Accommodation needs for carers of and adults with intellectual disability in regional Australia: their hopes for and perceptions of the future

Abstract

This article provides an in-depth investigation of the accommodation circumstances of a population of aging adults with intellectual disability living at home with parents or in supported accommodation in an Australian regional centre. Given the ageing of both the carer and adult population with intellectual disability our research explored the accommodation needs and perceptions of future lifestyle issues from the perspective of both the carers and the adults with intellectual disability. This study aimed to describe these accommodation circumstances related to a regional/rural location and did not make direct comparisons with urban/metropolitan situations. A mixed methods approach, specifically an explanatory design, participant selection model was utilised for the overall study. This article reports on the qualitative study consisting of data from both free response open-ended survey questions and semi-structured interviews with selected adults with intellectual disability and their carers. This study explored and described participants' experiences and perceptions regarding their accommodation needs and future lifestyle issues. A purposive sampling technique was used to identify a representative sample of participants for interviews. The interview questions were guided by the results of the quantitative first study phase. Data were analysed by content analysis for major themes emerging from the interview and free response survey data. A total of 146 carers (mean age 61.5 years; range 40-91 years) and 156 adults with intellectual disability (mean age 37.2 years; range 18-79 years) participated in the study. Data saturation was reached after 10 interviews were undertaken with carers (mean age 60 years) and 10 with adults with intellectual disability (no age criteria applied). Six major themes were identified: ageing, family issues, living at home, living away from home, government support and funding, and future needs. The perceptions and views of both adults with intellectual disability and their carers around these major themes are reported and discussed. This study indicates that there is a lack of suitable, available, supported accommodation for people aged 18 years and older with intellectual disability in this Australian regional centre. Consequently, aging parents caring at home have little choice but to continue in their caring role. For those caring away from home, existing services are decreasingly seen as fitting the ideal life they want for the person with intellectual disability for whom they care. The told experiences, perceptions and views of older carers of and adults with intellectual disability have highlighted their increasing vulnerability to the 'disability system'. The findings suggest that government and disability services must acknowledge the changing needs of people with intellectual disability in connection with their advancing age and the urgency of increasing care needs due to the advancing age of their carer's. The overwhelming feeling is that the carer's voice will only be heard when the situation reaches crisis point. For many carers and their families this has already occurred.