Search

Background: While there has been a strong national and international emphasis on social inclusion over the past 15 years, many people with intellectual disabilities remain socially isolated in their communities. Mobile technology has the potential to support social inclusion and there is great interest among adults with intellectual disabilities in using technologies such as computers, smartphones, tablets and the internet. This study aimed to investigate the use of mobile technology by people with intellectual disabilities, and its capacity to improve their social inclusion. Methods: Data were collected using individual interview, group interviews or interviews using Photovoice with 32 adults with intellectual disabilities and analysed using inductive content analysis. Findings: Findings indicated that adults with intellectual disabilities use various mobile technology and apps for multiple purposes, including social activities, work, support, productivity, navigation and entertainment. Enabling inclusion, increasing convenience and accessibility were viewed as advantages of mobile technology, while disadvantages were related to social issues and dangers resulting from the use of mobile technology and the practical limitations and ubiquitous nature of mobile technology. Barriers to using mobile technology included having limited access to the technology itself in certain contexts and difficulties with its use. Receiving support from others and awareness of safety measures enabled the use of mobile technology among the participants. To facilitate the use of mobile technology among people with intellectual disabilities, there needs to be greater education about this and other technologies including their features, design and apps. Importantly, people with intellectual disabilities need to be involved in the design of apps. Conclusions: To fully harness the potential of using mobile technology for the purpose of developing social relationships and sense of belonging in the community, people with intellectual disabilities should be supported in developing an awareness of the limitations of mobile technology and practicing appropriate safety measures. Accessible summary: Many people with intellectual disabilities are lonely in their communities. Mobile technology can help people to feel connected.32 people with intellectual disabilities from News South Wales, Australia, took part in interviews, focus groups and taking photos.People use mobile technology and apps for social activities, work and entertainment. People said mobile technology and apps help with inclusion, accessibility and making things easier. Disadvantages of using mobile technology include unsafe online contacts and no Wi‐Fi connections.People should take risks when using mobile technology if it does more good than harm. We found out about barriers to using mobile technology, some people do not have access to it. Mobile technology equipment and apps should be developed together with people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Accessible Summary: ●Lisa Scott became an artist after she joined a supported studio in Sydney, Australia.●The studio is like her second family, and the staff have always told her 'you can do this'.●Lisa is proud that she is an artist and likes being able to share her work.●Lisa made an artwork about her life story and some big changes she has experienced. Background: Over 10 years ago, Lisa Scott first began making art at a studio in Sydney that supports people with intellectual disability to realise their creative ambitions. In this article, we consider what it has meant for Lisa to become an artist and, in the process, share the story of other big changes in her life. Methods: During audio‐recorded conversations, we discussed Lisa's life story and the role of her creative practice within it. We worked together to write about some of the things we discussed. Findings: Becoming an artist has been an important transition for Lisa. With the support of staff at the studio, she has realised what she is capable of, and so have other people—from her family to complete strangers—who all value her work. Through her art, Lisa has been able to find personal relief and reflect on big changes in her life, including the loss of her mum. In a dress hand‐stitched with words from her journals, she has explored another way of sharing her story. Conclusions: Art at its best forges connections between people. Lisa's art and life are evidence of this. [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]

Accessible summary • In this study we asked six young people with intellectual disabilities what they thought about becoming independent in their families. • One person wanted more independence within her family and sometimes this caused fights. Three people were happy with the independence they had in their families and did not want things to change. Two people, with the help and support of their families, were trying to be more independent. • Families play an important part in young people becoming more independent. It was important for this group of young people for their families to understand and support their points of view. There is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under-represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18–25 years, and two waves of responsive interviews. First interviews explored participants’ life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict-ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision-making, and by supporting them to take on varied and valued roles and responsibilities within the family and community. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable. Methods: Linked data that had previously been used to identify underlying causes of deaths were re‐analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018. Findings: Two thousand three hundred and thirty‐three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7–78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4–20.4), and coronary heart disease (RR 3.3; 95% CI 2.8–3.8). Conclusions: Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors. Accessible Summary: Only one major cause of a person's death is usually counted, but other information on contributing causes is often available.We used national data across Australia to look at contributing causes of death in people with intellectual or learning disabilities.Counting contributing causes of death is important because it can help to find ways that deaths of people with intellectual disabilities may be prevented.We found that people with intellectual disabilities were much more likely than other people to have contributing causes of death from lung infections, choking, flu and heart problems.Knowing that these causes happen more often in people with intellectual disabilities, can help health and disability services to identify these causes earlier and may prevent deaths. [ABSTRACT FROM AUTHOR]

Accessible summary • This article is about how people with learning disabilities helped to produce a history about Australia’s oldest and largest purpose-built institution for people with learning disabilities, Kew Cottages. • The study uses oral history to empower people with learning disabilities to tell their stories in their own words. • I believe that it is important for oral histories to be accessible for people with learning disabilities. So I used a new form of history-making, digital storytelling/histories, to produce a DVD using text, sounds and images. • This research is important for people with learning disabilities because it explains how traditional oral history techniques can be used with new media technology to create collaborative, meaningful and accessible publications. The following article outlines the methodological approach used to include people with learning disabilities as active participants in an oral history produced in Australia. The history sought to document life inside Kew Cottages, Australia’s oldest and largest specialised institution for people with learning disabilities. This work furthers existing research being conducted with people with learning disabilities in the fields of oral history and life history. The article explores: research ethics, the value of oral history and the positive benefits for inclusive learning disability research using digital storytelling/histories. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable. Methods: Linked data that had previously been used to identify underlying causes of deaths were re-analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018. Findings: Two thousand three hundred and thirty-three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7-78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4-20.4), and coronary heart disease (RR 3.3; 95% CI 2.8--3.8). Conclusions: Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors.

