Personal assistance from family members as an unwanted situation,an optimal solution or an additional good? The Swedish example

The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people’s control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families.     

Creating employment opportunities for people with disabilities in healthcare: the Bristol Employment Collaborative

Unemployment is a significant problem among working-age adults with disabilities. The Bristol Employment Collaborative (BEC), one of five Regional Employment Collaboratives in Massachusetts, brings together State agencies, community employment service providers, educational institutions, local businesses, economic development organizations, and people with disabilities to design and implement regional strategies to enhance employment opportunities and outcomes for people with disabilities. Launched in 2009, BEC has developed an innovative model to train people with disabilities to become personal assistance services workers, a healthcare occupation with high demand. The case study describes the strategic planning process undertaken by BEC partners to develop a certificate program to be offered by the local community college. The first class enrolled in September 2010 and graduated ten weeks later. Innovative approaches such as the one being pursued and developed by the BEC could help address both unemployment for people with disabilities and the labor shortages in the healthcare sector.     

Intellectual disabilities,violent conflict and humanitarian assistance: advocacy of the forgotten

This article examines the experiences of people with intellectual disabilities in violent conflict who have been neglected in practice and academia. Such invisibility, combined with the disabling impact of society, their low priority, and the nature of their impairments, results in a disproportionately negative impact of conflict on people with intellectual disabilities. Drawing on a wide range of sources, including humanitarian workers, this article examines their experiences and analyses how much consideration has been given to people with intellectual disabilities in humanitarian assistance policy and practice in light of their increased need and vulnerability. Lack of awareness and recognition of their diverse experiences can result in their needs failing to be adequately met, which compounds their disproportionately negative experience of conflict. It is important to finally start paying attention in order to ensure their inclusion in humanitarian responses.     

Development Assistance: disability and education in Southern Africa

This paper discusses development assistance on disability and education in southern Africa. Development assistance for people with disabilities has for a long time been based on the charity and medical models. It has not been perceived in the context of national development. Many development agencies and charitable organisations tend to emphasise their own agenda, which may not necessarily be that of the local people with disabilities. As a result, the anticipated impact of development assistance in the region for people with disabilities has not been realised. This paper challenges this position and advocates for a more participatory approach by the locals. Using Lesotho as an example, the paper shows how development assistance can be made to be more successful through community participation and change of attitudes across all sectors of the community.     

Personal Assistance for People with Intellectual Impairments: experiences and dilemmas

The article gives an account of how personal assistance is adapted to people with intellectual impairments in Norway and the experiences with the arrangement for this target group. Most space, however, is given to a discussion of the challenges and dilemmas of including people with intellectual impairments in the target group for personal assistance, since other people than the user as a rule fill the role as manager of the service. Special attention is paid to the parents' role since they often act as managers on behalf of their sons/daughters. Furthermore, the assistants' role is discussed and the importance of how they meet the users. Finally, there is a discussion of the consequences the extension of personal assistance to intellectually impaired users might have both for personal assistance as a service and for the ordinary care services.     

Variations in provider capacity to offer accessible health care for people with disabilities

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

Experiences of families with relatives with intellectual and developmental disabilities in a consumer-directed support program

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer-directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts and changes. This context provided a rich environment to explore the benefits of the program, as well as oppressive forces creating barriers to the control of financial resources by individuals with disabilities and their families. Financial benefits, benefits from respite and personal assistance services and prevention of undesirable institutional placements were major themes that emerged and triangulated with previous research. The following themes emerged concerning barriers to the control of financial resources: provider and professional control, disability as a deserving group, fraud and abuse perceptions and familism. These themes appear to fit well within a social model of disability applied to the family.     

Variations in Provider Capacity to Offer Accessible Health Care for People with Disabilities

Abstract

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

It takes two to tango: the integration of people with disabilities into society

The concept of integration is not well defined. It not known how people with disabilities experience integration. In this study qualitative methods were used. The aim of the article is to define a model of successful integration based on the perspectives of people with disabilities and people within their social environment. Integration consists of five elements: functioning ordinarily without receiving special attention, mixing with others that are not disabled, taking part in society, trying to realize one’s potential and directing one’s own life. Integration is obtained through a process of interaction between a person with a disability and society. This process is influenced by personal, societal and support factors. The individual with a disability and society have a mutual responsibility with respect to integration.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

Negotiating independence,choice and autonomy: experiences of parents who coordinate personal assistance on behalf of their adult son or daughter

Article 19 of the UN Convention on the Rights of Persons with Disabilities requires states to provide personal assistance services. This article is based on qualitative research in Iceland, Norway and Sweden, carried out between 2012 and 2013. The overall study focused broadly on the implementation of Article 19. This article, however, reports findings based on a particular group of participants within the larger study: non-disabled parents who coordinate personal assistance schemes for their adult son or daughter. The article examines the various ways in which the parents, the majority of whom were mothers, negotiate principles of independence, choice and autonomy for their adult son or daughter who requires intensive support, including assistance with communicating. The aim is to explore, in the context of the Convention and the principles of the independent living movement, how to acknowledge and conceptualise personal assistance schemes that require another person to manage on behalf of the user.     

