Issues of Risk Practice and Welfare in Learning Disability Services

This article focuses on risk management in services for people with learning disabilities. It identifies the issue of risk as central to many historical and current care practices. It illustrates this through three examples that raise questions of risk in relationship to people with learning disabilities: on community care, alcohol and sexuality. It concludes that risk has often been negatively associated with danger, but that sensitive risk management has the potential to improve or maintain the quality of care services.     

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.     

Emancipation and Self-determination of People with Learning Disabilities and Down-sizing Institutional Care

In Arduin, an organisation for services to people with learning disabilities in the Netherlands, the emancipation and self-determination of people with learning disabilities has been positively adopted as fundamental in order to secure the best possible quality of life of the clients. The client is being encouraged in several ways in a development from a position of dependence towards self-determination. The services provided by the organisation had to be adjusted accordingly and are also going through a transition from 'providing a total care service' towards 'offering the support that the client desires'. In this article the background and developments in perception are being outlined, and those dimensions in quality of life are elaborated that are seen as most essential in the innovation: inclusion, self-determination and personal development. The choices that were made as a consequence in Arduin and most fundamental the choice to dismantle the institution are described.     

Family Placement Schemes Offering Long-term Care for Adults with Learning Disabilities: a review of the evaluation literature

This paper reviews evaluation studies of family placement schemes offering long-term care for adults with learning disabilities in Britain. The model is widely used, but there is very little research describing such schemes. It is suggested that evaluation is made difficult because the goals of placement schemes for people with learning disabilities are not made clear in the literature. A theoretical structure for evaluation based upon an ecological view of quality of life is suggested and research is reviewed within this model. Where possible, comparisons are made to American literature on similar models of care.     

The Learning Experience of Students with Disabilities in Higher Education. A case study of a UK university

This paper summarises the results of an investigation into the social and learning experiences of students with disabilities in a UK University. The students' experiences were evaluated in three broad areas: with respect to the categories used by the Higher Education Council to examine the quality of the learning experience for all students in higher education; against the issues conventionally included in studies and policy developments for independent living for people with disabilities; and in relation to the impact coming to university has on the lives of students with disabilities. The paper highlights the issues of central concern to students with disabilities in the University and draws some conclusions with policy implications from a discussion of student perception of services, the practical constraints facing the institution, and the social values which underpin the framework of support for students with disabilities in Higher Education in England and Wales.     

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.     

Employees with Long Term Illnesses or Disabilities in the UK Social Services Workforce

Between 6% and 16% of the working age population have a long term illness or disability. 'Disability' is not consistently defined, however, and neither the distribution of disabled employees nor the nature of their disabilities is well documented. This paper presents the findings of a study of statutory social services employees in the UK and for the first time provides an estimate of the proportion of workers with long term illnesses or disabilities. Over a fifth had a self-reported long term illness or disability, 8% a condition which affected daily life. The distribution and nature of these, and the effects of gender, age, occupational categories, and work experience such as job satisfaction, stress and sick leave, are examined. Changes in legislation and the profile of the working age population are likely to increase the number of people with disabilities in work. The paper concludes that at a time of difficulties with recruitment and retention, social services and other social care employers must develop a range of responses to support and retain the diversity of people with disabilities in work.     

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.     

Observing the Delivery of a Domiciliary Support Service

This paper describes a study of the work of domiciliary support services which have been developed under the All-Wales Strategy for services to people with learning difficulties. The study employed direct observation methodology to describe the pattern of activities of domiciliary support workers and their clients. Twenty-eight sessions were observed, with the work of the domiciliary support worker with each client being observed twice. The pattern of work observed broadly fell into four categories: physical care in the family home, sitting-in, support for skill development and support in community activities. The results revealed that while support workers worked with skill and sensitivity in the family home they require further guidance and support if they are to assist successfully in skill development and community integration activities.     

Good Intentions - Unpredictable Consequences

A commendable degree of success has been achieved in relocating people with learning disabilities from residential institutions into ordinary community settings. Nevertheless, a challenging task remains if people with all levels of learning disabilities are to be enabled to become meaningfully involved in ordinary community activities. The author argues that a structured day service has a vital role to play in this process, but that, unless the underlying problems that have continued to frustrate the development of a coherent national day care strategy are objectively reappraised and addressed, the true potential of the 'care in the community' policy will not only never be realised, but could actually become imperilled. This paper offers evidence to support the view that current policy trends are based on normalisation theories that, although sound and commendable in principle, have been misunderstood and misused. Consequently, the premises upon which these policy trends are based are fundamentally flawed.     

Using discourse analysis to study the experiences of women with learning disabilities

There has been a steady rise in interest in qualitative research methods in the area of learning disability over recent years. Discourse analysis has found relatively little use though, particularly in studying the experiences of people with learning disabilities directly, rather than the accounts of non-disabled informants. The present study used a discourse analytic approach in examining the accounts of women with learning disabilities, in order to arrive at an understanding how they position themselves in relation to gender and disability. The results indicate that, while the learning disability literature and services are largely ‘gender blind’, for women with learning disabilities gender and disability cannot be separated. Instead, they may be faced with marked contradictions and dilemmas when they position themselves within dominant discourses of gender, while also subject to powerful discourses of disability.     

