Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.     

Coordination and integration of disability services for the elderly: a viewpoint

The provision of disability services for the elderly in Australia is fragmented with areas of duplication arising chiefly from disorganized planning with the States and Territories providing certain services independent of Commonwealth contribution. It is suggested that the Commonwealth should be responsible for the complete provision of disability services for the elderly comprising community services and residential care. Private providers competing with each other for efficient provision of such services should be sought with financial incentives in funding arrangements encouraging healthy ageing thereby reducing expenditure in health care in the next decades.     

Making space for belonging: Critical reflections on the implementation of personalised adult social care under the veil of meaningful inclusion

This paper critically reflects on the way in which recent adult social care reform has been evolving beneath the alleged policy goal of prioritising the cultivation of meaningful inclusion and ‘belonging’ in the community. With this goal, there has been a focus away from ‘services’ for persons with intellectual disabilities, to supporting natural connections within the community. This paper draws on a grounded theory study of the perspectives of those responsible for overseeing community living arrangements for persons with disabilities, drawing on interviews and focus groups with service providers and relevant government officials. It examines the socio-spatial implications of the gradual shift towards ‘belonging’ as a disability policy goal, as it has evolved in two discrete settings – British Columbia, Canada and Ireland. The findings identify the complexities involved in facilitating active community connection for persons with intellectual disabilities and reveal important cautionary lessons for other jurisdictions where community living policy has arguably been moving away from communal services towards self-managed supports in ‘real’ communities through personal budgets in an effort to remove barriers to participation. The paper thus critically reflects on the rapid pursuit for transformation in personalised adult social care in government policy, arguing that the process of fostering meaningful community inclusion will and should take time.     

Developing and utilising a new funding model for home‐care services in New Zealand

Worldwide increases in the numbers of older people alongside an accompanying international policy incentive to support ageing‐in‐place have focussed the importance of home‐care services as an alternative to institutionalisation. Despite this, funding models that facilitate a responsive, flexible approach are lacking. Casemix provides one solution, but the transition from the well‐established hospital system to community has been problematic. This research seeks to develop a Casemix funding solution for home‐care services through meaningful client profile groups and supporting pathways. Unique assessments from 3,135 older people were collected from two health board regions in 2012. Of these, 1,009 arose from older people with non‐complex needs using the interRAI‐Contact Assessment (CA) and 2,126 from the interRAI‐Home‐Care (HC) from older people with complex needs. Home‐care service hours were collected for 3 months following each assessment and the mean weekly hours were calculated. Data were analysed using a decision tree analysis, whereby mean hours of weekly home‐care was the dependent variable with responses from the assessment tools, the independent variables. A total of three main groups were developed from the interRAI‐CA, each one further classified into “stable” or “flexible.” The classification explained 16% of formal home‐care service hour variability. Analysis of the interRAI‐HC generated 33 clusters, organised through eight disability “sub” groups and five “lead” groups. The groupings explained 24% of formal home‐care services hour variance. Adopting a Casemix system within home‐care services can facilitate a more appropriate response to the changing needs of older people.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Workplace stress,burnout and coping: a qualitative study of the experiences of Australian disability support workers

Disability support workers (DSWs) are the backbone of contemporary disability support services and the interface through which disability philosophies and policies are translated into practical action. DSWs often experience workplace stress and burnout, resulting in a high turnover rate of employees within the non‐professional disability service workforce. The full implementation of the National Disability Insurance Scheme in Australia is set to intensify the current challenges of attracting and retaining DSWs, as the role becomes characterised by greater demands, ambiguity and conflict. The aim of this study was to explore DSWs' perceptions of enjoyable and challenging aspects of disability support work, sources of stress and burnout and the strategies they use to cope when these issues arise. Twelve DSWs workers providing support for adults living with intellectual and physical disabilities were interviewed. Thematic analysis revealed a superordinate theme of ‘Balance’ comprising three sub‐themes: ‘Balancing Negatives and Positives’, ‘Periods of Imbalance’, and ‘Strategies to Reclaim Balance’. Participants spoke of the rewarding and uplifting times in their job such as watching a client learn new skills and being shown appreciation. These moments were contrasted by emotionally and physically draining aspects of their work, including challenging client behaviour, earning a low income, and having limited power to make decisions. Participants described periods of imbalance, wherein the negatives of their job outweighed the positives, resulting in stress and sometimes burnout. Participants often had to actively seek support and tended to rely on their own strategies to manage stress. Findings suggest that organisational support together with workplace interventions that support DSWs to perceive the positive aspects of their work, such as acceptance and mindfulness‐based approaches, may help to limit experiences of stress and burnout. The further development and evaluation of emotion‐focused workplace therapies, and interventions that consider organisational (macro) factors is suggested.     

'It's the system working for the system': carers' experiences of learning disability services in Ireland

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers ( n  = 25) and representatives from national carer organisations ( n  = 6) in Ireland. These were people caring for an adult (18–30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.     

