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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
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.
Brain disordersâ€"neurological, psychiatric, and developmentalâ€"now affect at least 250 million people in the developing world, and this number is expected to rise as life expectancy increases. Yet public and private health systems in developing countries have paid relatively little attention to brain disorders. The negative attitudes, prejudice, and stigma that often surround many of these disorders have contributed to this neglect. Lacking proper diagnosis and treatment, millions of individual lives are lost to disability and death. Such conditions exact both personal and economic costs on families, communities, and nations. The report describes the causes and risk factors associated with brain disorders. It focuses on six representative brain disorders that are prevalent in developing countries: developmental disabilities, epilepsy, schizophrenia, bipolar disorder, depression, and stroke. The report makes detailed recommendations of ways to reduce the toll exacted by these six disorders. In broader strokes, the report also proposes six major strategies toward reducing the overall burden of brain disorders in the developing world.
Parents of children with disabilities confront a number of challenges and may be at risk for depressive or trauma-related symptoms. Changes in family roles and routines can cause stress for parents, siblings, and extended family alike as they confront multiple issues, including behavioural problems and frequent healthcare needs. Despite such challenges, many families derive a sense of meaning from facing their difficulties in a positive way. This book surveys the most recent empirical research on families of children with disabilities and provides guidelines and strategies for the developmental and family psychologists who support these clients. The book follows a developmental progression, first examining the immediate effects that a child's disability can have on his or her family and looking at the changes that occur as the child grows and faces new challenges. In doing so, the author examines studies employing a variety of methodologies, including quantitative research, meta-analyses, and qualitative methods such as narrative analysis. The book also describes cognitive behavioural interventions and programs that train parents to more effectively manage child behavioural problems and thereby improve family well-being.
Approximately 2.5 million people in the United States--one percent of the population--have an intellectual disability (previously referred to as mental retardation). These conditions range from genetic disorders such as Down syndrome to disabilities caused by infectious diseases and brain injury. Intellectual Disability: A Guide for Families and Professionals, by one of the country's foremost authorities on intellectual disability, is a comprehensive resource that will be of importance to anyone with a personal connection to a child or adult with a neurodevelopmental disorder. Emphasizing the humanity of persons with intellectual and related developmental disabilities, psychiatrist and pediatrician James Harris provides essential information on assessment and diagnosis of intellectual disability, treatments for specific disorders, and ways to take advantage of the wide array of services available today. The focus throughout is on the development of the person, the positive supports necessary for self-determination, and, to the extent possible, independent decision making. Harris also surveys historical attitudes toward intellectual disability, the medical community's current understanding of its causes and frequency, and the associated physical, behavioral, and psychiatric conditions (such as seizure disorder, depression, and autism) that often accompany particular types of intellectual disability. The book addresses legal, medical, mental health, and research-related issues as well as matters of spirituality, highlighting the ways in which individuals with intellectual disability can meaningfully participate in the spiritual lives of their families and their communities. Each chapter ends with a series of key points to remember, and the book concludes with a list of additional resources of further interest. Intellectual Disability is a must-read for parents and families of those with neurodevelopmental disorders, providing guidance and essential information to help their family members effectively, and to make a significant, positive difference in their lives now and in the future.
Frequently, people with developmental disabilities are excluded from bereavement ceremonies when a loved one or friend dies, therefore not receiving the special care needed for comprehending their own feelings of loss. Focusing on creating mourning rituals for special needs people, this guide offers specific rituals and techniques for caregivers to use while helping explain death and dying. With more than 20 examples such as the use of pictures and storytelling or drawing and music, these practical tools can substantially lend to the understanding of grief and sadness for intellectually and developmentally disabled adults and adolescents.
The first international, cross-disciplinary book to explore and understand the lives of parents with intellectual disabilities, their children, and the systems and services they encounter Presents a unique, pan-disciplinary overview of this growing field of study Offers a human rights approach to disability and family life Informed by the newly adopted UN Convention on the Rights of Persons with Disabilities (2006) Provides comprehensive research-based knowledge from leading figures in the field of intellectual disability
Learning objectives, instructive case stories, stimulating questions for reflection, and key Internet resources help make this a user-friendly textbook - one that students will refer to for years to come. With this thorough compendium of information, insights, and answers, future educators, social workers, researchers, and clinicians will know what to doand how to do it once they start their work with people with disabilities. the editors and the majority of the contributors are the top Canadian specialists in the disability field. Ivan Brown, Ph.D., is Associate Professor and Manager, Centre for Excellence for Child Welfare, Faculty of Social Work, at Unversity of Toronto; his co-editor, Maire Percy, Ph.D., isDirector, Neurogenetics Lab and Professor Emeritus of Physiology and Ob/Gyn, at Unversity of Toronto.