Background: People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports. Methods: A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18‐month period, including during the COVID‐19 pandemic, the study quantified health service use in hospital‐ and community‐based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated. Findings: Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision‐maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID‐19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period. Conclusions: For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID‐19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability. Accessible summary: People with intellectual disability frequently need support to go to a health service.Our study looked at how people in group homes receive this support.We found that after COVID‐19 restrictions, people received fewer health services.This is important as we need to make sure that people receive the health services that they need. [ABSTRACT FROM AUTHOR]

Background: The hospital or health passport is widely acknowledged as a central element in making reasonable adjustments for patients with intellectual disabilities. Historically, the health passport has been used exclusively for patients with intellectual disabilities; however, it has wider applications for any patient requiring additional support. Commonly, it documents past medical history, communication needs and a person's means of expressing pain. There are, however, significant barriers to their use, meaning patients are unable to access adjustments to improve their experiences in a healthcare system that already marginalises and discriminates against people with intellectual disabilities. This umbrella review aims to establish whether the passport is an effective reasonable adjustment, identify barriers to its use and make recommendations to alleviate these barriers. Methods: Database and citation searches informed a synthesis of international evidence to address these aims. Following the removal of duplicates and screening, nine review papers originating from the United Kingdom, Australia and Ireland were identified for inclusion. Seven focus on the use of passports for patients with intellectual disabilities, one on the use of passports for autistic people, and one exploring the use of passports for patients with dementia. Findings: The results demonstrated that the passports are effective in improving care for patients with intellectual disabilities. However, there are barriers to its routine use. We identified three main issues with the current use of the hospital passport. First, there is a need for greater managerial support to implement reasonable adjustments. Second, standardisation of the passports at a national level will make them more accessible to healthcare professionals and will ensure that information is not 'buried'; the development of a standardised passport must involve consultation of patients, carers and staff to meet the needs of all stakeholders. Finally, education for all healthcare staff to raise awareness of the passport and ensure it is utilised appropriately will ultimately pave the way for positive, long-lasting change. Conclusions: Passports can be an effective means of communicating reasonable adjustments. Addressing a lack of awareness of its utility, ensuring managerial commitment to implementing reasonable adjustments and making the passport accessible through a standardised format will empower patients to engage with their own care.

Background: People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports. Methods: A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18-month period, including during the COVID-19 pandemic, the study quantified health service use in hospital- and community-based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated. Findings: Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10-33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision-maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID-19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period. Conclusions: For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID-19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability.

Planning allows people with disabilities and their carers to take steps to achieve their dreams and helps to ensure their security for the future. People with disabilities want to enjoy the same experiences that most other people enjoy, such as relationships, going to the movies with friends, having a job and going on holidays. The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous 'Futures Planning' projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security. This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project. The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the 'Futures Planning' documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years. Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams. [ABSTRACT FROM AUTHOR]

Accessible summary • This article looks at the work carried out by people with learning disabilities who lived in the Kew Cottages in Australia. • It argues that these people were treated unfairly because they were not paid for the work they did, even though that work was valuable and important. • Even though they were being treated unfairly, some people at the Cottages may have chosen to work because it gave them a way to spend their time and because people who worked had more freedom and were better treated. This article examines the exploitation of patient labour at Kew Cottages, Australia’s first purpose-built state institution for people with learning disabilities. Analysing historical evidence for the period 1887–1950 shows that unpaid patient labour contributed significantly to the economy of the Cottages and so to the government department of which they were a part. It also argues that government failure to provide adequately for patient needs and to rectify unsafe working conditions further exploited working patients. The final section of the article examines why some patient-labourers may have chosen to work, arguing that the restrictive, materially impoverished and relatively isolated social world in which they found themselves were an important influence on their decisions to do so. [ABSTRACT FROM AUTHOR]

Accessible summary • People with learning disability are just as likely as people in the general population to get cancer. • In this study we have looked at how often clients who get cancer are admitted to hospital. • We found that clients who get cancer are admitted to hospital much more often than clients who do not get cancer. • We also looked at the experiences of two clients to show what clients have to go through when they get cancer. • This research could help parents/carers and clients to know what to expect when people with learning disability need treatment and care for cancer. In Australia, general health and medical services are subsidised by the government. This includes care for people with disabilities, screening and diagnostic services for common diseases, including cancer, and care and treatment for various medical conditions. In Western Australia, the majority of state-provided health services are well documented in linkable databases. We have examined data from a large cohort of people receiving services for learning disability from the state and linked this with the state cancer registry and hospital records. While people with learning disability appear to be at similar risk for cancer, they may have poorer treatment outcomes as they already experience a range of health conditions which can exacerbate medical complications associated with treatment and/or other primary or secondary co-morbid conditions. Our results show that the mean number of hospital admissions were higher for the cancer group, even when adjustments were made for conditions such as childhood leukaemia and renal dialysis both of which often require frequent hospitalisations. Multivariate regression analyses showed that younger age, female sex and severe or unspecified level of disability were significant contributors to the frequency of hospital admissions. Qualitative information gleaned from detailed chart reviews showed that in addition to considerable morbidity, some patients were admitted repeatedly either because of lack of supportive environments and/or lack of compliance with treatment. Issues in providing appropriate support services for individuals and their carers are discussed. [ABSTRACT FROM AUTHOR]