Reviewing Respite Services: some lessons from the literature

Although the community care reforms raised the profile of respite services for adults with learning disabilities, little is known about the character of respite provision in Britain. This lack of information is compounded by the way the literature about respite is dispersed across user groups and is often restricted to particular types of services or to specific localities. In order to highlight some of the key issues associated with respite, this paper draws on a wide range of literature. Regardless of differences in terms of the service user groups, common themes are identified which are relevant to service planning and provision for adults with learning disabilities. The paper discusses these themes and argues that a break with the traditional notion of respite as primarily a way to relieve carer burden is long overdue. Adopting the perspective of the primary service users affords the opportunity to re-think respite services.     

Caring for people with intellectual disabilities in poor rural communities in Cambodia: experience from ADD International

The burden of care for a disabled relative traditionally falls on women: mothers, wives, sisters. In Cambodia, Khmer culture is strongly structured around the family unit within which both the role of women and discrimination towards people with disabilities are sanctioned by social hierarchy, perceptions of weakness, and the concept of karmic merit. This article explores the impact of ADD International's project in Cambodia to support people with ‘intellectual disabilities’ – that is, learning disabilities – and aims to assess how this work affected carers, the majority of whom were women.     

‘An Ordinary Sexual Life?’:A Review of the Normalisation Principle as It Applies to the Sexual Options of People with Learning Disabilities

This paper explains why the normalisation principle has had so little effect on the sexual options open to people with learning disabilities. It analyses discourses about services and about sexuality and suggests that one implicit role of services is the regulation of sexuality and the creation of sexual boundaries. The paper questions whether there are homogenous sexual values, and challenges the assumption that sexuality is 'natural' arguing that this view is simplistic and hides the extent to which rules about sexual behaviour are applied on the basis of social inequalities. Thus, the paper explores assumptions and ideologies about sexuality, normality and integration and reinstates all three concepts to a problematical status. It questions the ways in which people with learning disabilities are really free to be 'sexual' and the penalties they face in breaking out of the roles which have been prescribed for them.     

Whose ‘Ordinary Life’ Is It Anyway?

This paper offers a feminist critique of current community care policy and of the normalisation ideology which underpins it. Drawing on experience in services for people with learning difficulties and people who use mental health services, the authors draw a series of parallels between 'clients' and women in our society. They discuss the mechanisms whereby groups of people are accorded second class status and the ways in which such oppression is experienced. Strategies for change are discussed with reference to feminist scholarship and the development of the women's movement. The prevailing philosophy of normalisation, which is both apolitical and highly individualistic, is challenged to take more account of collective and communal ways forward and to acknowledge the interdependence of people who need care and their carers. Despite the rhetoric of community care, the work of carers (most of whom are women) is undervalued and unsupported. Mainstream values such as competitiveness and self-reliance are incompatible with the integration of people with disabilities and a theoretical framework which confronts such conflicts of interest is required.     

Comparing local and national service systems in social care Europe: framework and findings from the STEPS anti-discrimination learning disability project

This paper outlines the methodology and findings of a cross-national comparison of social care services for people with learning disabilities in Europe, developed from the EU funded STEPS anti-discrimination project. The comparative framework developed for the project is profiled and summary findings are organised into thematic dimensions. Wide variations in service organisation were evident, providing particular challenges for those involved in cross-national research or social work practice. Key variation was evident between local and national systems, the varying impact of generic and specialist community care and the degree of individualisation in services, with various structural, funding and policy barriers to integrated social work and ongoing de-institutionalisation evident. Development priorities for inclusive and anti-discriminatory practice included individual funding and planning, self-advocacy and user involvement in quality management.     

Reconstructing the Sexuality of Men with Learning Disabilities: empirical evidence and theoretical interpretations of need

Research and practice in sexuality and learning disability has directly and indirectly highlighted the pathological sexual behaviour of men with learning disabilities, particularly their abuse and exploitation of women with learning disabilities, and relatively high HIV risk sexual behaviour with men without learning disabilities. It is consequently argued that there has been a relative neglect of their wider sexuality and sexual needs. This paper reconstructs this wider agenda, drawing on empirical evidence and theoretical interpretations of need from research and sex education in support of the observations made. In identifying a range of key issues for sexuality work with men with learning disabilities and arguing that they require greater recognition and attention, the paper also provides directional pointers for informing such work and for responding more widely.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

Professional Ideology and Learning Disability: an analysis of internal conflict

Normalisation is the guiding principle for professionals who work with people with learning disabilities. However, professionals hold varying degrees of adherence to this prevailing orthodoxy. In addition, some professionals openly dispute its merits and adopt a more paternalistic perspective of people with learning disabilities. Consequently, their views are more similar to the parents of people with learning disabilities than to their professional colleagues. Based on ideological differences, these contradictory views create tension and potential conflict between professionals. This paper explores the ideological differences between professionals who follow the prevailing orthodoxy, identified in the study as 'normalisers', and professionals who adhere to a superseded ideology, identified as 'paternalists'. Similar to the problematic relationship between parents and professionals, a solution to the internal conflict of professionals may also be found in seeking a shared ideology of care.     

The implications of disability protests for social work practice

This article examines the demands which have been made in the over 800 US protests this author has analyzed. Some demands are cross-disability, meaning they could apply to people with all types of impairments; these include demands for rights and accessibility in all domains. Other demands are disability-specific: they apply to people with specific types of impairments, ranging from mobility impairments to developmental disabilities. Many demands have been related to services, which can be either cross-disability or disability-specific. The paper examines the implications of these demands for social work practice. These include that disability be de-stigmatized by practitioners, that people with disabilities have choices, that they have control over their services, and that all aspects of social work practice be accessible to people with any type of disability.