Youth leadership program for changing self-image and attitude toward people with disabilities

Society has a negative attitude toward people with intellectual disabilities or psychiatric disabilities. It is well documented that they are subjected to prejudice, stigma, and negative attitudes (Di Giulio, 2003 ; Finger, 1994 ). Professional literature indicates that information about disabilities and encounters with persons with disabilities can change negative attitudes (Carter, Hughes, Copeland, & Breen, 2001 ; Krajewski & Flaherty, 2000 ). This study accompanied 164 9th-grade students from various junior high schools throughout Israel. Half of the students participated in an integration program for changing attitudes toward persons with disabilities, and the other half served as the control group. The research examined the existence and the degree of relationship between participation in the program, changes in attitudes toward people with disabilities, and self-image. The research findings pointed to a positive change in attitudes of the participants of the program in comparison with the control group, resulting mainly from personal contact with people with disabilities. No relationship was found between levels of self-image of the research group and attitudes toward people with disabilities.     

‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities

Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.     

Listening to Young People with Learning Disabilities Who Have Experienced,or Are at Risk of,Child Sexual Exploitation in the UK

This paper reports on a UK study which examined the identification of, and support for young people with learning disabilities who experience, or are at risk of, child sexual exploitation (CSE). CSE has received considerable attention in the UK, with evidence suggesting an increased risk for young people with learning disabilities. However, no study has specifically focused on this group, and their voices remain largely unheard. In‐depth interviews with 27 young people with learning disabilities were undertaken to explore how to meet their needs. This paper presents the young people's voices and identifies areas for improvements in policy and practice.     

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.     

A Systems Approach to Social Entrepreneurship

Currently, disabilities organizations are increasingly being challenged by the requirement for individualized service, expectations to show personal outcomes, and the need to base their services on evidence-based practices. Social entrepreneurship (SE) is being put forward as an innovative approach for dealing with these challenges. This article presents a systems approach to SE based on a program logic model. This model identifies the input factors (a strong social vision, exploiting opportunities, maximizing resources), throughput strategies (entrepreneurial orientation, critical thinking skills, networking, capacity building), and outcome components (improving people’s lives, community-building, improving society) of SE at the micro, meso, and macro level. Also, the importance of planning for contextual changes as a social entrepreneur is discussed. The article concludes with presenting three inspiring practices regarding SE in the field of disabilities organizations.     

Personal assistance—direct payments or alternative public service. Does it matter for the promotion of user control?

Personal assistance organised as direct payments is seen as an important means for securing user control and freeing disabled people from their reliance on welfare professionals and unpaid carers. The hypothesis put forward in the article is that just looking at whether personal assistance is organised as direct payments or as an alternative service represents an overly restricted approach to judge how the user’s preferences are taken care of. By comparing models of personal assistance in the US, the UK, Sweden and Norway it will show that several other factors influence user control. In the final part of the article the question is raised as to whether paternalism is always negative for welfare service users. Since the users constitute a broad group it might be questioned if the assumption of the service users as rational, well informed and competent to make the best choices is always valid.     

Perspectives of Young People in Care About their School-to-Work Transition

Abstract

Achieving in education and employment has long-term effects on quality of life. With below-average levels of educational attainment, many young people in care are ill-equipped for the transition from school to further education and work. This paper presents findings from a qualitative study that explored the school to work transition experiences of young people currently or previously in care, and their ideas about future employment. A range of personal and contextual factors that influence study and work goals were identified. Young people spoke about the importance of personal confidence and determination, supportive relationships, someone to believe in them and encourage them, opportunities to pursue their goals, avenues to gain information about how to get desired jobs, positive school experiences, and the need for stability in their lives. The study suggests widening the agenda for case planning, transition from care and after-care support, to include career planning and vocational assistance.     

Reluctant participation – the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance

The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.     

Cash payments in context: (self-)regulation in the new social relations of assistance

Cash payments to meet social care needs offer the possibility for the direct employment of personal assistants using public funds. Empirical work internationally has identified the benefits of cash payments. However, there has been less interest in the relationships between employers and their employees. This article offers some reflections upon the employment relationship from the perspectives of employers who have learning difficulties and their personal assistants. The study involved eight employers, their supporters and their personal assistants in an English city. A grounded theory approach was utilised and interviews were analysed using a framework approach. This article argues that the relational aspects of direct employment arrangements have not been adequately considered in academic literature and the policy framework. These insights can add to debates around how social care support mechanisms can offer responsive assistance whilst questioning the assumed ‘empowering’ effect of an unregulated market.