Parents with learning disabilities: The lived experience

MacIntyre, Gillian and Stewart, Ailsa (2008) Parents with learning disabilities: The lived experience. In: 8th Seattle Club Conference on Research and People with Learning Disabilities, 2008-12-01 - 2008-12-02. (Unpublished)

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Abstract

Background: In recent years the number of parents with a learning disability has increased, although exact figures are unknown. Research suggests that parents with learning disabilities are often assumed to be incompetent. (Murphy & Feldman, 2002; Booth & Booth, 1996). The result is that these families become over-represented in child protection figures (Olsen & Clarke, 2003). Research has suggested that advocacy plays an important role in assisting parents to negotiate these systems, allowing their voices to be heard more effectively (e.g. Mencap 2007). This small pilot study aimed to identify the likely demand for advocacy services to support parents with a learning disability living in the Glasgow area. In addition the study aimed to illustrate in depth the lived experiences of parents with a learning disability. Methods: A survey questionnaire was sent to relevant social work, health and voluntary sector organizations. Interviews were conducted with five parents with learning disabilities, their advocates and with key informants in service provision. Results: Parents experienced disadvantage in relation to a number of areas including child protection, poor housing and poverty. Interventions to support parents were often provided during a crisis rather than as prevention and a lack of accessible information disempowered parents in a number of ways. Parents often did not meet eligibility thresholds and found it difficult to access support for themselves. Advocacy performed a number of key functions and provided effective outcomes for parents with learning disabilities. Conclusions: Parents were able to effectively identify successful outcomes as a result of advocacy support. The complexity of their situations meant that long-term advocacy was viewed as the most effective model with volunteer advocates undertaking a complimentary role.

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