Participation of disabled children in individual decisions about their lives and in public decisions about service development

Abstract

A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available. Copyright # 2004 John Wiley & Sons, Ltd. IntroductionThere is growing recognition that children should be involved in decisions about their welfare, and a body of literature has developed about how to put this aspiration into operation (for example, Shier, 2001;O'Quigley, 2000;Matthews, 2001;McNeish and Newman, 2002;Kirby and Bryson, 2002; Cutler and Frost, nd;Craig, 2002;Coombe, 2002). The term 'participation' covers a broad continuum of involvement in decisions. Shier (2001) defines five levels of participation: children are listened to, children are supported to express views, children's views are taken into account, children are involved in decision-making processes, and children share power and responsibility for decision-making. Whilst literature on participation often views higher levels as the ones for which services should be aiming, this assumption has been challenged (for example Lardner, 2001). Thus it is accepted that the level of children's participation will vary depending on the decisions involved and the capability and choice of the child. In this paper, literature on disabled children's participation at all levels will be reviewed. Existing law, government guidance, regulations and policy demonstrate a well established recognition of the need to involve disabled children and their parents in decisions about their care and treatment. The Human Rights Act, 1998, (Article 10) requires central and local government to uphold a right to freedom of expression. The Children Act 1989 requires local authorities to ascertain the wishes of children they look after or are about to look after, and to give these due consideration, subject to practicability, plus the child's age and understanding. The guidance and regulations dealing specifically with disabled children (Department of Health, 1991) make it clear that, if a child has complex needs, communication difficulties or severe learning difficulties, arrangements must be made to establish their views, and that a disabled child cannot be assumed to be incapable of sharing in decision-making.Children's rights to expression and to receiving information are underpinned by Articles 12 and 13 of the United Nations (UN) Convention on the Rights of the Child. While it is arguable that Article 12 is circumscribed by reference to particular attributes of the child, namely their capacity...

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