Introduction

In both Australia and England, the needs of families with a sick or disabled child are recognised and addressed in legislation and in national health, care and education systems. Relevant policy frameworks and support measures, which continue to develop and change, have been put in place over several decades (HMT and DES, 2007; Broach et al, 2010) and both countries have made disability discrimination illegal (including in education and social support systems). Each has policies designed to meet the additional educational needs of children with a disability, and offers financial support that parent-carers may claim. Yet, in both countries, many parent-carers feel unsupported, their health and financial circumstances are poor compared with those of other parents and carers, and their employment rates are low (Audit Commission, 2003; Burchardt, 2006; Yeandle et al, 2007; FaHCSIA, 2008).

What help do parent-carers get in these countries to enable them to reconcile work and care? Why are outcomes for them so often unsatisfactory? Is policy adaptation and change addressing these problems? This chapter begins by outlining the context for these issues, focusing first on the prevalence of sickness and disability among children in Australia and England and the services and support available to their families.

Prevalence of disability among children and their families’ financial circumstances

In Australia in 2009, an estimated 288,300 children aged 0–14 had a disability: over 3% of 0–4 year olds, and almost 9% of 5–14 year olds (ABS, 2011). Of these, 166,700 had a severe or profound ‘core activity limitation’, meaning that they need assistance with regular communication, mobility or self-care tasks (AIHW, 2009a; ABS, 2011). Estimates suggest that about half of all disabled children aged 0–14 have two or more disabilities and that almost 7% have four or five (AIHW, 2009b). The type of disability a child has can be important to his or her care needs. A review of payments to primary parent-carers in Australia found intellectual and learning disabilities (4.3% of all children) and physical/diverse disabilities (4.2%) to be most prevalent (FaHCSIA, 2007: 4), while analysis of the primary disability of service users found that this was ‘intellectual’ for about 30% of people, ‘physical’ for almost 17% and ‘autism’ for about 6% (SCRGSP, 2011: Table 14A.13).