Evaluation of the processes of family‐centred care for young children with intellectual disability in Western Australia

Introduction Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family‐centred care. The aim of this study was to evaluate how well it was being practised, to describe the pattern of service utilization and to identify factors influencing parental perceptions of family‐centred care. Methods The study included children aged 0–6 years with ID, who were registered clients of Disability Services Commission, Western Australia. Parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC‐56) questionnaire. Mean scores for the five MPOC domains were compared using anova against the independent variables of child age group, child diagnostic group, service type and frequency, place of residence, family and demographic variables. Significant variables in each domain were then entered into multivariate analyses. Results Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co‐ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Conclusion Overall respondents reported early intervention services for young children with ID in Western Australia provided satisfactory family‐centred care by means of the 56‐item MPOC. The frequency of contact with allied health professionals was positively associated with parental ratings of family‐centred care. The study indicates under‐servicing in dental care and psychology services.     

Barriers to managing mental health in Western Australia

Objective: To explore the views of community‐care and mental health workers on barriers to the management of mental health problems in rural Western Australia, and how these could be addressed. Design: Qualitative content analysis of semi‐structured interviews. Setting: Community and mental health services in Esperance. Subjects: One hundred per cent of relevant mental health workers, 86% of community health professionals and representatives from a wide range of community organisations were interviewed (n =38). Main outcome measures: The views of community‐care and mental health workers on barriers to the management of mental health, and how these could be addressed. Results: Barriers included confusion about the role of mental health services, limited after‐hours access and help for those in situational crisis, communication problems between services, differences in working practices and difficulties in dealing with the stigma of mental illness in rural communities. Suggested solutions were an expansion of counselling services and multi‐agency shared care with clinical streams for adults, those aged > 65 and children. Conclusion: This study revealed a number of barriers that are being addressed through a memorandum of understanding between services.     

User involvement in the development of a health promotion technology for older people: findings from the SWISH project

Successive English government policies about older people’s health and well‐being aim to improve health and quality of life by promoting independence. Improving access to information and services that can improve health and well‐being and reduce health risks is central to the modernisation of health and social care. Most recently, tailored and person‐centred approaches with a strong emphasis on promoting health and well‐being are central to policy, including the proposals for ‘Life Checks’ and the recent emphasis on commissioning ‘community well‐being’. We carried out a qualitative study to identify the key aspects of social situations that affect health and well‐being, from the perspectives of older people and professionals, to enrich and expand an existing health risk appraisal tool so that it could be used for self‐assessment of health and social well‐being. This tool, Health Risk Appraisal in Older people (HRAO), has been evaluated in different European settings, including English general practice. Focus groups were recruited from general practice, older people’s forums, social care and voluntary organisations in two London boroughs where the HRAO tool had previously been tested. The social factors determining health that were prioritised by older people and service providers and recommended for inclusion in the health risk appraisal tool were recent life events, housing and garden maintenance, transport, both public and private, financial management, carer status & needs, the local environment and social networks and social isolation. This study has identified key social determinants of health that could usefully be added to ‘Life Checks’ for older people and that could also inform the commissioning of community well‐being. Modified with the addition of social domains, the HRAO technology could be a suitable tool to achieve current policy objectives.     

Changing the balance of social care for older people: simulating scenarios under demographic ageing in New Zealand

The demographic ageing of New Zealand society, as elsewhere in the developed world, has dramatically increased the proportion of older people (aged 65 years and over) in the population. This has major policy implications for the future organisation of social care. Our objective was to test the effects on social care use, first, of putative changes in the overall disability profile of older people, and second, of alterations to the balance of their care, i.e. whether it was community‐based or residential. In order to undertake these experiments, we developed a microsimulation model of the later life course using individual‐level data from two official national survey series on health and disability, respectively, to generate a synthetic version which replicated original data and parameter settings. A baseline projection under current settings from 2001 to 2021 showed moderate increases in disability and associated social care use. Artificially decreasing disability levels, below the baseline projection, only moderately reduced the use of community care (both informal and formal). Scenarios implemented by rebalancing towards informal care use moderately reduced formal care use. However, only moderate compensatory increases in community‐based care were required to markedly decrease the transition to residential care. The disability impact of demographic ageing may not have a major negative effect on system resources in developed countries like New Zealand. As well as healthy ageing, changing the balance of social care may alleviate the impact of increasing demand due to an expanding population of older people.     

