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Changing disease patterns and improved life expectancy have resulted in a growing cohort of older Australians with an intellectual disability, with the provision of end-of-life care to this group only recently emerging as a priority area. Particularly in rural settings, where the availability of both specialist and general local services may be limited, end-of-life care support remains under-explored. The current project aimed to specifically examine end-of-life care provision in rural areas, the focus of this article being individual quality-of-life during the end-of-life stage. The study used a focus group interview model with 22 rural disability support workers from either New South Wales or Queensland, who had direct experience in providing end-of-life care. An advisory committee, composed of people with intellectual disabilities, carers, and service providers, offered overall project guidance. Participants elaborated on factors that contributed to quality-of-life during end-of-life care. Verbatim transcripts of the focus groups were thematically analysed by the team, and three thematic categories identified: availability of services; individual needs; and untreated pain. Specifically, participants noted concerns about the unavailability of health services, inflexibility of funding support, artificial government barriers, and a widespread lack of pain relief for individuals. We conclude that end-of-life support people with intellectual disabilities in rural areas has to trade off the ongoing delivery of quality-of-life activities against the increasing need for health care, which itself is subject to accessibility issues, and which is exacerbated by the more general funding challenges seen across all locations with the National Disability Health Insurance implementation. [ABSTRACT FROM AUTHOR]

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 communityThese people are now often between 30 and 50 years oldWe 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 doingWe 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 lifeWe found out the things that make their life good, and also what might stop people enjoying their lifeWe learnt that people with learning disabilities should receive more support to assist them before they retireWe learnt that people with learning disabilities still need more support and choice around who they live with Background: This 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 procedures: A 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. Results: The 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. Conclusions: The 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. [ABSTRACT FROM AUTHOR]