Friday, August 22, 2014
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Ending Institutionalized Childhood

BUDAPEST – In September of this year, the Bulgarian prosecutor launched a homicide investigation 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 their full potential. Institutions cause deterioration in a child, even where neglect and abuse are absent.

The rate of institutionalization of children with disabilities has remained stable, but is set to be reversed. In November, representatives of member states of the World Health Organization’s Europe region 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 health care of children with intellectual disabilities to enhance lifelong development, as well as inclusion and full participation in society, and sets out ten 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 health-care 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 health-care 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.

Despite some efforts by governments in the 1990’s, institutions remain the default official response to children with disabilities and their families across Central and Eastern Europe. In 2005, the last year for which we have statistics, UNICEF estimated that “at least 317,000 children with disabilities in the region live in residential institutions, often for life.” The majority of children in institutions have developmental delay or intellectual disabilities, which institutions themselves can cause or worsen.

Institutionalization is often based on good intentions and carried out in the name of therapy, care, and protection. But children in institutions are denied education, despite evidence showing that every child can learn and develop. They are denied rehabilitation and recreational activities. Many spend their days lying in bed, where they develop major health problems including bedsores, muscle atrophy, spinal deformities, and breathing disorders.

Living in the community with access to both specialized and mainstream services is not merely a policy goal; the CRPD clarifies that this is a matter of fundamental human rights. In tough economic times, there is a tendency to sacrifice human rights, but preventing institutionalization of children or adults with disabilities is no longer open to negotiation.

Lack of resources is no excuse, either. There is money floating around the system that needs to be redirected to community alternatives. Political will is also cost-free, and governments need to introduce management and financial incentives for modernizing services and shifting their focus from institutions to families and community-based care.

Children and adults with disabilities, together with their advocates, should be involved in the planning, implementation, and monitoring of policies and services. Inclusion through support for families and community-based care will ensure that service delivery meets human needs and complies with the rule of law.

Ultimately, it is government’s responsibility to respect, protect, and fulfill human rights. In signing the Bucharest Declaration, governments have committed to stopping new admissions to institutions by developing community-based services. Empirical evidence supports this transition, and international human-rights obligations compel such a move.

States are obliged to report on implementation of the Bucharest Declaration in 2015. For children in institutions, five years is a long time to wait.

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