Date of Award

2017

Document Type

Thesis

Publisher

Edith Cowan University

Degree Name

Master of Social Science

School

School of Arts and Humanities

First Supervisor

Associate Professor Trudi Cooper

Second Supervisor

Dr Vicki Banham

Abstract

As life expectancy increases and mortality rates decrease, Australia is faced with an ageing population. This is particularly true of the population of people living with intellectual disability. Australian research has found that there is an increasing number of ageing parent-carers continuing to provide care for their adult child with an intellectual disability in the family home. Since deinstitutionalisation, many families made the choice to provide care at home, which may become a concern as they age and ask the question “who will care when I am gone?” The purpose of this study was to explore the reasoning behind decisions families made that resulted in them continuing to provide care in the family home, what barriers they experienced, and what plans they had in place for the future accommodation for their adult child with intellectual disability.

A qualitative phenomenological approach was utilised for this study, through a social constructivist worldview. Semi-structured interviews explored the lived experiences of ageing parent carers who continue to care for their adult child with intellectual disability at home. Four families were interviewed for the study. Contrary to the findings of other studies, this study found that the degree of the disability of their adult child and the absence of informal support networks had no bearing on the decision for these families to continue to provide care at home. The families in this study perceived that the care they provide at home was better quality than the care that is provided in accommodation services. This perception was influenced by previous experiences in respite care. In addition to this, even though all of the families interviewed had wills in place, concrete plans for their son or daughter’s future accommodation and care were often vague, or non-existent other than financial bequests.

Recommendations focused on improving the first and subsequent experiences in respite care by implementing strategies to improve the quality of care, perceived or real, provided in disability accommodation. Further recommendations include the introduction of funding to allow for planning sessions for families to navigate the legal system in regards to wills, financial bequests and guardianship. Final recommendations include the introduction of further education for service providers, Local Area Coordinators and NDIS Planners to have a greater knowledge of the challenges families face as they age yet continue to provide care, and to be better equipped to provide the information and resources to plan for the future of their adult child with intellectual disability.

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