ABSTRACT
The life expectancy for people with intellectual disabilities is increasing (Bigby, 1998: 2000). Parental caregivers can now anticipate caring careers that extend for decades beyond their expectation at the birth of their child (Cairns, Tolson, Brown, and Darbyshire, 2013). In Australia from 2014-2015, around 2 in 3 people with disability (65%) had an informal carer, most often their mother (72%), and for the majority (84%), their informal carer was their primary carer (Australian Institute of Health and Welfare, 2016). In both developed and developing countries, the majority of people with an intellectual disability are therefore primarily cared for within the family home (McKenzie, 2016). For a large proportion of people with intellectual disability a mid-life transition to out-of-home and post-parental care is anticipated to occur when older parents are no longer able to continue primary care (Bigby, 2000). In rural areas, however, there is a spatial distribution and paucity of specialist disability services and research findings suggest substantial unmet need for residential disability support and particular issues and challenges for social service providers in rural community care (Bryant and Garnham, 2016; Eley, Boyes, Young, and Hegney, 2009a; Hussain et al., 2013; Walker and Ward, 2013; Wark, Hussain, and Edwards, 2014). For rural families then, the mid-life transition to post-parental care often occurs as a ‘crisis’, occasioned by the death or incapacity of older parental caregivers and the absence of a clear pre-planned pathway to alternative residential care arrangements (Bigby, 2008; Bigby, Ozanne, and Gordon, 2002). The ‘crisis’ transition can produce negative outcomes for people with intellectual disabilities resulting from abrupt dislocation without transition support or the opportunity to develop adequate skills in independent living, inappropriate or unstable residential placements, significant geographical dislocation from social supports and familiar environments and the failure of care systems to attend to issues of grief and bereavement (Bibby, 2013; Bigby, 2000).
