The concepts of quality of life and personal outcomes -- Quality domains and indicators -- Measuring personal outcomes: an information collection process -- Managerial strategies: opening the doors inward -- Personal outcome measures: values and metrics for an integrated management system -- Rationale for systems-level performance indicators that reflect personal outcomes -- Considerations in developing performance indicators at the macro level -- How do I use performance indicator data? -- Reframing quality and rethinking quality improvement -- Emerging challenges and opportunities.
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.
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.
This handbook offers a comprehensive review of intellectual disabilities (ID). It examines historical perspectives and foundational principles in the field. The handbook addresses philosophy of care for individuals with ID, as well as parent and professional issues and organizations, staffing, and working on multidisciplinary teams. Chapters explore issues of client protection, risk factors of ID, basic research issues, and legal concerns. In addition, chapters include information on evidence-based assessments and innovative treatments to address a variety of behaviors associated with ID. The handbook provides an in-depth analysis of comorbid physical disorders, such as cerebral palsy, epilepsy and seizures, and developmental coordination disorders (DCD), in relation to ID. Topics featured in this handbook include: Informed consent and the enablement of persons with ID. The responsible use of restraint and seclusion as a protective measure. Vocational training and job preparation programs that assist individuals with ID. Psychological and educational approaches to the treatment of aggression and tantrums. Emerging technologies that support learning for students with ID. Key sexuality and relationship issues that are faced by individuals with ID. Effective approaches to weight management for individuals with intellectual and developmental disabilities. The Handbook of Intellectual Disabilities is an essential reference for researchers, graduate students, clinicians and related therapists and professionals in clinical child and school psychology, pediatrics, social work, developmental psychology, behavioral therapy/rehabilitation, child and adolescent psychiatry, and special education.
We all long for a life of purpose and fulfillment. Striving for high quality of life for us and those we care for is a powerful motivator. Many busy people dream of being lazy by a pool fanned by a soft summer breeze, but this does not last. A short time of rest and replenishment is quickly replaced by boredom and a sense of purposelessness. Quality of life is much deeper than material comfort, though this has a role. Sadly in our world today, many people live lives lacking in meaning and value: the unemployed, the underemployed, those with disabilities who would like to contribute to society but are deprived the opportunity. Their quality of life is not what it could be. In this book, we have attempted to provide examples of how people face challenges, and the family members, professionals and care personnel who support them can be helped and supported through services working within a quality of life framework. The book provides a challenge to be addressed by the individual, their families, local communities, governments, international organizations and the society at large.
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.
A Comprehensive Guide for Parents and Caregivers As any parent or caregiver of an individual with developmental disabilities can tell you, planning for the future of an adult with intellectual disabilities, Cerebral Palsy, severe autism, or another such condition requires hard work and good advice. While complete independence and self-reliance is out of reach for many adults with developmental disabilities, a productive, stable, and enjoyable life is certainly possible. But government and private support for parents and disabled individualsis scattered and difficult to negotiate. This book is a comprehensive guide to resources you can use to help an adult child or other individual with developmental disabilities for whom you care. The book begins by assessing the quality of life of the adult with a disability. It offers a wealth of suggestions for making that person's life even better. The book then focuses on long-term planning for the individual with a disability and helps answer the question, Who will take care of my child after I'm gone? Learn effective ways to: Assess a disabled individual's strengths and need for support services Develop a plan to for building a busy and productive life Locate good housing and employment opportunities Gather a supportive team of caregivers Advocate for a disabled individual with community agencies
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.
People with learning disabilities are affected by significantly more health problems than the general population and are much more likely to have significant health risks. Yet evidence suggests they are not receiving the same level of health education and health promotion opportunities as other members of society. This important, interdisciplinary book is aimed at increasing professional awareness of the importance of health promotion activities for people with intellectual and developmental disabilities. Written by an international board of experts, it is a thorough and comprehensive guide for students, professionals and carers. The book considers a variety of challenges faced by those with intellectual disabilities, from physical illnesses such as diabetes, epilepsy and sexual health issues, through to issues such as addiction, mental health and ageing. Contributors: Jim Blair, Penny Blake, Malin Broberg, Michael Brown, Eddie Chaplin, Bob Davies, Gillian Eastgate, Paul Fleming, Dora Fisher, Linda Goddard, Tamar Heller, John Heng, Thanos Karatzias, Mike Kerr, Nick Lennox, Tadhg MacIntyre, Beth Marks, Jane McCarthy,Judith Moyle,Karen Nankervis,Ruth Northway, Joseph O'Grady, Renee Proulx, Janet Robertson, Cathy Ross, Jasmina Sisirak, Eamonn Slevin, David S Stewart, William F. Sullivan, Beverley Temple, Hana Válková , Henny van Schrojenstein Lantman-de Valk. "I highly recommend this book to anyone working directly with people with an intellectual disability as well as professionals, academics and students who strive to promote issues and improve the lives of people with intellectual disabilities and their families." Agnes Lunny OBE, Chief Executive of Positive Futures, Northern Ireland "The editors and authors have done practitioners a great favour in bringing together in one volume a comprehensive account of how children and adults with intellectual disabilities can be supported to lead healthier lives." Roy McConkey, Professor of Developmental Disabilities, University of Ulster, Northern Ireland "This timely and important book synthesises current knowledge about health promotion interventions for people with intellectual disabilities. Written by leading researchers and practitioners, it should be on the bookshelves of everyone concerned with addressing the stark inequalities in health experienced by people with intellectual disabilities around the world." Eric Emerson, Professor of Disability Population Health, University of Sydney, Australia and Emeritus Professor of Disability and Health Research, Lancaster University, UK "This book is current and different from other textbooks I have used before. The book is pitched at a very easy to understand level and any healthcare professional or student working with people with intellectual and developmental disabilities can use it. The content is very up to date and relevant. The use of comprehensive authors with differing backgrounds demonstrates the textbook has a wide range of expertise and knowledge packed into it that makes the book very relevant learning disabilities practice. I will definitely be recommending this textbook to undergraduate nursing students in Learning Disabilities." Dorothy Kupara – Lecturer in Learning Disabilities Nursing, University of West London.
