Qualitative examination of rural service provision to persons with concurrent developmental and mental health challenges

Although there has been an international trend away from institutionalization to community-based care, this has not always been successful, particularly for the unique and vulnerable population diagnosed with both mental health and developmental disabilities. The challenge of meeting the needs of this population is increased in rural and remote areas. As a part of a larger study, this paper reports on the voices of service providers for people dually diagnosed as they maneuver through the considerable challenges of meeting complex needs while located in remote northern communities. The complexities of rural service provision for those with a dual diagnosis of mental illness and developmental disability is also highlighted and includes challenges of northern living, difficulties in diagnosis, and system level issues. This paper confronts the inequities in provision of effective community-based services to this population and draws attention to the need to support and develop local, integrated services in order to build inclusive communities for all.     

Poverty and disability in Eastern and Western Cape Provinces,South Africa

The impact of disability on the living conditions of people living in specifically resource‐poor areas in South Africa has not previously been addressed. This paper presents a comparison of people with a disability and their non‐disabled peers with respect to some key poverty indicators among a sample of Xhosa speaking individuals in resource‐poor areas of Eastern and Western Cape Provinces. A questionnaire on the level of living conditions (household composition and socio‐economic characteristics) and a detailed disability questionnaire that captured more specific details of the disability experience of the individual with a disability were adapted to the South African context and utilised. Despite the improved situation of households with a disabled family member in terms of financial resources (due primarily to the allocation of disability grants), other measures of poverty (education and employment) remain divisive for those with disabilities.     

‘Can anything good come out of this mouth?’ Female experiences of disability in Malawi

The aim of this article is to give an overview of the daily life stories of 23 women with disabilities in Malawi. The stories were gained through qualitative interviews that covered aspects of being a woman and living with a disability in Malawi. Recent studies from countries in southern Africa have documented how people with disabilities experience poorer living conditions than people without disabilities. It is generally assumed that the living conditions of women are worse than those of men. There is, however, a large gap in the literature concerning women with disabilities in Africa. The results present a mixed picture. While several of the informants had experienced discrimination and exclusion because of their impairments, most of the women had been well taken care of and were treated equally by their closest family and friends. They had a strong wish to be empowered through education and employment.     

Examining More Inclusive Approaches to Social Work,Physical Disability,and Sexuality

People with disabilities often experience the idea that those with disabilities are not, or should not be, sexual beings. This article examines how people with physical disabilities define sexual activity, their levels of sexual satisfaction, group differences in how people define different acts as sexual activities, and the differences in levels of sexual satisfaction. Additionally, this study (N?=?450) looks at the correlations between levels of independence in multiple contexts. Levels of independence are also assessed in relationship to severity of disability and sexual satisfaction. Implications for social work and social service practice, education, and policy are discussed.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Making Direct Payments a Choice: a report on the research findings

We describe research done in the London Borough of Tower Hamlets under the supervision of the local Coalition of Disabled People. It involved three different client groups-people with learning difficulties, mental health service users and those with physical disabilities. Few of these service users, their carers and staff had any experience or knowledge of people with disabilities receiving cash to purchase their own support. The study focused on several issues: how to provide effective information; what sorts of support could direct payments purchase; how could it be accessed; how could users handle the money; how could it all be evaluated? Most carers, staff and users considered this radical idea favourably, but were suspicious of their own local authority and would want independent systems of supervision and monitoring, accountable to other users, rather than professionals.     

Self-advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self-advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy-makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self-identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research.     

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.     

How Far to Gay? The Politics of HIV in Learning Disability

This paper examines work in sexual health and HIV prevention in services for people with learning disabilities from a political stance associated with the rehomosexualisation of AIDS in Britain. Arguments are made for the re-homosexualisation of AIDS in services for people with learning disabilities, based on evidence of where HIV risk lies in relation to men with learning disabilities who have sex with men. This provides an opportunity to critically review approaches and responses to HIV risk assessment and risk management in services for people with learning disabilities, with reference to the assumptions which underpin practice and issues of sexual identity. The case is made for a more radical sexual politics in learning disability to help combat HIV and to provide more realistic approaches to service commissioning and safer sex education. Pointers for service development and key areas where the re-homosexualisation of AIDS can inform practice and resource development are also provided.     

The Effect of Social Work Education and Self-Esteem on Students' Social Discrimination of People with Disabilities

Social work education on disability content has become more important due to political changes in the last two decades. The United States protected people with disabilities from discrimination in community and employment settings with the enactment of the Americans with Disabilities Act of 1990. These changes have empowered people with disabilities to become more independent; however, social workers primarily fulfill roles as case managers, and often make decisions for people with disabilities. This is not consistent with the empowerment perspective embedded in the disability movement. Most social work schools have minimal courses covering disability content. Previous research and the Self-Esteem Hypothesis indicate that social work education, social proximity to people with disabilities, self-esteem and other demographic characteristics are associated with social discrimination, or attitudes, toward people with disabilities. Social work students (n = 73) participated in a survey in the last semester of their program to assess how these characteristics were associated with their attitudes towards people with disabilities. A multiple linear regression revealed that social work education preparedness to work with people with disabilities, an MSW education, self-esteem, and having a friend with a disability were significantly associated with students' social discrimination towards people with disabilities.     

Young Carers: challenging the facts and politics of research into children and caring

This paper critically reviews existing research on young carers. I argue that our knowledge of what young carers do and how they differ from other children, is extremely limited. Without this information, practice recommendations will be based on guesswork and prejudice. I argue that the existing literature pays lip service to the support, or lack of it, that disabled people need to empower them as parents. In this context, I also review research into the relationship between disability and parenting. Research has tended to involve the search for the negative impact of an adult's disability on a child's growth, intelligence and adjustment. This has therefore told us little about how parental disability affects the domestic and caring tasks of children. There is a conceptual hole in the middle of our existing awareness about caring and childhood, with which future research must attempt to grapple.     

