Abstract: Children may be born with a disability or may acquire one through accident or illness. Approximately 7% of all children or young people aged 0 to 19 years in Australia are estimated to have a disability. Understanding the needs of families with a child with disability informs policy development, particularly during the rollout of the National Disability Insurance Scheme.
This PhD research project uses both quantitative and qualitative data to understand differences associated with child disability and why some families cope better than others. Population data is drawn from the Survey of Disability, Ageing and Carers and the Australian Census of Population and Housing. The lived experience of child disability is explored through in-depth interviews with parents of children with disability across different states and territories in Australia.
At a population level, children with disability are twice as likely to live in a one-parent family type compared to children with no disability. Consistent evidence of economic disadvantage is associated with child disability for both two-parent and one-parent family types, resulting from lower rates of workforce participation and disability support costs. Families with child disability are more likely to live in areas of economic disadvantage and less likely to live in areas of economic advantage compared to families with no child disability.
Evidence from the qualitative research indicates that child disability care needs are often intensive and stressful. The need to provide care disrupts social relationships within the family and with other people. Intensive contact with medical, therapy and disability systems distorts the public/private boundary, changing the family's position within the social ecology.
Families coping well with child disability utilized their skills, resources, or networks to overcome the challenges of the situation. Families not coping well had insufficient skills, resources, or networks to meet the level of demand. Dysfunctional relationships within the immediate or extended family also undermined coping.
Annemarie Ashton-Wyatt is a PhD Candidate in the School of Demography.