The economics of childhood disabilities in Ireland with a particular focus on using mixed methods to examine the economics of child and adolescent autism spectrum disorders

Abstract

Increased rates in the diagnosis of autism spectrum disorders (ASDs) has led to escalating demands for services across a number of sectors including health, social care, education and social welfare etc. In Ireland, the prevalence has been estimated at 1 in 65, with an estimated 234,000 immediate family members further directly affected by the challenges arising from autism within the family. A substantial economic impact is associated with this life-long condition, with previous research showing the majority of State expenditure occurs in adulthood due to the need for varying levels of assisted care provisions, institutional care costs, and high unemployment rates (80%) among adults on the spectrum etc. The paucity of services provided for children means little is known about either the magnitude or distribution of the impact related to children and adolescents in Ireland. Within this context, the principal research objective of this thesis is to measure and explicate the economic impact experienced by families including the unmet needs of children and adolescents with an ASD in Ireland. The thesis sets out to provide background evidence on the income and conversion handicaps (i.e. poverty arising from the need to divert income to overcoming issues presented by disability) experienced by families caring for a child with a chronic illness/disability using The Growing Up in Ireland dataset for nine year olds (2007-2008). A standard of living model is utilised to calculate a monetary amount for the extra cost of disability incurred based on the severity of the child’s condition. The results support the hypothesis that families caring for a child with a chronic illness/disability incur both income and conversion handicaps, which makes them more vulnerable to experiencing financial hardship. This is followed by a concurrent convergent mixed methods study which has its philosophical underpinnings rooted in a pragmatic approach. A comprehensive national survey which was specifically undertaken for this thesis was conducted on 195 families with 222 children and adolescents with an ASD aged between 2 to 18 years of age. The quantitative empirical analysis consists of a societal cost of illness study, followed by GLM modelling to examine the factors associated with family out-of-pocket expenditure and State healthcare expenditure. In addition, the factors associated with unmet needs and family debt are explored using probit models. The findings show that there is a significant economic impact associated with ASD among children and adolescents in Ireland, and that a considerable proportion of this is borne directly by parents rather than the state. The results suggest that parents are central to meeting the needs of young people with autism spectrum disorders in Ireland. Families that had two or more children with an ASD were more likely to report unmet needs and their family going into debt as a direct result of the child’s condition. To understand the quantitative analysis in greater depth, a qualitative analysis using a framework analysis approach is implemented. This allows both deductive and inductive research questions to be explored in the qualitative data. The findings support the quantitative results by exploring the experiences of families bearing the economic impact of child and adolescent ASDs. Furthermore, it provides explanations and insights from parents into the substantial impact borne by identifying master themes – that include direct costs, indirect costs, unmet needs, family debt and the intangible costs. Direct quotes from the parents are provided in relation to the subthemes within each master theme to explain their experiences. The main contribution of this thesis is to address the information gap that exists in relation to the economic impact of child chronic illness/disability and child and adolescent autism spectrum disorders in Ireland.