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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]

Background: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff.Methods: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability.Results: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'.Discussion: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting. [ABSTRACT FROM AUTHOR]

Purpose – While ageing with an intellectual (learning) disability has been subject to increased research in recent years, there remains little knowledge regarding the daily practice issues that disability workers struggle most to support in this cohort. The purpose of this paper is to gain feedback directly from staff regarding the problems they experience in daily work, and to evaluate whether any changes to legislation or practice could potentially alleviate identified areas of concern. Design/methodology/approach – A Delphi project was conducted over three rounds with participants from rural areas of New South Wales (NSW). The panel was composed of support workers who assist people ageing with a learning disability. Participants were asked their perceptions of the main practice issues facing them while they provide support. Findings – The panel identified 29 issues that were considered problematic in the provision of support to people ageing with a learning disability. A thematic analysis indicated three main themes of access to services; time constraints; and funding. Research limitations/implications – The participants in this study were all disability workers employed by non-government organisations in rural NSW, and as such, many of the issues identified may be specific to this population cohort and geographic setting. Any generalisation of these results to other locations or populations must be considered within these limitations. Originality/value – Identification of the issues facing disability staff may facilitate government, health care providers and disability organisations to proactively plan to address current and future problem areas. The consequent effect of improving practices can assist individuals to receive better support and lead to a corresponding improvement in their quality of life. The current implementation of the National Disability Insurance Scheme in Australia is an ideal opportunity for cross-sectoral collaboration to change practice to facilitate better support for a highly vulnerable group of the community. [ABSTRACT FROM AUTHOR]