Transferring responsibility: The nature and effectiveness of parental planning for the future of adults with intellectual disability who remain at home until mid-life

Abstract

As the life span of people with intellectual disability increases, many are likely to outlive their parents. Thus, increasingly, major issues facing adults who remain at home with their parents are the replacement of lifelong parental care and their transition from parental care. One strategy has been to encourage parents to plan for the future. Yet research indicates that parents are reluctant to do this and there is little evidence regarding the efficacy of planning. Using qualitative methods, this study examined retrospectively the nature and implementation of plans made by parents of 62 older adults with intellectual disability. Few parents had made comprehensive plans. However, most had made plans that were imprecise and nominated someone to take over responsibility for the well-being of the adult with intellectual disability. These key person succession plans were an effective form of planning; they facilitated transition from parental care, often obviated the need for more detailed formal planning;...