Human rights of children with intellectual disabilities: comparing self-ratings and proxy ratings

A child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children's own views about aspects that concern them. The aim of this study is to compare children with intellectual disability's own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow's hierarchy of needs.

This study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children's Rights Questionnaire (CRQ) developed by the researchers based on the United Nation's CRC. We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way.

Questions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly.

The results underscore the importance of promoting children's rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters - not only the latter. The results indicate that it is especially important to include children's own voices when more complex needs are surveyed. Agreement between self- and proxy ratings could be affected by socio-economic circumstances.