Despite some efforts by governments in the 1990s, 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 the 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.
Oliver Lewis is executive director of the Mental Disability Advocacy Center, a Budapest-based international human-rights organization.
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