The Paradox of the Quality of Life of Adults with Learning Difficulties

This paper is based on an empirical survey conducted in 1995 in Hungary. Data came from a stratified random sample of about 1300 adults with learning difficulties from all over the country. The author combines qualitative and quantitative methods in analysing the quality of life of people with learning difficulties and takes into consideration that their quality of life is as much determined by sociological factors as by the biologically and educationally understood level of difficulties. The paper shows that success in education and in the labour market does not equate to successful social integration. The quality of life of adults with learning difficulties is sometimes better in social circumstances which are less favourable for high achievement in education and in the labour market. Though the people from more privileged backgrounds may seem to lead a more active and social everyday life than those with working class origins they are still considerably less integrated in their social environments.     

Sexuality as a Perceived Hazard in the Lives of Adults with Learning Difficulties

Qualitative research by the present authors has suggested that the management of hazards is a central issue for adults with learning difficulties (adults) and informal carers. This paper focuses on adult sexual relationships as a perceived hazard. Informal carers viewed such relationships as unacceptably dangerous. Those from 'danger avoiding' families, who had low risk tolerance, prohibited situations which might lead to a sexual relationship, e.g. privacy with a boy or girlfriend. Informal carers from 'limited risk taking' families gave adults more scope, e.g. to move freely round the locality, and were anxious that the adult, unsupervised, might become involved in a sexual relationship which he or she could not manage. Adult views about their own sexual relationships are analysed in these social contexts, and the implications for professional practice aimed at enhancing adult autonomy are briefly considered.     

A Comparative Approach to Evaluating Individual Planning for People with Learning Disabilities: challenging the assumptions

Individual planning in services for people with learning disabilities is used on the assumption that it encourages service users across a range of abilities to make important decisions about their lives. Although recent studies have questioned the value and effectiveness of such processes, the principles underlying the practice of individual planning are rarely challenged. This paper considers important aspects of individual planning in London, comparing a system based on the principles of normalisation with a situation-specific, family-orientated system operating in Milan, Italy. Key factors such as the role of professionals and the involvement of service users are considered with the aims of the process. The intention of the paper is to stimulate debate in an area of practice by questioning its assumptions.     

'Normal' Life in a Hazardous World: How Adults with Moderate Learning Difficulties and Their Carers Cope with Risks and Dangers

Semi-structured interviews were conducted with 20 adults with moderate learning difficulties attending Adult Training Centres and with their informal carers. Interviews covered friendships, relationships with the opposite sex, leisure and independent living and were analysed using a grounded theory approach. Ways of dealing with hazards emerged as an important theme. Hazards could be seen as dangers to be avoided or as risks to be calculated and minimised. Adults and informal carers usually viewed hazards in a similar way but there were conflicts of view in some families. Treating hazards as dangers to be avoided appeared to be associated with professional or skilled manual social background and the presence of both parents in the household.     

Using Autobiographical Approaches with People with Learning Difficulties

Biography and autobiography have been used in numerous ways to represent people with learning difficulties. In this paper we review a variety of approaches to biography and autobiography with people with learning difficulties, and discuss the roles researchers play. The paper ends with a discussion of the potential of autobiography as a means to change the power relationships in disability research.     

Service Learning with Rural Older Adults

Abstract

The purpose of this qualitative study was to examine the effects of a service-learning project with rural older adults on social work students' choice of working professionally with older adults upon graduation. Service learning is a course-based community service experience designed to enhance students' understanding of course content while meeting an identified community need at the same time. The service-learning intergenerational project consisted of ten hours of face-to-face interaction between a BSW student and an older adult living in rural South West Virginia and the city of Charleston. Twenty-one undergraduate social work students attending the Micro Practice course participated in the study. Data collection consisted of face-to-face interviews guided by a set of open-ended questions. Data analysis revealed that participation in the intergenerational project did not change a students' choice of major but it increased their desire to explore the field of aging.     

Helping People with Learning Difficulties into Paid Employment

Summary

Welfare to work policies have developed partly from policy rhetoric that argues employment as the best way of ensuring social inclusion for marginalised groups. In the United Kingdom, welfare to work policies for disabled people have developed within an enabling rather than a mandatory system, although organisation and practice have lagged behind. This article explores policies that provide this enabling context for facilitating the transition of people with learning difficulties from benefits to paid employment. It also explores the role of social workers, examining the degree to which their practice reflects the empowering rhetoric of the policy framework and of contemporary social work values.     

The Ethics of Research With Men who Have Learning Disabilities and Abusive Sexual Behaviour: a minefield in a vacuum

In the wake of the recent awareness of the sexual abuse of people with learning disabilities is the recognition that a small number of men with learning disabilities are themselves sexually abusing. The need to understand the men's behaviour and provide effective responses is pressing yet the search for an ethical course of enquiry appears illusory. The two conflicting dilemmas which make this task so difficult are whether the men's learning disabilities preclude their giving informed consent to the research process, and/or whether men who are sexually abusing have lost some rights to exclude themselves from research which is intended to prevent further abuse. This paper explores in depth these dilemmas and describes the authors' attempts to resolve them as they attempted to devise a protocol for consent to involvement in a qualitative study of men with learning disabilities who sexually abuse. Issues raised in this particular context have relevance to many other issues in learning disability services where robust ethical debate is needed, but often glossed over.     

