Personal assistance: what happens to the arrangement when the number of users increases and new user groups are included?

Using data from two representative surveys among the users of personal assistance in Norway carried out in 2002 and 2010, this paper examines developments and consequences of a strong increase of users and an extension of the target group. Users with mobility impairments still dominate, but the proportion of people with intellectual impairments, brain injuries, and sensory impairments have increased. The ‘new' users seem to be allocated fewer hours compared with those who received personal assistance at the early stages of the arrangement. Still, most users experience an increase in their welfare arrangements, as compared with the situation before they received personal assistance. The user control of the arrangement seems to be preserved, but it takes more different forms. For a higher proportion of users, one of their relatives or a guardian acts as a manager of the assistance.     

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.     

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.     

Personal assistance in Sweden

This article provides an overview of the Swedish personal assistance program for persons with severe impairments, introduced in 1994. The personal assistance program makes it financially possible for people with severe disabilities to appoint a personal assistant, by themselves or through a provider, to create support adapted to the individual and to optimize the person's influence over how the support is arranged. The article describes how the reform has increased the opportunity for people with severe disabilities to choose their own way of living. Overall, the personal assistance has enhanced the quality of life for people with severe disabilities and their families.     

Role-played interviews with service users in preparation for social work practice: exploring students’ and service users’ experience of co-produced workshops

Abstract

Within a Theory and Practice of Social Work module, prior to embarking on practice placements, social work students practised professional communication skills with people who had used social work services. They undertook role-played interviews with service users about real issues, which had led individuals to seek assistance in the past. Using principles of co-production, the workshop was developed in partnership with members of the University’s social work service users and carers’ group. Care was taken to safeguard service users’ well-being, as well as developing an effective learning opportunity. Drawing on evaluations by students and feedback from service users, this paper discusses the process of planning and delivering the workshops, as well as perceived outcomes for both groups. Findings indicate that students valued the opportunity to engage with service users, gaining key learning about their own practice skills. Service users described a boost to self-esteem through contributing to students’ learning. The workshop provides an example of how service user involvement in social work education has evolved from a primary focus on sharing personal testimonies to active participation in student skill development. It underlines the importance of investment in service user involvement to achieve an appropriate context for such projects to develop.     

Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.     

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.     

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.     

Trust,uncertainty and identity in health-related decision-making: the role of key professionals

There is a growing literature examining the way service users make choices in the context of complex and frequently changing forms of welfare provision and increasingly personalised services in England. Despite criticisms of the individualistic, consumerist assumptions underpinning these policies, little is known about the relational contexts of individuals’ lives and the role of professional support in choice-making. Drawing on interviews with ‘key professionals’, identified by service users as having played a crucial role in recent important choices, this paper explores how these choices are made with the support of those who are trusted to provide assistance. Placing ‘key professionals’ at the centre of the analysis, the distinct experiences of people with fluctuating and sudden-onset health conditions are examined. The analysis highlights the particular value of relationships that pay close attention to transitional health identities and the co-production of health-related decisions.     

COMMENTARY (12 YEARS ON) ON ‘THE CONTRIBUTION OF OBSERVATION TRAINING TO PROFESSIONAL DEVELOPMENT IN SOCIAL WORK’ BY JUDITH TROWELL AND GILLIAN MILES

This article aims to stimulate discussion about relationships between the lives of professionals and of service users. The idea is that when parallels are explored and developed, power dynamics between professionals and social workers are reduced, the quality of interaction and work with service users can be improved, and professionals can also be helped in overcoming difficulties in their own lives. I start with an outline of my own personal background and highlight my development throughout, including my emerging identity as a Buddhist. I discuss a case study involving ‘Sally’ and her family and our work together while I was a social work assistant in a Children and Family's team. I try to show the interconnections between the different difficulties that we faced and how that informed my work. I look at some of the benefits, pitfalls and boundaries of working from the point of view that service user and professional are both working to overcome their problems. I also interweave interactions I had at the time with Carlos, a drug user friend in a crisis and the impact he had on me. Because I include my own situation I have called this article a ‘case experience’.

Throughout I refer to Buddhist and psychoanalytic thinking and particularly to agreement between the two around ideas that inner‐resistance is the main barrier to personal evolution. I argue that faith is the key to unlocking resistance, and that faith should be understood as the development of a belief within people that they are able to progress rather than be destroyed in the face of inevitable problems.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

Facilitated Sex and the Concept of Sexual Need: disabled students and their personal assistants

This paper explores the complex issue of facilitated sex, an issue that has received very little attention by the disability movement. It draws on a small, qualitative study of a personal assistance scheme in a British University, and on interviews and correspondence with disabled students and personal assistants. The paper discusses the way in which disabled students define their sexuality as a 'need', but highlights how this view is not shared by those providing assistance. Personal assistants are more inclined to define sexuality as a sexual 'want' and to conflate physical impairment with either asexuality or a limited potential for sexual activity. The discussion concludes by suggesting that, whilst the issue of facilitated sex is morally complex, the sexual needs of disabled people are more likely to be met if the issues of sexuality and facilitated sex can be discussed and negotiated, in a frank and open manner.     

