This review is part of a series of reports, Closing the Quality Gap: Revisiting the State of the Science, commissioned by the Agency for Healthcare Research and Quality (AHRQ). The series provides a critical analysis of existing literature on quality improvement strategies and issues for topics identified by the 2003 Institute of Medicine report Priority Areas for National Action: Transforming Health Care Quality.1 As part of its charge to continuously assess progress toward quality and to update the list of priority areas, AHRQ identified people with disabilities as a priority population. Health care for people with disabilities can present special challenges. For example, medical problems can be exacerbated or complicated by the presence of other medical, psychological, economic, and social problems. Likewise, the management of medical problems can be complicated by disability. Thus, optimal care requires coordination of services from various sectors to maximize the function and quality of life of a person with a disability. Since the care outcomes of function, quality of life, and community integration are interdependent, service coordination may need to span the spectrums of both care and support services (e.g., medical care and schools or social agencies). Coordination of care, with attention to the intersection of medical and social services, is congruent with recent policy attention on integrated care and medical homes. This review examines how health care outcomes have been assessed for people with disabilities. Our report seeks to improve shared understanding among a broad audience of researchers, clinicians, and policymakers with varied exposure to disability outcomes or quality improvement research. We begin by discussing outcome measurement issues and exploring conceptual frameworks for thinking about measuring outcomes for research and quality improvement efforts. We examine the diverse perspectives that researchers grounded in different fields bring to bear on what and how to measure. As with all frameworks that deal with complex concepts, the categories, paradigms, or classes we present are at best "ideal types" rather than simple designations with clean boundaries. Our Key Questions (KQs) focus on the quality assessment component of quality improvement. Using the levels-of-analysis framework, we examined outcome measures for medical care and care coordination for people with disabilities, with an emphasis on outcome measures at the level of the individual rather than the population. Key questions include: KQ1. How are outcomes assessed for people with disabilities living in the community in terms of basic medical service needs? KQ1a. What general population outcomes have been validated on and/or adjusted to accommodate disabled populations? KQ1b. What types of modifiers or case-mix adjusters have been used with the general population outcomes to recognize the special circumstances of people with disabilities? KQ1c. What are key parameters for measuring processes related to basic service care access for people with disabilities? KQ2. What measures have been used to assess effectiveness of care for people with disabilities living in the community in the context of coordination among health providers? KQ3. What measures have been used to assess effectiveness of care for people with disabilities living in the community in the context of coordination between community organizations and health providers?

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.

Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children's usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children's social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data. Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

Social services for people with disabilities have undergone substantial changes over time, in particular in the past two decades. Whilst lack of affordable and appropriate housing is a barrier to community living for many people with disabilities, it is only one part of the jigsaw. This book traces some of these changes, in particular related to living situation and support available, in a range of different countries and considers the factors that have influenced these changes. This book considers other aspects of what is needed to bring about real change in the lives of all people with disabilities.