Among the issues confronting America is long-term care for frail, older persons and others with chronic conditions and functional limitations that limit their ability to care for themselves. Improving the Quality of Long-Term Care takes a comprehensive look at the quality of care and quality of life in long-term care, including nursing homes, home health agencies, residential care facilities, family members and a variety of others. This book describes the current state of long-term care, identifying problem areas and offering recommendations for federal and state policymakers. Who uses long-term care? How have the characteristics of this population changed over time? What paths do people follow in long term care? The committee provides the latest information on these and other key questions. This book explores strengths and limitations of available data and research literature especially for settings other than nursing homes, on methods to measure, oversee, and improve the quality of long-term care. The committee makes recommendations on setting and enforcing standards of care, strengthening the caregiving workforce, reimbursement issues, and expanding the knowledge base to guide organizational and individual caregivers in improving the quality of care.

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.

Deaths of individuals with developmental disabilities (DD) due to poor quality of care have been highlighted in the media. There have been concerns raised about inadequate safeguards for such individuals receiving care through state Medicaid home and community-based services waivers. CMS approves and oversees these waivers. Safeguards include the review of, and follow-up action to, critical incidents -- events that harm or have the potential to harm waiver beneficiaries. This report examines the extent to which states: (1) include, as a critical incident, deaths among individuals with DD in waiver programs; (2) have basic components in place to review such deaths; and (3) have adopted additional components to review deaths. Tables.

An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more inclusive place ONE OF THE BEST BOOKS OF THE YEAR: NPR, Booklist • “A candid, accessible cheat sheet for anyone who wants to thoughtfully join the conversation . . . Emily makes the intimidating approachable and the complicated clear.”—Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body People with disabilities are the world’s largest minority, an estimated 15 percent of the global population. But many of us—disabled and nondisabled alike—don’t know how to act, what to say, or how to be an ally to the disability community. Demystifying Disability is a friendly handbook on the important disability issues you need to know about, including: • How to appropriately think, talk, and ask about disability • Recognizing and avoiding ableism (discrimination toward disabled people) • Practicing good disability etiquette • Ensuring accessibility becomes your standard practice, from everyday communication to planning special events • Appreciating disability history and identity • Identifying and speaking up about disability stereotypes in media Authored by celebrated disability rights advocate, speaker, and writer Emily Ladau, this practical, intersectional guide offers all readers a welcoming place to understand disability as part of the human experience. Praise for Demystifying Disability “Whether you have a disability, or you are non-disabled, Demystifying Disability is a MUST READ. Emily Ladau is a wise spirit who thinks deeply and writes exquisitely.”—Judy Heumann, international disability rights advocate and author of Being Heumann “Emily Ladau has done her homework, and Demystifying Disability is her candid, accessible cheat sheet for anyone who wants to thoughtfully join the conversation. A teacher who makes you forget you’re learning, Emily makes the intimidating approachable and the complicated clear. This book is a generous and needed gift.”—Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary Resilient Disabled Body

Home & community-based settings have become a growing part of states' Medicaid long-term care programs, serving as an alternative to care in institutional settings, such as nursing homes. To cover such services, however, states often obtain waivers from certain federal statutory requirements. This report reviews: (1) trends in states' use of Medicaid home & community-based service (HCBS) waivers, particularly for the elderly; (2) state quality assurance approaches, including available data on the quality of care provided to elderly individuals through waivers; & (3) the adequacy of federal oversight of state waivers. Charts & tables.

Health Insurance is a Family Matter is the third of a series of six reports on the problems of uninsurance in the United Sates and addresses the impact on the family of not having health insurance. The book demonstrates that having one or more uninsured members in a family can have adverse consequences for everyone in the household and that the financial, physical, and emotional well-being of all members of a family may be adversely affected if any family member lacks coverage. It concludes with the finding that uninsured children have worse access to and use fewer health care services than children with insurance, including important preventive services that can have beneficial long-term effects.