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This book discusses American and European policies surrounding deinstitutionalization and community living, including Articles 12 and 19 of the UNCRPD.
Living independently and participating in one's community are priorities for many people. In many regions across the United States, there are programs that support and enable people with disabilities and older adults to live where they choose and with whom they choose and to participate fully in their communities. Tremendous progress has been made. However, in many cases, the programs themselves â€" and access to them â€" vary not only between states but also within states. Many programs are small, and even when they prove to be successful they are still not scaled up to meet the needs of the many people who would benefit from them. The challenges can include insufficient workforce, insufficient funding, and lack of evidence demonstrating effectiveness or value. To get a better understanding of the policies needed to maximize independence and support community living and of the research needed to support implementation of those policies, the National Academies of Sciences, Engineering, and Medicine convened a public workshop in October 2015. Participants explored policies in place that promote independence and community living for older adults and people with physical disabilities, and identified policies and gaps in policies that can be barriers to independence and the research needed to support changing those policies. This report summarizes the presentations and discussions from the workshop.
Accessible and affordable housing can enable community living, maximize independence, and promote health for vulnerable populations. However, the United States faces a shortage of affordable and accessible housing for low-income older adults and individuals living with disabilities. This shortage is expected to grow over the coming years given the population shifts leading to greater numbers of older adults and of individuals living with disabilities. Housing is a social determinant of health and has direct effects on health outcomes, but this relationship has not been thoroughly investigated. In December 2016, the National Academies of Sciences, Engineering, and Medicine convened a public workshop to better understand the importance of affordable and accessible housing for older adults and people with disabilities, the barriers to providing this housing, the design principles for making housing accessible for these individuals, and the features of programs and policies that successfully provide affordable and accessible housing that supports community living for older adults and people with disabilities. This publication summarizes the presentations and discussions from the workshop.
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.
Living independently and participating in one's community are priorities for many people. In many regions across the United States, there are programs that support and enable people with disabilities and older adults to live where they choose and with whom they choose and to participate fully in their communities. Tremendous progress has been made. However, in many cases, the programs themselves â€" and access to them â€" vary not only between states but also within states. Many programs are small, and even when they prove to be successful they are still not scaled up to meet the needs of the many people who would benefit from them. The challenges can include insufficient workforce, insufficient funding, and lack of evidence demonstrating effectiveness or value. To get a better understanding of the policies needed to maximize independence and support community living and of the research needed to support implementation of those policies, the National Academies of Sciences, Engineering, and Medicine convened a public workshop in October 2015. Participants explored policies in place that promote independence and community living for older adults and people with physical disabilities, and identified policies and gaps in policies that can be barriers to independence and the research needed to support changing those policies. This report summarizes the presentations and discussions from the workshop.
This book examines choice and preference in the lives of people with disability, focusing on people with intellectual and developmental disabilities. It provides an overview of choice and examines foundational concepts related to choice and preference, including self-determination and supported decision making. Chapters examine a range of critical service and policy issues, such as guardianship, individualized funding, the health care system, and the situation regarding choices for people with disability in international contexts. In addition, chapters explore issues ranging from the development of preference and choice in childhood to choices in older age and end of life matters. It provides in-depth analysis of particular choices faced at different points across the lifespan. The book concludes with implications for policy and practice. Topics featured in this book include: Supported decision making for adults with intellectual disabilities or acquired brain injury. The role of parents and families in the development of choice-making skills. Preference assessments for individuals who cannot tell us what they prefer. Employment opportunities for people with intellectual disabilities. Sexual and reproductive rights for people with intellectual disabilities. Disability and the choice to become a parent. Choice, Preference, and Disability is an essential resource for researchers, professors, clinicians, therapists, and other professionals as well as graduate students in the fields of developmental and positive psychology, rehabilitation, social work, special education, occupational, speech and language therapy, public health, and healthcare policy.
Blending original research with policy analysis, critical reviews of existing knowledge, and examples of cutting-edge programs and policies, this book shows you what works and helps you make sound decisions about how to allocate resources.
A Publishers Weekly Best Book of the Year for Nonfiction "...an essential and engaging look at recent disability history."— Buzzfeed One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human. A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance, and inclusion in society. Paralyzed from polio at eighteen months, Judy’s struggle for equality began early in life. From fighting to attend grade school after being described as a “fire hazard” to later winning a lawsuit against the New York City school system for denying her a teacher’s license because of her paralysis, Judy’s actions set a precedent that fundamentally improved rights for disabled people. As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples’ rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act. Candid, intimate, and irreverent, Judy Heumann’s memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.
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.