Professional/client Relationships: Creating a 'Working Alliance' with People with Learning Difficulties

People labelled as mentally handicapped are perhaps the last amongst the various client groups to be considered as autonomous individuals with a say in their own destinies. There is growing pressure on professionals in all fields to relinquish power and control and recognise the inherent problems of attitudes and practices which promote rather than reduce dependency in clients. Even where client groups are recognised as independent and effective members of society, there are strong resistances to this changing professional role. Where severe learning difficulties are involved, the resistances do not arise just from clinging to older, more comfortable attitudes and practices, but also from a genuine uncertainty about how to proceed. The principle of normalisation does not seem to translate easily into new modes of professional/client interaction.

This paper sets professional/client relationships in their immediate historical context and considers how interpretations of normalisation seem to confirm rather than conflict with established professional assumptions. Some approaches are suggested which may help in structuring and supporting a process of change from dependency-inducing relationships to a 'working alliance'.     

Parents with a Learning Disability: research issues and informed practice

This paper commences with an examination of the concept of parenting and then applies its findings to parents who have a learning disability. It is argued that views on parenting, drawn from mainstream developmental psychology from parents who do not have a learning disability can inform our thinking about parents who do have a learning disability and provide an agenda for future research. In particular, we look at skills-based approaches to parenting, parenting as a motivated activity, cultural and historical factors influencing parenting, and lay views on children and childhood. The conclusion was reached that, although an audit of what people with a learning disability believe and expect about children is valuable research, the critical issue is how this knowledge is applied in parenting practice.     

Self-advocacy for People with Learning Difficulties: Does it have a future?

Within such a short-time self-advocacy has become not only fashionable amongst organisations of people with learning difficulties, but also with service providers and non-disabled individuals who have worked in traditional services. The concerns are that self-advocacy has become a process of consulting with users about what they want from services which are usually designed and delivered by non-disabled people. This had led to people recognising and accepting choices that are on offer by non-disabled people. As a consequence an artificial boundary around self-advocacy has been created which has led to people only speaking up about what society is prepared to make available (usually in form of segregated and supervised services) rather than challenging the (lack of) power that people with learning difficulties have in their lives. For people with learning difficulties to gain real change in their personal lives self-advocacy needs to be developed to ensure they not only have the communication skills, but have an appreciation of the importance of changing rules, policies and laws which institutions, local authorities and Governments make to ensure their rights are protected. If they have an appreciation of laws and policies it will result in real change and self-advocacy won't be a tool for service providers. Also, self-advocacy must include speaking up about alternatives to choices being offered, recognising the importance of supporting one another in common areas of concern and to challenge the political system to legislate to provide relevant changes. I have developed a self-advocacy framework model which includes all the elements needed to advocate and achieve permanent change.     

Accentuate the Positive: A Personal Profile of a Parent with Learning Difficulties

This paper uses case material from a research study of parents with learning difficulties to show why parental competence can only be assessed in the context of people's lives and upbringing. Drawing on the ideas of futures planning, a distinction is made between a 'deficiency perspective' and a 'capacity perspective' on personal development. These two perspectives are applied to the analysis of the personal profile of a parent with learning difficulties. The results present a challenge to the presumption of incompetence that often informs the professional response to parenting by people with learning difficulties.     

The Dearing Report and Students with Disabilities and Learning Difficulties

The movement to promote improved levels of participation from groups under-represented in higher education which occurred between 1980 and 1990 neglected disabled people. The position has been addressed by the national higher education funding councils since 1992 and progress has been made. Therefore, it was surprising to find that, whilst certain social groups were highlighted, nothing was said about disabled people in the terms of reference of Sir Ron Dearing's National Committee of Inquiry. This paper describes attempts made to inform and influence the Committee. Next, it considers the Report itself. First, the recommendations for future policy which are directed specifically towards disabled people are discussed; secondly, the potential implications for disabled people of the general recommendations are explored; and thirdly, the supplementary report on students with disabilities is reviewed. The conclusion provides a brief overview of developments since the Report's publication.     

'A Feeling of Being Connected': Friendships between People with and without Learning Difficulties

Recently, programmatic attempts to encourage close ties between people with learning difficulties and typical citizens have increased. It is believed that such relationships will extend the assimilation of people with learning difficulties into society. The researcher presents the perspectives of four pairs of friends about the meaning of their friendships. The informants shared similar ideas and expectations about the characteristics of friendship in general. These included its mutual, exclusive, and voluntary nature; the rights, obligations, and responsibilities of friends to each other; and the positive regard or affection found between friends. Despite efforts on the part of service providers to support the development of friendship between people with and without learning difficulties, the biggest barriers for the individuals in this study were the practices of the human service system, which curtailed opportunities for people which would have promoted the development and maintenance of friendships.     

Some Ethical and Methodological Issues in Research with People with Learning Difficulties

This paper discusses some ethical and methodological issues which arose in a recent study examining the exercise of choice by people with learning difficulties. The research aimed to examine in detail the choice-making process, and to explore ways of involving people with learning difficulties both as respondents and as contributors to the study design. Various dilemmas were encountered-including how to gain informed consent from people with profound impairment, the risk of intrusion when conducting research in people's own homes, and the dangers of raising expectations of continuing friendship. The importance of accountability when analysing data and disseminating findings is highlighted. A Research Advisory Group, including two people with learning difficulties, was set up to give guidance on the study. Steps were taken, but not enough, to facilitate their involvement in the meetings. Reflecting on experience gained in this study and on research reported elsewhere, a number of pointers for future research are drawn. These include the need to consider the potential implications of intellectual impairment for involvement in the research process.