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.     

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.     

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.     

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 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.     

The crisis of local authority funding and its implications for independent living for disabled people in the United Kingdom

The recent financial collapse of Northamptonshire County Council sets a worrying precedent for local authorities in the United Kingdom, and in particular for disabled people who depend on services provided by local authorities, such as Direct Payments for personal assistance, for their daily living needs. While the Northamptonshire situation has been blamed on financial incompetence, we argue that it has deeper roots in austerity policies implemented by Conservative-led governments since 2010 on a national level. We also argue that the placement of responsibility for funding personal assistance services in the hands of local authorities creates a deeply unjust ‘postcode lottery’ for disabled people, and we call for a national right to all services necessary for independent living, regardless of cost.     

Estimating the expense of a mandatory home-and community-based personal assistance services benefit under Medicaid

Personal assistance services (PAS) are essential for many people of all ages with significant disabilities, but these services are not always available to individuals at home or in the community, in large part due to a significant bias toward institutions in the Medicaid program. This study aims to provide an estimate of the expense of a mandatory personal assistance services (PAS) benefit under Medicaid for persons with low incomes, low assets, and significant disability. DESIGN AND METHODS: We use year 2003 data from the Survey of Income and Program Participation to estimate the number of people living in households who would be eligible, based on having an institutional level of need and meeting financial criteria for low income and low assets, combined with additional survey data on annual expenditures under Medicaid programs providing PAS. RESULTS: New expenditures for PAS are estimated to be $1.4-$3.7 billion per year (in 2006 dollars), depending on the rate of participation, for up to half a million new recipients, more than a third of whom would be ages 65 and older. These estimated expenditures are a tenth of those estimated by the Congressional Budget Office for implementing the Medicaid Community-Based Attendant Services and Supports Act (MiCASSA). IMPLICATIONS: Creating a mandatory PAS benefit for those with an institutional level of need is a fiscally achievable policy strategy to redress the imbalance between institutional and community-based services under Medicaid.     

Disabled or differently-enabled? Dyslexic identities in online forum postings

This study presents a novel exploration into how people with dyslexia construct personal identities within anonymous, unsolicited, postings to an online discussion forum. An interpretational phenomenological analysis suggested three key identities: learning-disabled, differently-enabled and societally-disabled. These are discussed in terms of the extent to which they draw differentially on a discourse of disability as opposed to one of individual difference. The identities are to an extent malleable and overlapping according to context. Postings suggested overall that while some contributors constructed themselves as differently-enabled and celebrated dyslexia-related abilities, others sensed themselves having a disabled identity imposed upon them. Dyslexia is perceived as negatively construed within a society which promotes literacy and cognitive acuity as essential aspects of educational and social competence and where learning differences are poorly tolerated. In addition, this study highlights the potential of online forum contributions in the study of social influences in under-researched groups.     

A Question of Friendship: Community Care and the Relationships of People with Learning Difficulties

There is evidence that a number of people with learning difficulties living in the community do not enjoy a range of satisfactory social relationships. This paper will examine the way that the issue of the apparent loneliness of people with learning difficulties has been approached in the community care literature. I will argue that there is a clear assumption in much of the literature that friendships between disabled and non-disabled people are of greater value than those relationships between disabled people. The low value accorded to friendships between disabled people is very damaging to their individual self-esteem, as well as to the possibility of political action based on a sense of solidarity. The paper will point also to the constraints that many people with learning difficulties face which render it difficult for them to form friendships and, therefore, reinforce their isolation.     

Personal assistance services as a workplace accommodation

This paper describes current US trends and practices regarding workplace personal assistance services (PAS) as part of available work accommodation options. Workplace PAS include task-related assistance at work, such as readers, interpreters, help with lifting or reaching, re-assignment of non-essential duties to co-workers, and other help related to performing work tasks; and personal care-related assistance such as helping someone with using the rest room, eating, or drinking while at work. The results reported here are based on forty-one telephone interviews conducted in 2004, which included 20 workplace PAS users and 21 US employers familiar with workplace accommodations. Employers and consumers described a range of workplace personal assistance currently used. Barriers to expansion of workplace PAS include negative co-worker or supervisor attitude, cost to employers and workers, waiting time for accommodations, employee attitude and knowledge, and confusing terminology. Development of organizational culture that encourages employment of people with disabilities and developing employer-employee partnerships in arranging for accommodations can contribute to workplace PAS solutions. The survey findings contribute to better understanding of current practices related to workplace PAS.     

Representing the Views of Disabled People in Community Care Planning

The 1990 NHS and Community Care Act requires social services departments in Britain to involve representatives of service users in the preparation of their annual community care plans. This paper gives a critical account of the different ways in which the views of disabled people are sought and represented in community care planning; and of the organisational and practical barriers which disabled people and their organisations are likely to encounter in representing their views to service planners. People with learning disabilities, older disabled people, people with sensory impairments and disabled people from Black and ethnic minority communities are particularly likely to be excluded from current consultation procedures. The paper concludes that present methods of representation place considerable burdens on both individual disabled people and on their organisations. Consequently, disabled people may increasingly question the effectiveness and usefulness of their involvement in community care planning, in the light of the many other issues which are important to them.     

