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Revision of papers presented at the Eloisa de Lorenzo Symposium on Family Quality of Life, held July 30-Aug. 1, 2000, in Seattle, Wash.
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.
This handbook is the first comprehensive text on positive psychology and disability. Emphasizing paradigmatic changes in understanding disability, the text covers traditional disciplines in positive psychology; and applications of positive psychology to domains like education or work.
The aim of this encyclopedia is to provide a comprehensive reference work on scientific and other scholarly research on the quality of life, including health-related quality of life research or also called patient-reported outcomes research. Since the 1960s two overlapping but fairly distinct research communities and traditions have developed concerning ideas about the quality of life, individually and collectively, one with a fairly narrow focus on health-related issues and one with a quite broad focus. In many ways, the central issues of these fields have roots extending to the observations and speculations of ancient philosophers, creating a continuous exploration by diverse explorers in diverse historic and cultural circumstances over several centuries of the qualities of human existence. What we have not had so far is a single, multidimensional reference work connecting the most salient and important contributions to the relevant fields. Entries are organized alphabetically and cover basic concepts, relatively well established facts, lawlike and causal relations, theories, methods, standardized tests, biographic entries on significant figures, organizational profiles, indicators and indexes of qualities of individuals and of communities of diverse sizes, including rural areas, towns, cities, counties, provinces, states, regions, countries and groups of countries.
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
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.
Decades of research have demonstrated that the parent-child dyad and the environment of the familyâ€"which includes all primary caregiversâ€"are at the foundation of children's well- being and healthy development. From birth, children are learning and rely on parents and the other caregivers in their lives to protect and care for them. The impact of parents may never be greater than during the earliest years of life, when a child's brain is rapidly developing and when nearly all of her or his experiences are created and shaped by parents and the family environment. Parents help children build and refine their knowledge and skills, charting a trajectory for their health and well-being during childhood and beyond. The experience of parenting also impacts parents themselves. For instance, parenting can enrich and give focus to parents' lives; generate stress or calm; and create any number of emotions, including feelings of happiness, sadness, fulfillment, and anger. Parenting of young children today takes place in the context of significant ongoing developments. These include: a rapidly growing body of science on early childhood, increases in funding for programs and services for families, changing demographics of the U.S. population, and greater diversity of family structure. Additionally, parenting is increasingly being shaped by technology and increased access to information about parenting. Parenting Matters identifies parenting knowledge, attitudes, and practices associated with positive developmental outcomes in children ages 0-8; universal/preventive and targeted strategies used in a variety of settings that have been effective with parents of young children and that support the identified knowledge, attitudes, and practices; and barriers to and facilitators for parents' use of practices that lead to healthy child outcomes as well as their participation in effective programs and services. This report makes recommendations directed at an array of stakeholders, for promoting the wide-scale adoption of effective programs and services for parents and on areas that warrant further research to inform policy and practice. It is meant to serve as a roadmap for the future of parenting policy, research, and practice in the United States.
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.
"What a marvelous and amazing textbook. Drs. Marini, Glover-Graf and Millington have done a remarkable job in the design of this highly unique book, that comprehensively and very thoughtfully addresses the psychosocial aspects of the disability experience. These highly respected scholars have produced a major work that will be a central text in rehabilitation education for years to come." From the Foreword by Michael J. Leahy, Ph.D., LPC, CRC Office of Rehabilitation and Disability Studies Michigan State University "This is an excellent book, but the best parts are the stories of the disabled, which give readers insights into their struggles and triumphs." Score: 94, 4 Stars--Doody's Medical Reviews What are the differences between individuals with disabilities who flourish as opposed to those who never really adjust after a trauma? How are those born with a disability different from individuals who acquire one later in life? This is the first textbook about the psychosocial aspects of disability to provide students and practitioners of rehabilitation counseling with vivid insight into the experience of living with a disability. It features the first-person narratives of 16 people living with a variety of disabling conditions, which are integrated with sociological and societal perspectives toward disability, and strategies for counseling persons with disabilities. Using a minority model perspective to address disability, the book focuses on historical perspectives, cultural variants regarding disability, myths and misconceptions, the attitudes of special interest and occupational groups, the psychology of disability with a focus on positive psychology, and adjustments to disability by the individual and family. A wealth of counseling guidelines and useful strategies are geared specifically to individual disabilities. Key Features: Contains narratives of people living with blindness, hearing impairments, spinal cord injuries, muscular dystrophy, polio, mental illness, and other disabilities Provides counseling guidelines and strategies specifically geared toward specific disabilities, including "dos and don'ts" Includes psychological and sociological research relating to individual disabilities Discusses ongoing treatment issues and ethical dilemmas for rehabilitation counselors Presents thought-provoking discussion questions in each chapter Authored by prominent professor and researcher who became disabled as a young adult
Twenty-Two Years presents the results of a unique longitudinal study of the first 22 years in the lives of more than 200 young people with varying degrees of mental retardation. By following their paths through available services, job histories, leisure activities, friendships, and marriages, the authors provide objective information about the quality of life of young people with mental retardation. The book makes a unique contribution by determining what factors in childhood predict who will and who will not require mental retardation services and, for those who disappear from services, why some fare better than others. Most important, the results help answer a question that haunts parents: "What will happen when my child grows up?" This study expands on an internationally acclaimed clinical and epidemiological study of children with mental retardation published in 1970. It provides prevalence rates by severity of mental retardation, gender, social class, and family stability, and shows how these change over time. The authors confirm the central role of biomedical factors in the etiology of severe mental retardation. For the etiology of mild mental retardation, the book examines the relative contributions of biomedical and intergenerational genetic factors as well as psychosocial adversity. The book should be of interest to a broad range of clinicians, researchers, and students, as well as the families of people with mental retardation, and it will serve as a model for future epidemiological and follow-up research.