Abstract
This qualitative study explores the experiences of disabled children and their families as they access and use disability support services. It seeks to describe participants' perspectives on ideas about 'family' and 'disability'; to gain an understanding of what these disabled children, their siblings, parents and 'helpers' understand as both informal and formal 'support'; and what for them constitutes a 'good' life. Using a social model understanding of disability, the study also explores the views and experiences of children and families on the barriers they encounter to having a 'good' life.
The study comprised case studies of three children who have an intellectual impairment (Down Syndrome), their siblings, parents and people identified by the families as supporting them in their quest for a 'good' life. Data comprised transcripts from semi-structured interviews with all participants. In addition, each family was given a disposable camera so that the children could record aspects of their lives they considered to be 'ordinary' or 'good'. These photos formed part of the data and allowed the researcher to explore children's perspectives in more depth. Data were analysed to identify emergent themes on disability, a 'good life' and the supports that promote a good life. Findings are reported thematically to preserve anonymity. The study prioritised children's voices and recognised children's rights to express their views on matters affecting them (Alderson, 2000a; United Nations Convention on the Rights of the Child, 1989; United Nations Convention on the Rights of Persons with Disabilities, 2006).
Disability theory, the social model of disability, ecological theory, and theoretical advances in the new sociology of childhood provide a framework for understanding children's and families' experiences as they seek to have a good and ordinary life in the community. The literature on family support is used as a background for understanding how families with disabled children can be supported in ways that capitalise on families' own preferences and strengths. In drawing together ideas about family, disability and a 'good' life, the thesis sets out to identify those features of family and community life, including responsive and supportive services that enhance the capacity of families to live a 'good' life.
The findings of this study suggest that disabled children and their siblings experience life as pragmatic and 'ordinary' and impairment is just part of life. However, their parents are aware of the impacts of a disabling society, although they do not always articulate this view through a social- model perspective. In particular, parents describe challenges as coming from their experiences with the school system. They work hard to mediate these disabling barriers so that their children do experience a 'good' life, and in doing so, they have built relationships with a range of professionals who share their views and support their goals. That these professionals are all from the education sector confirms that this is where families experience the greatest barriers. It also confirms the capacity of particular professionals to assist families to challenge and overcome barriers to a good life.
Features of positive and responsive services that emerge in this study are discussed. These include strong relationships with key people working within services and schools, a social model perspective to providing support and services and a commitment to prioritising statutory obligations, including a strong focus on children's and families' rights.