The successes and challenges of implementing individualised funding and supports for disabled people: an Irish perspective

‘Individualised funding’, which is rooted in the Independent Living Movement, has formed part of a global paradigm shift in support services for disabled people. Against the backdrop of international experience, a political system aligned with the United Kingdom and emergent critics of individualised funding, this article presents findings from an evaluation of four pilot programmes in Ireland. Exemplified by independent-skills development and community integration, these initiatives have been welcomed as a progressive development beyond traditional service provision, with perceived improvements across a range of organisational, personal, health and social care domains. The article explores the importance of ‘natural supports’ and how overly protective behaviour may unintentionally act as a barrier to full implementation. The findings also indicate that unnecessarily complex systems can lead to individual burn-out. Furthermore, a national resource allocation system working in partnership with existing social care professionals and the wider community is recommended, as is learning from overly simplified, group-based ideologies.     

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.     

Conceptualising the psycho‐emotional aspects of disability and impairment: the distortion of personal and psychic boundaries

Recent feminist critics of the social model of disability have pointed towards a danger that disability studies may give relatively little attention to personal and emotional aspects of disablist oppression and impairment. We argue for consideration of the centrality of the distortion of personal and psychic boundaries as a key aspect of oppressive relational dynamics surrounding disability. Within the observer the disturbing psychic evocations of disability, and related defences, are connected to the maintenance of dynamics of unreal, collusory and alienating modes of relating, which may deprive disabled people of the recognition of subjective experience and personhood. Skewed socialisation of disabled people, involving inter alia the protection of the emotional lives of others, as well as the reality of inaccessible material resources, contributes to the internalisation of disablism and the ideological recruitment of disabled people as complicit in their marginalisation.     

State expenditures on home and community based services and use of formal and informal personal assistance: a multilevel analysis

Despite wide state variation in commitment to home and community-based services (HCBS) for functionally impaired older persons, little is known about how such variation affects older adults' strategies to compensate for their functional limitations. This study examines the association of state HCBS expenditures with use of formal and informal personal assistance among non-institutionalized older Americans aged 70 and older with functional limitations. We conducted multilevel multinomial logistic regression analysis using data from the first wave of the Assets and Health Dynamics among the Oldest Old Survey, combined with data on state HCBS expenditures. Controlling for individuals' demographic, socioeconomic, and care needs factors, persons residing in states with higher HCBS expenditures were more likely to use formal personal assistance, but not less likely to use informal assistance. Our study suggests state variation in HCBS expenditures leads to inequitable access to formal personal assistance, especially among those with high functional limitations.     

Financial assistance for families with severely disabled children and transport costs

Families with severely disabled children encounter many difficulties in getting out and about. The inadequacy of statutory financial assistance for transport related costs is confirmed by an analysis of families receiving grants from the Family Fund Trust. A third of the sample of 37 000 families with a severely disabled child, received grants for transport related costs. Such grants were more common for families with very young disabled children, children with particular diagnoses, or severely impaired motor function, sight and speech, and families whose children were dependent on technology, or who subsequently died. Recommendations for improving current statutory support are made. Copyright © 1999 John Wiley & Sons, Ltd.     

The role of mandates/philosophies in shaping interactions between disabled people and their support providers

Support provision is a personal and important element of daily life for many disabled people. This study examines the ways in which organisational mandates and philosophies shape interactions between disabled people and support providers at two unique organisations in Winnipeg, Canada: a L’Arche community for people with intellectual disabilities and an Independent Living Resource Centre. Data was collected through semi‐structured interviews with administrators at each location, disabled people using the services and support providers. The findings demonstrate that both organisations have strongly articulated philosophies that the participants are familiar with. The L’Arche model creates an environment that determines certain ways of interacting while the independent living participants amend the philosophy to reflect the daily reality of support provision.     

Reinterpreting learning difficulty: a professional and personal challenge?

I want to explore in this article the ways in which people with a learning difficulty are constructed in a number of ways as disabled, as limited, as being special, and so on. Constructions can also be utilised for different purposes – to ensure that they have effective levels of support and to elevate the status of people with a learning difficulty. Positive constructs may articulate an ‘accentuation of the positive’ as Goodley and Armstrong prescribed. However, whilst I agree with this sentiment, one echoed in Swain and French’s important formulation of an affirmative model of disability, and one that I have also espoused, professionally I also feel that my experience of working with people with learning difficulties makes me suspicious of generalised statements about people, even those deemed positive. This may be especially true in a period of financial rationalisation, where such constructs may seem inevitable in the fight for effective support for people with a learning difficulty.     

Workers' compensation for psychological injury: personal and environmental correlates

The aim of this study was to determine the personal and environmental factors that contribute to the lodging of a workers' compensation claim for psychological injury. Four groups were compared: individuals who had lodged a workers' compensation claim, people who had sought psychological assistance for the management of work-related stress reactions but who had not lodged a workers' compensation claim; people who had experienced stress symptoms but who had not lodged a claim or sought help; and people who experienced stressful work events but who had not developed symptoms. Examination was made of cognitive distortion, irrational beliefs and coping resources as individual factors, and stressful life events, daily hassles and work environment factors as environmental variables. The Compensation group was distinguished from other groups only on the basis of work environmental factors. The implications of these results in the understanding of the decision to lodge a workers' compensation claim are considered.