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Background: Non-communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill-health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid-aged and older-aged people with mild intellectual disability., Method: Comparative data comes from two cross-sectional surveys using similar methodology and timeframes. The analysis sample comprises mid-aged group (30-50 years, N = 291) and older-aged group (≥60 years, N = 391)., Results: People with mild intellectual disability start developing NCDs in early to mid-adulthood and increases with age. The mean number of NCDs in mid-aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67)., Conclusion: There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

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: 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., (© 2021 John Wiley & Sons Ltd.)

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., (© 2020 John Wiley & Sons Ltd.)

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., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

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., (© 2017 John Wiley & Sons Ltd.)

Objective: Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities., Design: A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability., Setting: The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW)., Participants: There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities., Main Outcome Measures: The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities., Results: Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning., Conclusions: When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care., (© 2016 National Rural Health Alliance Inc.)

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three-round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community-based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of 'funding', 'training' and 'access to services'. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community-based placement rather than premature admission to the congregate-care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age., (© 2014 John Wiley & Sons Ltd.)

Background: The issue of ageing within the cohort of people with intellectual disabilities has been an increasing focus for research. However, the training needs of the staff who support them has not been subject of extensive examination., Materials and Methods: A multiround Delphi project was conducted focusing upon the impact ageing issues have on the support provided by disability workers, and what training is required to address the identified areas., Results: Three rounds of the Delphi identified twenty-six separate important issues. A thematic analysis identified five main themes including Generic Training Issues; Medical Issues; Emerging Ageing Issues Requiring Changing Support; Mental Health Issues; and Quality of Life., Conclusions: The study identified a series of training priorities for staff assisting people ageing with an intellectual disability. It would appear possible for many training programmes to be developed and delivered with minimal cost impacts even within rural localities., (© 2014 John Wiley & Sons Ltd.)

Background: Disability research data often exist in the form of individual records located within discrete registers that may extend across sensitive political boundaries., Method: This paper discusses the opportunities and challenges associated with using linked health and administrative data for disability research, with examples from research projects conducted both in Australia and overseas., Results: Linked data offer distinct value in providing a comprehensive profile for a range of health issues, such as morbidity, mortality, assessing health care costs and/or quality of service provision., Conclusions: While the use of record linkage in health research is not a novel concept, recent advances in technology and electronic data management plus improved data linkage protocols have markedly increased the feasibility and opportunity for successfully utilising data linkage for the purposes of research, while at the same time protecting the privacy of the individual. An awareness and appropriate management of the associated challenges is required to maximise the outcomes of disability research using linked data.

Objective: During the last 50 years there have been significant improvements in life expectancy among people with intellectual disability (ID), and so their incidence of age-associated diseases, such as cancer, is rising. The aim of this study was to compare the rate of cancer in people with ID with that found in the general population., Methods: Information on 9409 individuals registered with the Disability Services Commission of Western Australia was linked to the State Cancer Registry, with 200 cases of cancer detected over 156,729 person-years. Standardised incidence ratios (SIRs) and 95% confidence intervals were calculated for both sexes separately by 5-year age groups for the period 1982-2001. The same procedures were adopted in the estimation of SIRs for specific types of cancers., Results: The age-standardised incidence of all cancers in people with ID was not significantly different from the general population. However, males with ID were observed to have a significantly increased risk of leukaemia, brain and stomach cancers, and a reduced risk of prostate cancer, while leukaemia, corpus uteri and colorectal cancers were significantly higher in females., Conclusions: Health practitioners need to be aware that with improvements in life expectancy the incidence of cancer in people with ID is likely to rise. More proactive health promotion campaigns may be needed for people with ID, who are likely to be poor users of screening services and whose symptoms may not be reported until they are in more advanced, less treatable stages of disease.

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: 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: 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.

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.

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]

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]

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. [ABSTRACT FROM AUTHOR]

This paper is about older people with learning disabilities who live in the country in Australia. We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder. These people said that they were well supported by the local community and particularly their doctors. However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like. 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. 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. 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. 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. [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]