Promoting the rights of Children with disabilities innocenti digest no

institutionalization and lack of appropriate care
Four decades of work to improve the living 
conditions of children with disabilities in 
institutions have taught us one major lesson: there 
is no such thing as a good institution.
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(Professor Gunnar Dybwad, founding father of the 
movement for inclusion, parent advocacy and self-
advocacy for persons with disabilities)
Placement of children in institutional care remains a 
common response to disability in some parts of the 
world. The ability of parents or caregivers to cope 
with a child with a disability may be compromised 
for different reasons. They may, for example, find 
themselves isolated in a community that does not 
understand their child’s impairment; and they may 
lack the needed economic and social support, or the 
required information, to be able to provide the needed 
care and assistance for their children.
However, it has become widely accepted that 
institutional care for children whose needs cannot be 
met within their own family is highly detrimental to 
their well-being and development. Institutionalization 
often means that children are cut off from their 
families and the life in their communities. Research 
has demonstrated that children experience 
developmental delays and potentially irreversible 
psychological damage by growing up in such 

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Innocenti Digest No. 13
Promoting the Rights of Children with Disabilities
environments. Even in a well-staffed institution, a 
child rarely gets the amount of attention he or she 
would receive from their own parents and families, or 
from substitute caregiver families in the community.
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In addition, children in these settings are denied the 
important benefit of modelling by other children, 
which is critical for learning.
Under the CRC, children, including children with 
disabilities, have the right to be cared for by their 
parents (article 7) and not be separated from their 
parents unless a competent authority determines 
this to be in the child’s best interests (article 9). In 
this regard, there is little evidence to suggest that the 
best interests of a child with a disability are promoted 
through segregated structures or facilities rather than 
in an inclusive society in which all children are able to 
experience and benefit from diversity. 
This is reinforced by the CRPD (article 23), which 
requires: “States parties shall undertake that where 
the immediate family is unable to care for a child with 
disabilities, to take every effort to provide alternative 
care within the wider family, and, failing that, within 
the community in a family setting.”
Furthermore, article 25 of the CRC states: “when 
a child has been placed for the purposes of care or 
treatment, she/he has a right to a periodic review 
of treatment provided and all other circumstances 
relevant to the child’s placement.” The available 
evidence suggests, however, that such reviews rarely 
take place.
Once institutionalized, adolescents and young 
persons with disabilities are also at increased risk of 
neglect, social isolation and abuse. The World Report 
on Violence against Children, for example, presents 
evidence on the incidence of violence in relation to 
the provision of care, including by institutional staff; 
violence represented by a lack of care; and bullying 
and physical violence by other children.
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In almost all countries in Central and Eastern Europe 
and the Baltic States, the number of children in 
public care increased after transition. The number 
of children with disabilities living in institutions rose 
rapidly during the early transition years, doubling and 
trebling their numbers over a short period. At the 
end of the 1990s, close to 1 million children (about 
1 per cent of all children) were reported to be living 
in institutions in the 27 countries of the CEE/CIS 
and Baltic States, including 317,000 children with 
disabilities.
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Medical conditions such as epilepsy, 
cleft palate and scoliosis are sometimes considered 
sufficient reason for the unnecessary placement of 
children in a long-term residential facility.
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A variety 
of reasons are given to justify such institutionalization: 
professionals may insist that institutions will provide 
the most effective care; there is a lack of support 
for families to allow them to care for these children 
at home; few services and supports exist in the 
community to help parents address the needs of 
these children. Combined, these factors often result 
in parents having little option but to assign their 
children to residential care. 
Trends like these were seen in the Russian 
Federation, where economic hardship following the 
transition contributed greatly to problems faced by 
children with disabilities and their families. With 
fewer resources available to them in the community, 
more and more parents were forced to place children 
in institutions; in turn, the budgets of the institutions, 
already stretched, were required to cover the costs 
of an increased number of children.
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In 2002 more 
than 200,000 children were living in 1,439 boarding 
schools (