Perceived health and wellbeing among community-dwelling older Australians with intellectual disability: A comparison with age peers.

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.

Mitigating the impact of the 'silos' between the disability and aged-care sectors in Australia: Development of a Best Practice Framework.

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.

Multimorbidity in older people with intellectual disability.

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.

'We Just Call Them People': Positive Regard as a Dimension of Culture in Group Homes for People with Severe Intellectual Disability.

BACKGROUND: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively. METHOD: Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review. RESULTS: Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities. CONCLUSIONS: This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.

Identifying good group homes: qualitative indicators using a quality of life framework.

Abstract Despite change toward more individualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9-12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.

Building an inclusive research team: the importance of team building and skills training.

BACKGROUND: Inclusive research teams typically describe their experiences and analyse the type of involvement of researchers with disability, but the process of building research teams and the need for research training still remain underexplored in the literature. MATERIALS AND METHOD: Four researchers with intellectual disabilities and four academic researchers developed an inclusive research team. The team conducted 15 research training sessions, focused on investigating the well-being of older women with intellectual disabilities. They used mobile technology to support research skills acquisition. RESULTS: Findings included the experiences of all team members regarding the team building during training. CONCLUSIONS: To become an effective inclusive research team, all team members, regardless of ability, need to bring their own experiences and also learn necessary research skills. This paper highlights the need for team building, joint research training among all members of the research team and strategies supporting the peer-mentoring within the team. We are a team of four researchers with intellectual disabilities and four academic researchers without an intellectual disability. Our aim has been to learn about research together. We want to do this so that we can carry out a research project together about how older women with intellectual disabilities live. We have decided to call our team 'Welcome to our Class'. We have been working together for 9 months. In this time we have had 15 research training meetings. We have learned What research is How to work out a research question, that is what we want to find out about How to get information on what we want to find out. Here we thought of interview questions we could ask older women with intellectual disabilities. We are now meeting once a month, and have just begun our research on finding out how older women with intellectual disabilities live. We are now starting to use what we have learned.

Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability.

Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.

Issues of active ageing: perceptions of older people with lifelong intellectual disability.

OBJECTIVE(S): The study aimed to investigate the lived experiences of older people with lifelong intellectual disability and to explore the meaning of active ageing for this group. METHODS: Data were collected using semistructured interviews with 16 service users (people with lifelong intellectual disability aged 50+ years); 16 service providers and 16 key informal network members from regional/rural and urban areas in Queensland and Victoria. RESULTS: Themes identified: being empowered, being actively involved, having a sense of security, maintaining skills and learning, having congenial living arrangements, having optimal health and fitness, being safe and feeling safe and having satisfying relationships and support. CONCLUSIONS: Service users wanted to 'keep on keeping-on' in areas of life that gave them pleasure rather than discontinuing them because of age. They wanted more control over issues affecting their lives and to be given meaningful roles. Mental stimulation, companionship, reliable support and safety were valued by this group.