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ItemWhen parents relinquish care: planning, transitions and sources of support for middle-aged and older adults with intellectual disabilityBigby, Christine ( 1996)Informal support, primarily from parents, is central to the provision of care for adults with intellectual disability who remain at home with ageing parents. Formal services often play a secondary role and many of these families are not in touch with specialist service systems. Because of increasing longevity, adults with intellectual disability are likely to outlive their parents and thus, in middle-age, lose their primary caregivers. Families and service systems confront the task of planning for transition and the substitution for parental care. As these adults are usually spouseless and childless their closest family will be siblings or more distant relatives. Parents often have high expectations of future roles of such kin, although in the general community those in these relationships do not normally fulfill extensive caring roles. Existing research suggests that older people with intellectual disability have limited informal support and a high demand for formal services. However, the nature of support in the post parental care phase has not been fully explored. Studies have not differentiated people with a history of institutionalisation from those with family care backgrounds and have often excluded people unknown to specialist services. This study investigated this unmapped phase in the lives of one group of people with intellectual disability. The study exan1ined the processes of planning and transition from parental care and the intersection of formal and informal sources of later life support for adults with intellectual disability who remained in parental care until mid-life. An understanding of informal support to this group was placed in a broad context by drawing on empirical and theoretical literature from social gerontology and social work whilst sources of formal support were considered in the context of Australian Aged Care and Disability Policies. Qualitative methodology was used. The sample was generated using an area-based case finding strategy and comprised 62 people with intellectual disability aged 55 years or over who had left the care of their parents after the age of 40. Data about parental plans and their sources of support, both currently and since they had left parental care, were gathered through in-depth interviews with multiple informants. Most comn10nly, parental planning was informally based, relying on the nomination of informal successors to oversee well-being. Parental expectations were fulfilled and, for most, the transition to non parental care was an informally managed process with minimal reliance on formal services. Informal support continued to play a significant, though different, role in the post parental care phase. Parental functions were split between informal supports, which oversaw well-being, and formal care that provided primary care. Informally based plans were more successful, over the long term, in ensuring security than more concrete residential plans. Parents successfully established a 111echanism, in a key informal network member, who could manage unforeseen contingences and organise formal services. Although formal support, particularly generic aged services, were used extensively it could not adequately replicate informal functions. The post parental care phase was characterised by significant change and a vulnerability to control by others, shrinkage of informal networks and residential mobility. Disability services became more inaccessible as people grew older and generic aged services were sometimes considered inappropriate. Mismatches between the thrusts of Aged Care services and Disability services, and differing perceptions of II older" resulted in neither system being responsive to the needs of middle-aged and older people with intellectual disability. Recognition and nurturance of social networks and a pro-active policy of collaboration between Specialist Disability and Aged Care service systems are suggested to address Some of the later life vulnerabilities of older people with intellectual disability.