Growing older with lifelong disability: What is “quality of life” in the middle years?

Abstract

Accessible Summary In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large “institutions” and into their own home in their local community These people are now often between 30 and 50 years old We asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doing We asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their life We found out the things that make their life good, and also what might stop people enjoying their life We learnt that people with learning disabilities should receive more support to assist them before they retire We learnt that people with learning disabilities still need more support and choice around who they live with AbstractBackgroundThis study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia.Methods and proceduresA cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents.ResultsThe overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q.ConclusionsThe findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options.