Policy, plans and pathways: the ‘crisis’ transition to post-parental care for people ageing with intellectual disabilities in rural Australian carescapes

Abstract

ABSTRACTThe concurrent ageing of parental care-givers and people with intellectual disabilities is driving academic and social welfare concern for a post-parental care ‘crisis’. The ‘crisis’ typically pertains to a transition from primary care in the family home precipitated by the death or incapacity of older parents without a pre-planned pathway to post-parental care. This crisis is amplified in rural communities given low service engagement with families and a deficit of disability-supported accommodation and services. Academics, service providers and policy makers have responded through a problematisation of post-parental care planning. This focus continues to normalise informal care, burdens families with responsibility for planning, and diverts attention from structural deficits in the socio-political carescape. This paper attends to the Australian policy landscape in which long-term care-giving for families living with intellectual disability is enmeshed. It contends that the dyadic and didactic model of informal long-term care has profound implications for social service support and post-parental care planning. Problematisation of carers’ ‘need’ to relinquish primary care and for people with intellectual disabilities to transition to independent and supported living is necessary to unsettle the dominant policy and service discourse around the provision of services to sustain informal care-giving. Innovation is then needed to forge pathways of support for families in rural communities planning on continuing, transitioning and transforming care arrangements across the lifespan.