“It was the hardest and most painful decision of my life!”: seeking permanent out-of-home placement for sons and daughters with intellectual disabilities

Abstract

The issue of out-of-home placement for children with intellectual disabilities continues to receive significant research attention. This focus reflects the fact that some families continue to seek out-of-home placement for their children with intellectual disabilities despite anti-placement philosophy and policy which currently inform disability support services. The present paper explores families' past experiences of seeking out-of-home placement for their relatives in an institutional facility. Data for the study were generated within the context of a longitudinal study on the deinstitutionalisation of a large institutional facility for people with intellectual disabilities. Families were interviewed at regular intervals throughout the resettlement process and were encouraged to talk about their views towards, and experiences of, deinstitutionalisation, and their fears and aspirations regarding the new model of service to be delivered to their relatives. Families' past decision-making regarding out-of-home placement was also explored. One significant finding of this study was a shared story reported by families in terms of their past decisions to seek permanent out-of-home placement in an institutional facility. Critical elements of such decision-making are identified and presented in the context of current research on out-of-home placement.