Planning post-parental care transitions for people ageing with intellectual disabilities in rural South Australia

Abstract

<p>People with intellectual disability are a diverse population with varied experiences and support needs for activities of daily living. Contemporary knowledge about intellectual disability care has been produced primarily through an urban-centric lens with a small body of rural research focused on care at the interface of ageing and intellectual disability. This minimal focus on the rural is problematic as there is little knowledge on how rural communities practice care and receive support from informal and formal community care groups for persons with intellectual disability and their older parental carers as they age. In response, this study focuses on how rural places shape post-parental care transitions for persons with intellectual disability and how rural families and disability service workers can work together to co-design planning resources that can be used across rural places to map pathways to appropriate and desirable post-parental care arrangements.</p> <p>Specifically, the study findings contribute new knowledge associated with ensuring effective inter-sectorial collaboration in the disability, carer support and ageing sectors in rural study sites in South Australia, to aid persons with intellectual disability to transition to post-parental care through safe and appropriate pathways. Through the articulation of pathways, aspirations and identification of gaps in social services, this project builds the capacities of persons with intellectual disability and their family carers to both understand and articulate their needs. This is imperative to the successful implementation of the National Disability Insurance Scheme (NDIS), a person-centred disability service system. Whilst the NDIS is intended to provide person-centred planning and care tailored to individual needs and goals through individualised funding, without capacity building and planning the objectives of the NDIS will not be realised for people ageing with intellectual disability and their older carers. Moreover, post-parental planning and subsequent transition is often crises-driven due to the emotional nature of planning future care for adult children, however, limited availability of rural housing and other services exacerbate opportunities for post-parental care planning.</p> <p>In the absence of a coherent collaborative framework across the disability and aged care sectors, this project builds critical cross-sectorial knowledge by mapping pathways and potential pathways for post-parental care. The new knowledge generated by this study is translatable to other rural areas in Australia and can be nuanced for urban centres. The methodology of co-designing resources for planning and identification and mapping of pathways enables immediate translation and uptake in the service sector and end-user sustainability.</p>