation in society, and sets out 10 priorities for action, which include empowering children, protecting them against harm and abuse and transferring care from institutions to the community.
This is the first intergovernmental agreement to incorporate the 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), a legally binding human rights treaty. The declaration applies the CRPD in a specific geographic region (Europe), for a specific target group (children with intellectual disabilities) and for a cluster of specific rights (the rights to health and to live in the community with appropriate support). There are 53 states in the WHO-Europe region, which stretches from Iceland to Uzbekistan, and 48 have signed or ratified the CRPD.
Children with intellectual -disabilities often experience syndrome--specific risks, sensory or physical impairments and other health issues, including epilepsy, heart disease and respiratory disease. Frequently, these conditions are not diagnosed, or are diagnosed late as a result of healthcare professionals’ ignorance of what to look for, or their inability to communicate with non-verbal people.
Head banging or screaming can, for example, be misinterpreted as being part of the intellectual disability rather than an expression of discomfort or depression — a phenomenon known as “diagnostic overshadowing.” Unfortunately, annual health checks that screen for physical and mental-health changes and epilepsy are not routine in many countries.
There is no effective training for healthcare and social welfare professionals that covers the special health needs of people with intellectual disabilities and no monitoring of health systems. People with intellectual disabilities are under-researched, their physical and mental health problems unarticulated and unidentified — and thus their special needs left unaddressed.