This book contains a series of articles, written by international experts in the fields of intellectual disability and quality of life, that explore a broad range of issues that impact on the quality of life of people with intellectual disabilities and their families. The book commences with a general discussion on defining quality of life and family quality of life and the appropriateness of using these constructs in the field of intellectual disability, and is followed by an analysis on the effects of living arrangements and employment on quality of life. The book concludes with discussions on the unique issues facing children with intellectual disabilities and people living in developing countries and the effect these issues have upon their quality of life.
Interest in quality of life has increased considerably over recent years and is now making considerable impact amongst all practitioners concerned with people with disabilities. This book looks critically at the concepts, assessment and practice as they relate to quality of life issues in many fields of disability. The issues for professional training and practice are evaluated and the benefits of involvement in creative activities are examined. Vocational, social and leisure implications for quality of life considerations are also explored in a number of chapters. Case studies and examples are used throughout the book to make this edition accessible and of real practical use to all those working with people with disabilities.
This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics.
A refreshing book that can hold the reader's interest throughout. Quality of Life and Disability should be a compulsory text for all students in the disability field and would make a useful one for experienced practitioners including social workers.' - Australian Social Work 'Among the recent proliferation of books on quality of life, this is a standout! Not only is Quality of Life and Disability: An Approach for Community Practitioners placed squarely in the disability field, but it has an applied emphasis that is rare for a topic that so abounds in vague and often conflicting theories and terminologies. Rather than burdening the reader with the conceptual conundrums of a construct as ambitious as whole of life quality, Brown and Brown dive into the real life issues. This quality of life text will appeal to many practitioners in the disability field. A welcome addition to the bookshelves of many practitioners.' - Paul Bramston, University of Southern Queensland, Australia 'Excellent guide demonstrating to practitioners, not only what they have to do to increase the quality of life of the people they look after, but also how they should start doing it.' - Wspolne Tematy 'A remarkably rich mixture of experience, guidance and insight into the determination of people's quality of life, and into ways in which a wide variety of care staff, managers and policy-makers can understand and respond to disabled people's wants and needs.' - Care and Health magazine 'One of the most refreshing approaches in the contemporary literature on quality of life and disability. The authors are to be congratulated for the very user friendly way the book has been designed.' - Trevor R. Parmenter, University of Sydney 'This book reflects the authors' extensive experience and admirable insight as they bring quality of life ideas closest to those who are in the best position to apply them - the practitioners. Useful, stimulating and well written.' - Robert L. Schalock, Hastings College, Nebraska 'The authors weave their text seamlessly, reminding us at every turn that quality of life varies across individuals, cultures and time... tightly-structured and practical.' - Patricia Noonan Walsh, University College, Dublin 'This excellent book is a valuable contribution to training literature in the field of community rehabilitation.' - Mitchell Clark, Mount Royal College, Calgary, Canada Quality of life - physical, psychological and environmental well-being - is a crucial consideration for professionals working with people with a disability. The authors of this practical book apply ideas about quality of life to the field of disability to assist front-line professionals, managers and policy-makers in effective service provision. They examine the historical context of the concept of quality of life and discuss the application of quality of life in the daily lives of people who have disabilities. Using recent studies to show how the development of quality of life approaches have led to changes in rehabilitation, and how an understanding of the issue can inform practice in assessment, intervention, management and policy, this is an indispensable book for all practitioners and managers working with people with disabilities.
The future of disability in America will depend on how well the U.S. prepares for and manages the demographic, fiscal, and technological developments that will unfold during the next two to three decades. Building upon two prior studies from the Institute of Medicine (the 1991 Institute of Medicine's report Disability in America and the 1997 report Enabling America), The Future of Disability in America examines both progress and concerns about continuing barriers that limit the independence, productivity, and participation in community life of people with disabilities. This book offers a comprehensive look at a wide range of issues, including the prevalence of disability across the lifespan; disability trends the role of assistive technology; barriers posed by health care and other facilities with inaccessible buildings, equipment, and information formats; the needs of young people moving from pediatric to adult health care and of adults experiencing premature aging and secondary health problems; selected issues in health care financing (e.g., risk adjusting payments to health plans, coverage of assistive technology); and the organizing and financing of disability-related research. The Future of Disability in America is an assessment of both principles and scientific evidence for disability policies and services. This book's recommendations propose steps to eliminate barriers and strengthen the evidence base for future public and private actions to reduce the impact of disability on individuals, families, and society.
Children and adults with profound and multiple learningdisabilities (PMLD) are among the most marginalised people insociety. They have some of the highest support needs and are mostreliant on services. This accessible text presents and promotescurrent best practice regarding interventions to meet the complexhealth needs of a person with profound & multiple learningdisabilities. Practical in focus, this text provides evidence-basedguidance on meeting the complex needs of a person with PMLD. The text presents a range of complex health needs that apractitioner may face, such as communication, nutrition, epilepsy,vision and mobility. Each practice-focused chapter provides cleardefinitions of the condition, with current evidence-basedbest-practice supporting the intervention. Written by a team of professionals who have wide experience andinterest in this subject area, this text will be invaluable for allthose working with, and caring for those with profound and multiplelearning disabilities.
It was over five years ago that the Centre for Medicines Research organized a workshop entitled "Quality of Life: Assessment and Application". This workshop brought together a unique group of participants, some of whom had been involved in studies on quality of life for well over a decade, whilst others were meeting the subject for the first time. This blend of experienced researchers and enthusiastic newcomers was a great stimulus to the discus sions which followed individual presentations as well as that resulting from the study groups. In the ensuing publication, a balance was sought between a consideration of the complex principles underlying the assessment of quality of life and the application of such assessments to specific clinical conditions which necessitated this approach. The organization in 1991 of a second workshop entitled "Quality of Life Assessment: Key Issues in the 1990s" resulted in a further consideration of the quality of life philosophy, concepts and key instruments together with an update on assessing quality of life in a number of major disease areas. Of particular importance was an examination of various viewpoints concerned with ethical questions and their implications, and quality oflife from industry, regulatory and health care purchasers' perspectives. As a result of this second workshop, the editors of the original book referred to above decided to produce a second edition with a number of updates and additional chapters.
The rubric "Quality of Life" first came to the explicit attention of the medical profession a little over thirty years ago. Despite the undoubted fact that each one of us has his or her own Quality of Life, be it good or bad, there is still no general agreement about its definition, or the manner in which it should be evaluated. Although much has been written about quality of life, this work has been largely concerned with population-based studies, especially in health policy & health economics. The importance of individual quality of life has been neglected, in part because of a failure to define quality of life itself with sufficient care, in part perhaps because of a belief that it is impossible to develop a meaningful method of measuring individual variables. It is a fundamental belief of the editors of this book that the primary focus of quality of life is & must continue to be the individual, who alone can define it & assess its changing personal significances. The individual perspective is of vital importance not only to patients but to their doctors too, & is more & more frequently proposed as the most meaningful measure of outcome in clinical research, especially in non-remitting or chronic conditions. Workers who wish to consider wider aspects of influences on the illnesses suffered by individuals & the health care that they receive will find much to stimulate them in the methods of documentation proposed in this book. Those mainly concerned with population samples rather than individuals may also find the sensitive methods of investigation proposed here not only to be applicable to their own areas of interest, but also rewarding in perhaps unexpected ways.
The World Report on Disability suggests more than a billion people totally experience disability. They generally have poorer health, lower education and fewer economic opportunities and higher rates of poverty than people without disabilities. This report provides the best available evidence about what works to overcome barriers to better care and services.
