Holding a Vision: An Investgation of a Rights-Based Social Supports Infrastructure for Children/Young Persons with an Intellectual Disability in Ireland
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The overall aim of the research was to assess the realities of the current social supports infrastructure as it applies children/young persons with an intellectual disability against the components of a rights paradigm. A case study approach was used to gather the data necessary to address the overall aim and related objectives of the study. The research target group were children/young persons who have been assessed as having an intellectual disability and, as a result, are in receipt of additional services and supports from the State. The thesis took as its starting point the fact that people with an intellectual disability are widely regarded as one of the most marginalised groups in society. While there has been a significant increase in the knowledge base, research literature, and targeted policies in the areas of both rights and social support, the linkages between the two discourses have not been well developed, particularly in relation to children/young persons with an intellectual disability. This study aimed to address this gap by providing an insight into the social realities of this group of children/young persons from a rights perspective. Two theoretical areas were examined in detail - a rights approach and social support. The research puts forward a rights paradigm consisting of seven inter-related components - social inclusion, recognition, agency, voice, capabilities, equality and self-realisation - which are applied to the social supports infrastructure. The social supports infrastructure considered and analysed in the study is that reported by of a sample of parents/guardians, a sample of young persons with an intellectual disability and a sample of professional service delivery personnel consulted during the research. The study findings show that the social support infrastructure was perceived by study participants as exhibiting some aspects which can be said to reflect a rights paradigm. However, it was found to fall short on a number of important dimensions. On the one hand, social attitudes were generally regarded as positive and inclusive while, on the other, separatist service provision and an absence of a clear social infrastructure to integrate children/young persons with an intellectual disability into mainstream society maintain, and may even reinforce, a form of exclusion. Limited goal-setting, few progression options for those with an intellectual disability after second level education and only limited outlets for expression and creative social engagement emerged as significant deficits. The study demonstrates that there is a clear mismatch between the rhetoric of the rights of children/young persons with an intellectual disability and the reality as experienced. There continues to be in place a set of institutional, cultural, legal and administrative processes which run counter to the underlying ethos of a rights paradigm and the development of a social supports infrastructure accordingly. The research points to the need to develop a new narrative which would reflect and create a stronger context for developing and embedding a rights-based social supports infrastructure for children/young persons with an intellectual disability in Ireland. Seven areas for further research relating to this narrative were identified.