Support networks for Chinese older immigrants accessing English health and social care services: the concept of Bridge People

As Chinese immigrants in the United Kingdom age, they experience an increasing need to access health and care services. It has, however, been reported that older Chinese immigrants have difficulties in accessing these services. This study explored the experiences of this population in using health and care services and the strategies that they adopted to address their difficulties. A grounded theory method with a two‐staged research design was used. Stage 1 explored the participants’ experiences of ageing and use of health and social care services through focus group interviews. Stage 2 investigated the strategies individuals used to support access to and use of services through individual interviews. Forty‐four older Chinese people and 15 supporters participated in interviews during August 2011 and May 2013. These older Chinese immigrants were challenged in knowing about and in accessing services. Their difficulties were attributed to language barriers, lack of information and instrumental support, and emotional and cultural issues regarding use of health and care services. Their supporters facilitated access to services and acted as a bridge between the service and the user; therefore, they were given the title ‘Bridge People’. Bridge People have different backgrounds: family and friends, public sector workers and staff from community‐based Chinese organisations. The defining attributes of these supporters were: bilinguality, bicultural, multifunctionality and accessibility. There is no charge for this support; and the relationship between the Bridge Person and recipient involves trust and influence over decisions regarding use of health and care services. Bridge People should be recognised and identified by health, social care and housing services to promote engagement and use of services by older immigrant Chinese people.     

Sustainable primary health care services in rural and remote areas: innovation and evidence

Objective: To highlight how evidence from studies of innovative rural and remote models of service provision can inform global health system reform in order to develop appropriate, accessible and sustainable primary health care (PHC) services to ‘difficult‐to‐service’ communities. Methods: The paper synthesises evidence from remote and rural PHC health service innovations in Australia. Results: There is a strong history of PHC innovation in Australia. Successful health service models are ‘contextualised’ to address diverse conditions. They also require systemic solutions, which address a range of interlinked factors such as governance, leadership and management, adequate funding, infrastructure, service linkages and workforce. An effective systemic approach relies on alignment of changes at the health service level with those in the external policy environment. Ideally, every level of government or health authority needs to agree on policy and funding arrangements for optimal service development. A systematic approach in addressing these health system requirements is also important. Service providers, funders and consumers need to know what type and level of services they can reasonably expect in different community contexts, but there are gaps in agreed indicators and benchmarks for PHC services. In order to be able to comprehensively monitor and evaluate services, as well as benchmarks, we need adequate national information systems. Conclusions: Despite the gaps in our knowledge, we do have a significant amount of information about what works, where and why. At a time of global PHC reform, applying this knowledge will contribute significantly to the development of appropriate, sustainable PHC services and improving access.     

Equity in social care for people with intellectual disabilities? A cross‐sectional study examining the distribution of social care funding across local authorities in England

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting ‘child welfare inequalities’. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013–2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.     

Home and community care for older people in urban China: Receipt of services and sources of payment

This study investigates the characteristics of Chinese older people receiving home and community care and the factors associated with the sources of payment for care services. The data come from the Social Survey of Older People in Urban China, which collected information from a random sample of 3,247 older people aged 60 and over in 10 large cities in different regions of China in 2017. Anderson's behavioural model of care utilisation is used to guide the analyses. The study identifies four striking features of the Chinese social care system. First, although disabilities are a significant predictor of receiving home and community care, a large proportion of care recipients do not have disabilities. Second, perceived proximity of care is the most important predictor, which implies high elasticity of demand for care services with regard to perceived distance and the great geographical inequality of care resources in the cities. Third, the government policies support the use of the internet to facilitate care access, but the enabling effect of the internet among older people is limited. Finally, sources of payment for care differ significantly according to people's age, living arrangements, disability and level of education. We argue that the government should consider shifting the focus of financial support from service providers to care recipients in the future.     

Information‐sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information‐sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information‐sharing between carers, older people and respite services. An explorative, cross‐sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information‐sharing with respite services changed over time across three temporal phases: ‘Reaching a point’, ‘Trying it out’ and ‘Settled in’. Proactive information‐sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information‐sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information‐sharing but traditional approaches will remain important.     

Assessment staff in home and community care services: issues of learning and professional identity in Australia

Home and Community Care (HACC) is a funding programme of the Commonwealth and State governments of Australia which supports the vast majority of community care services. Gaining access to basic community care services is via an assessment process undertaken by workers in roles that may be comprised partially or solely of assessment and care planning tasks. Arguably, the role of assessor in the HACC programme has become increasingly professionalised in recent years, and the complexity and demands of the role have increased. However, to date, little information has been available about the composition of this workforce, making initiatives to improve practice difficult to plan and implement. This paper reports findings of research from Victoria in which interviews were conducted with a range of key informants, and staff employed in client assessment roles. Results indicate considerable diversity on issues such as: the professional backgrounds of HACC assessment staff; the education, training and support they receive; how they learn their role; and what they draw upon to assist decision‐making. A significant theme to emerge is that the nature of their practice derives substantially from the local contexts in which they work. In the absence of a single profession or narrative that guides their practice, they draw from a diverse range of knowledge sources. The significance of the workplace as a site of professional learning, which may provide the basis for the development of a new qualification for this workforce, is highlighted, as is the need for a professional body for this group of workers.     

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health‐related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age‐related health needs. The semi‐structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long‐term relationship with those they support was identified as being important to identifying any health‐related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health‐related communication.