‘Privacy does not interest me’. A comparative analysis of photo sharing on Instagram and Blipfoto

Photo sharing online has become immensely popular and is a central aspect of modern visual culture. Yet it creates a number of privacy issues, both in relation to other individuals and corporate surveillance. The purpose of this study was to investigate users’ understanding of privacy issues in photo sharing, based on a comparative study of two contrasting platforms: Instagram and Blipfoto. The study combined netnography and in-depth interviewing. It was found that Instagram users had a greater awareness of how the platform might use their data, but saw this loss of privacy as inevitable in return for a free service. Blipfoto users were more trusting of what they experienced as a very community minded platform. Any concerns felt by both groups of users were out-weighed by the sense that photo sharing was highly meaningful and their fascination with watching and being watched. Both groups main approach to privacy was through restricting certain types of image of people and not revealing the location of certain personal spaces. Notions of privacy thus remained primarily personal and ignored corporate dataveillance.     

Beneficiary Work: The Hidden Labor of Medicaid Users Pursuing Cross-State Moves

For users of Medicaid personal care assistance (PCA) services and their families, interstate variation in eligibility and service availability act as structural barriers to cross-state movement. However, program users desire and pursue cross-state moves. In this article, we provide a grounded theory analysis of 18 interviews with Medicaid PCA users with physical disabilities who expressed desire for or pursued cross-state moves. Our analysis identified six forms of previously unnamed and unrecognized work. As PCA users plan or pursue cross-state moves, they are also (1) assessing service ecosystems, (2) finding the right door, (3) persisting through the bureaucratic gauntlet, (4) advocating for systems cooperation, (5) reestablishing networks of support, and (6) responding to service gaps/lapses. Collectively, we describe this hidden labor as beneficiary work, the unremunerated work that program users must do in order to retain access to benefits for which they qualify. Beneficiary work, while hidden, is not optional; it is necessary for continued access to community and broadly, for survival. Identifying and describing beneficiary work expands on Feminist and interactionist perspectives on disability, poverty, and work, and highlights the need for changes to Medicaid policy that address PCA users as mobile citizens.     

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.     

Promises and Pitfalls: Involving Service Users and Carers in Social Work Manager Education

Partnership working occupies an increasing amount of social work managers' time and budget, requiring skills and abilities not always developed previously within social work programmes. Much discussion around partnership working centres on building collaborative inter-agency and inter-professional relationships with less emphasis on the need to ensure good working relationships with service users and carers, despite their being the ultimate recipients of the process. This article explores efforts to develop a focus on service users and carers within a module for social work managers as part of post-qualifying (PQ) social work education. It documents a process where, initially, service users and carers provided personal testimonies of being recipients of services and then subsequently occupied more authoritative roles within teaching, to the current position when they are again less actively involved.

In describing these developments it explores possible reasons why involving service users and carers within this module has proved challenging. The article acknowledges that there is relatively limited literature about the involvement of service users and carers in PQ education. It suggests that lessons learned from involving service users and carers in qualifying social work training cannot directly be transposed to the post-qualifying context.     

How do adults with intellectual disabilities use Facebook?

Social networking sites have potential to support social relationships and self-determination of people with intellectual disabilities. However, to date, this issue has received little research attention. To help address this need, we conducted an online research survey to reach adults with intellectual disabilities who use Facebook and to include their voices about their online experiences, challenges, and preferences. We used mixed methods for data collection and analysis. Results from 58 respondents indicated that they use Facebook much as non-disabled users do to connect with family members and real-world friends. At the same time, the respondents reported challenges such as privacy setting and literacy demands. We discuss these findings and how to make social networking sites more accessible for users with intellectual disabilities.     

'They don't quite fit the way we organise our services'—results from a UK field study of marginalised groups and dementia care

The accessibility of dementia services to two groups of marginalised service users (people under 65 years of age and people from minority ethnic groups) was examined as part of a UK field study. In 61 interviews with a purposeful sample of professionals and paid carers in dementia care, the main issue in service access related to the small numbers of potential service users and their geographical dispersal. Other issues reflected those faced by people with dementia in general. At present, it seems as though decisions on care are based mainly on financial considerations and perceptions of the risk and dangerousness posed by people with dementia. These findings are linked to broader debates within the social model of disability about the need to address issues relating to people with learning impairments.     

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.     

Development of Parenting Skills in Individuals with an Intellectual Impairment: an epigenetic explanation

Current changes in legislation in the United States support the rights of individuals with an intellectual impairment to marry and have children. Current societal views, however, are heavily influenced by our history of viewing these individuals as inadequate parents. This historical view is based upon the assumption that those with intellectual impairments are genetically inferior. Changing views of development, however, suggest that the issue of how individuals with intellectual impairments develop is somewhat more complex. The epigenetic model is one that proposes that development is the result of the complex transaction between the individual and the environment. This paper applies this model to persons with an intellectual impairment to better understand the parenting skills they display. It is argued that by intervening and changing developmental pathways, the development of parenting skills of those with intellectual impairments can be facilitated.