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Background: Historically the voices of people with intellectual disability have been occluded by barriers imposed by research practice. More recently, adaptive research approaches have been proposed to enhance the inclusion of people with intellectual disability in qualitative research. Method: This article presents an adaptive interviewing approach employed with five people ageing with intellectual disabilities in rural South Australia. The interviews were conducted within a broader participatory action research project in which tools and resources were co-designed for post-parental care planning. Results: We describe our adaptive interviewing approach incorporating multiple methods: (i) responsive communication techniques; (ii) the inclusion and support of family carers; (iii) visual tools; (iv) walking interviews. Conclusion: Findings contribute knowledge about how an adaptive interview approach supports the participation of people with an intellectual disability in qualitative research.

Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age = 60]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.

Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Background: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. Methods: Mixed-methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in-depth interviews; and survey of health professionals. Results: There is an urgent need to develop inter-sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well-being indicators; development and adoption of nationally consistent policies/standards across integrated aged- and disability-care sectors; improved strategies for workforce planning; and upskilling of existing staff including place-based collaboration. Conclusions: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person-centred support systems.

Background: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+. Methods: A cross-sectional survey was used with community-dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi-prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. Results: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). Conclusions: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.

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.

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

Background: This descriptive single-case study reports upon a four-decade history of health care and support provided to one male with life-long intellectual disability and significant comorbidities. Methods: All available paper and electronic documentation from the past 40 years was reviewed, with relevant health and medication information collated and summarised. Results: The collated information notes radical movement in mental health diagnoses and significant emerging physical health issues. There are disparate and sometimes contradictory mental and physical health diagnoses from age 2 years and significant changes in treatment. Conclusions: This case outlines a number of important issues for medical and health care practitioners to consider when supporting individuals with intellectual disability. Clear differentiation between an existing intellectual disability, autism, and emerging mental health concerns has remained problematic over many decades. The lack of effective pain management, when contrasted against comprehensive medication regimes for health issues, is particularly concerning.

Background: Residing in a rural location is associated with socioeconomic disadvantage and reduced access to essential services such as housing, education, transport and healthcare. However, it is not clear whether researchers consistently consider geographic impact for people with intellectual disability. Method: All research articles since January 2000 in the "Journal of Intellectual & Developmental Disability" were reviewed to determine the geographic location of the study participants. Results: In approximately 50% of the 428 studies reviewed it was not possible to accurately determine participants' geographic location, or in some cases even the country in which the research was conducted. Only 6% of papers either focused on rural participants, or compared rural participants against metropolitan peers. Conclusions: Little attention has been paid to geographic location in the sampled intellectual disability literature. This failure to consider geographic disadvantage potentially limits the applicability of such research findings to a significant proportion of the community.

Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods: Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. Results: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of "isolation," "support from doctors," "general health support access" and "internal staffing issues." Conclusions: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

There is little research comparatively assessing prevalence of pain between older people either with or without intellectual disability. This paper explores health and social factors associated with chronic pain in these two groups. A cross-sectional survey was undertaken in New South Wales and Queensland, Australia. Inclusion criteria were adults either with or without intellectual disability, aged 60 years and older, and currently living in community-settings. Univariate and multivariable analyses were undertaken on a sample of 391 adults with intellectual disability and 920 adults without intellectual disability. Key findings included higher prevalence of pain in the intellectual disability group, along with higher rates of osteoarthritis, falls, oral health problems, and mood disorders. Mitigating risk factors for conditions that cause chronic pain in older adults is crucial. As longevity increases, the healthcare sector needs to prioritise chronic pain management for people with intellectual disabilities through appropriate treatment strategies. [ABSTRACT FROM AUTHOR]

Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. Materials and Methods: This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. Results: It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs.

The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either ageing or requiring palliative care. The project took place from June to August 2013 and involved face-to-face interviews and site visits with key academics, government representatives, and community providers in Los Angeles, Chicago, New York, New Jersey, Dublin, Edinburgh, London, Oxford, Cambridge, Bath, Bristol, Birmingham, and Stoke-on-Trent. A priority was placed upon examining how the key features of leading practice models could be implemented within the Australian environment featuring a National Disability Insurance Scheme (NDIS). On the basis of the observations of practice, key points are discussed regarding the potential for improvements to the support of people with intellectual disability within the Australian context of the NDIS.

The past century has seen a dramatic improvement in the life expectancy of people with Down syndrome. However, research has shown that individuals with Down syndrome now have an increased likelihood of early onset dementia. They are more likely than their mainstream peers to experience other significant co-morbidities including mental health issues such as depression. This case study reports a phenomenon in which three individuals with Down syndrome and dementia are described as experiencing a rebound in their functioning after a clear and sustained period of decline. It is hypothesized that this phenomenon is not actually a reversal of the expected dementia trajectory but is an undiagnosed depression exaggerating the true level of functional decline associated with the dementia. The proactive identification and treatment of depressive symptoms may therefore increase the quality of life of some people with Down syndrome and dementia.