The double bind : ageing and the transition of care for people with disability and their carers from minority migrant communities

![CDATA[An important milestone in social care and social policy since the late 1990s is the recognition that persons with disability and their parents and/or family caregivers have a longer life expectancy. However, as family carers, informal supporters and people with disability age, their needs and expectations also change. Ageing family carers, usually parents, find themselves increasingly unable to provide the same quality and intensity of support for their family members with disability. This puts additional pressure on informal long-term care and support relationships. It also threatens the future of care, especially for ageing carers within culturally and linguistically marginalised communities, who continue to find access to disability and other support services challenging even with the support of advocacy organisations. Given the changing nature of informal caregiving due to ageing, there is a need to understand the lived experiences of ageing multicultural carers and their family members with disability, and how they think about and plan for this critical transition in the latter years of life. This chapter, therefore, aims to outline some of the key issues experienced within multicultural communities with families who have provided lifelong care for a disabled family member in Western Sydney, one of the most diverse geographical areas in Australia. The chapter emerges from a collaborative research project undertaken in partnership with a multicultural disabled people’s organisation embedded within the area. The primary aim of the partnership was to understand the care transition planning experiences within multicultural communities of ageing carers and their adult family members with disability so that support tools could be developed in response to their specific needs.]]