Living with dementia in rural and remote Scotland: Diverse experiences of people with dementia and their carers

There is a lack of research into people's experiences of using services as dementia sufferers themselves, or because they care for someone with dementia, in rural areas. This article explores their experiences in the context of rural Scotland, drawing on data gathered from both people with dementia and their carers. Our research suggests that understanding the nuanced and co-constituted experience of dementia in rural communities is a pre-requisite for improving service provision. The paper explores the way in which participants linked their experiences to their spatial location in rural areas. Our findings suggest that participants used a narrative of idealised rurality which linked together interwoven and overlapping social networks, a physical relationship with place and a sense of self sufficiency. However, the participants’ stories also highlighted the diversity in experiences as service users between places, suggesting a disjunction between the generalising narrative of the rural idyll and their particular situations. These findings extend the literature on rural mental health issues and on the experience of dementia in particular, in turn helping to inform place and person centred policies.     

My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries

This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. We explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. We also explored whether clients' sexual well-being needs could be met without carers or clients 'crossing the line'. Our findings indicate the multiple ways that 'professional boundaries' were negotiated between clients and professional carers. The data show that the location of the 'line' changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.     

Understanding emerging disabilities

This research seeks to understand social and environmental characteristics that distinguish emerging from traditional disability populations. We qualitatively analysed how emerging disabilities are understood by persons with disabilities, and used these themes with a public use data source to analyse differences between emerging and traditional disabilities. Our findings first illustrate the difficulty in diagnosing and categorizing emerging disabilities. This is true for both persons who have these conditions and medical personnel who are expected to interpret them. Compared with persons with traditional disabilities, persons with emerging disabilities had less education, greater difficulties with activities of daily living, lower income, less private insurance, more frequent medical care and were less likely to work. The picture emerges of that of an underclass within society. There is an ongoing need for a referral and support system with greater recognition and acceptance of all disabilities, especially within independent living centers and among employers.     

Increasingly Strange Bedfellows? An Examination of the Inclusion of Disability Issues in University- and Agency-based Social Work Education in a Welsh Context

Previous research has indicated relative reluctance among student social workers to plan future careers working with people with physical impairments. This continuing longitudinal study followed one cohort of undergraduate social work students from induction, to investigate and contribute to the development of effective curriculum strategies in preparing students for contemporary generic social work practice in relation to disability issues. A mixed methodology approach utilising questionnaires and focus groups was used to track the development of social work student perceptions of their preparedness for working with disabled people at different points in their education.

Preliminary results revealed that while personal experience is a strong determinant of future interest in working within a particular service area, the use of case studies designed and delivered in conjunction with service users, carers and current practitioners appeared to be a particularly positive method of encouraging students to reflect upon real-life challenges within a safe environment. Results also suggest that interweaving features of a curriculum infusion model with a distinct module approach may moderate the gap that is perceived by students as remaining stubbornly prevalent between university- and agency-based learning.     

Identity challenges and social experiences of higher education students with disabilities in Slovenia

This article focuses on the experiences and experiencing of disability, policies of self-understanding, and the life plans and aspirations of students with disabilities. The article draws on the results of a qualitative survey of students with disabilities taking courses in various faculties of the University of Ljubljana. The results show that students with disabilities are able to reshape their identities in a way that does not consist of the disability experienced, but is independent of it, and they are able to accept their disability as the reality of life without losing their own purpose of living and life plans. This experience is a significant part of the identity formation of people with disabilities, and the social experience of people with disabilities strengthens their selfhood while also producing new responses and challenges to contemporary issues of identity formation and identity policies.     

Barriers to Economic Security: Disability,Employment, and Asset Disparities in Canada

Although ample research shows that people with disabilities face significant labor market barriers, questions remain about whether and how disadvantages in employment and earnings contribute to economic insecurity. We use 1999 to 2012 Canadian Survey of Financial Security data to study disparities in nonhousing assets, which include household savings, stocks, and pensions, across households with and without disabilities. We find that households where the respondent or their spouse reported a disability held 25 percent less in nonhousing assets after accounting for key employment, education, and demographic factors. Demonstrating the more complicated relationship between disability, employment, and assets, these direct effects were further strengthened by disability's indirect effects on assets through its relationship with employment income.     

Social work field education: believing in supervisors who are living with disabilities

Much of what is written by non-disabled authors about living with disabilities does not mirror people’s experiences or opportunities. Literature is often written about people’s abilities (or disabilities) rather than by or with people. Discourse about supervision of social work students can risk assuming that supervisors are people who do not identify as living with disabilities. This research is a co-operative inquiry into the experience of being an Australian social work student supervisor who is living with disabilities. The article extends the literature about being a social work field educator to include ability, and values the practice wisdom of experienced social workers including a current student supervisor who is living with a disability.     

Engaging with Disability Services: Experiences of Families from Chinese Backgrounds in Sydney

People from Chinese backgrounds remain underrepresented in disability service use. This paper explores family experiences of using child disability support services to understand how migration and their cultural expectations about disability and service affect the way they use services. Qualitative semistructured interviews were conducted with 13 family carers in Sydney. They were striving to gain good support for their child from formal services. However, most of them were reluctant to express any dissatisfaction to service providers, which meant that assertively requesting different support was difficult and culturally inappropriate. In response, service providers can design nonconfrontational ways to elicit this vital information and support families to gain experience tackling conflict.