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Universal design is the notion of considering all potential users when designing places, information, communication, and other items, services, and policies. This book builds upon universal design concepts in its final chapters, which propose solutions to the barriers described in earlier chapters. This chapter starts this process by describing the origins and tenets of the universal design movement. Examples of basic principles of universal design include equitable use, flexibility in use, simple and intuitive use, and low physical effort in use.

Electronic health information technologies and the Internet are playing increasing roles in health care and the ways that patients obtain information about their conditions and options for care. This chapter reviews how these electronic sources are used by health care consumers and makes a case that these information technologies could offer potentially enormous benefits to persons with disabilities. Despite this, persons with disabilities may confront obstacles to accessing information through electronic sources and to sorting through voluminous information to evaluate its accuracy and utility. The chapter reviews guidelines about how clinicians and their patients might safely and effectively communicate via secure Internet portals.

Nearly 20% of Americans live today with some disability, and this number will grow as the “baby boomers” age. Despite this, the U.S. health care system is ill equipped to provide optimal, safe, and efficient care to this population. Significant barriers still block people with disabilities from receiving high quality health care. This book examines these barriers then proposes solutions to make health care accessible and welcoming to people with disabilities, focusing on adults who are blind, deaf, hard of hearing, or who have difficulties using their legs, arms, or hands. The book draws upon stories told by persons with these conditions and reviews of national surveys, governmental policies, and current practices. Some barriers are obvious, such as examining tables that are too high. Other problems arise from faulty communication between patients and health care professionals, including misconceptions among clinicians about the daily lives, preferences, values, and abilities of patients with disabilities. Yet others relate to restrictive health insurance policies. Finding patient-centered solutions to these many impediments will take more than simply building ramps. The first part of the book examines broad social and health insurance policies affecting people with disabilities. The second part discusses current barriers to health care, while the third proposes ways to overcome these hurdles and improve care. Using universal design principles, these solutions recognize that creating safe and accessible health care for people with disabilities will benefit virtually everyone at some point in their lives.

The factors outside the traditional health care system—or straddling the boundary between health care and other sectors—can often have huge implications for persons' health and well being. This chapter briefly explores four such topics: assistive technology, personal care assistance, accessible public transportation, and accessible housing. It looks at controversies about health insurance coverage of these items and services.

This chapter starts by considering the Americans with Disabilities Act and regulatory requirements for ensuring effective communications with persons with disabilities. It then reviews approaches for accommodating communication needs, ranging from simple approaches (such as large point fonts and Braille signage) to an increasingly sophisticated range of communication technologies for persons with a wide variety of accommodation needs. For example, the chapter describes various technologies that assist persons who are blind or who have low vision, as well as communication strategies and technologies for persons who are deaf or hard of hearing. It also describes the training and professional obligations of sign language interpreters.

This chapter addresses the design of health care settings that are accessible to persons with physical and sensory disabilities. It starts by reviewing Americans with Disabilities Act regulations. It then discusses a process for designing accessible space, including the involvement of persons with disabilities as partners. The chapter reviews such items as lighting, acoustics, flooring, air quality, heating and cooling, emergency notification alarms, and signage as well as basic questions about the size and configuration of spaces, medical equipment, and furniture. It offers suggestions about accessible equipment, such as weight scales.

This chapter describes the physical barriers persons with disabilities can encounter when they visit health care settings, including difficulties opening doors, inaccessible restroom facilities, and examining tables that are too high for persons to access. It also examines problems encountered by patients who have blind or low vision as they try to navigate health care settings, including staff being unaware of appropriate ways to assist them with transiting through space (e.g., use of sighted guides). The chapter presents information about relatively low use of screening and preventive services among persons with mobility problems, and relates these findings to inaccessible equipment and other access barriers. Given higher rates of obesity and overweightness among persons with disabilities, particular issues relating to access for persons who are obese are also discussed.

The community environments within which people live have enormous consequences for their health. This chapter reaches beyond health care settings into communities to explore briefly those attributes that make communities safe and welcoming to persons with disabilities, and that allow all residents to participate fully in community life. It argues that demographic imperatives force the need for greater public policy focus on making accessible built environments. With an aging population and growing rates of obesity, along with declining rates of physical fitness, planners should emphasize building environments that support independent living and promote physical activity, healthy eating, and other positive health-related behaviors. Healthy built environments can improve not only physical health but also mental health, over the life span. The chapter briefly reviews examples from other countries of efforts to construct walkable communities and discusses challenges to bringing those changes to the United States.

This chapter starts by describing the importance of interpersonal communication and relationships between patients and clinicians for ensuring high quality health care, drawing upon numerous studies that report better clinical outcomes with better communication. It then presents various challenges to interpersonal communication between patients with disabilities and clinicians, ranging from issues such as attitudes of clinicians to lack of accommodations for persons who are blind, experience low vision, deaf, or hard of hearing. The chapter presents examples of inadequate or damaging interpersonal communication. It raises particular concern about discussions of potentially sensitive topics, such as sexuality and reproductive health, mental health, and substance abuse.

This chapter explores how persons with disabilities find doctors and other health care professionals to provide primary and specialty care. It presents information about health care services used by persons with disabilities. It looks at different approaches for paying for health care services and describes how persons with disabilities must pay considerable costs out-of-pocket. The costs of accommodating disabilities, such as expenses for sign language interpreters, are also described. The chapter addresses a particularly challenging problem, as young adults with disabilities try to transition from the pediatric health care settings of childhood into the adult health care sector.

This introductory chapter provides demographic information about the prevalence of disability among U.S. residents and outlines population trends suggesting rising numbers of persons with disabilities. It also reviews concerns about health care quality in the United States, drawing upon reports of the Institute of Medicine and other sources to describe worrisome quality shortfalls, especially affecting persons with chronic health conditions. It suggests that persons with disabilities confront particular risks of receiving substandard care, along a variety of dimensions of quality and access.

Approximately 15% of Americans lack health insurance, and many have insurance policies with limited benefits, inadequate to meet their needs. This chapter examines the health insurance coverage of persons with disabilities, focusing primarily on working-age adults (the vast majority of elderly adults have Medicare). Since most working-age Americans obtain health insurance coverage through their employment, the chapter explores the consequences of leaving the workforce—or being unemployed—especially when individuals apply for Social Security Disability Insurance and must then await Medicare coverage. It also reviews basic concerns relating to benefits design, particularly policies (such as medical necessity requirements) that might have special implications for persons with disabilities.

Interpersonal interactions during physical examinations and medical procedures convey volumes about respect, empathy, and understanding. Listening and following patients' instructions, such as about transferring them from a wheelchair to examination table, can also determine the safety of both patients with disabilities and clinical staff. This chapter examines etiquette within health care settings, starting with first contacts with office staff at the check-in desk and following patients through waiting rooms and into the examining or testing room. It identifies challenges patients with disabilities face in trying to accommodate their needs for positioning and appropriate communication during clinical interactions. The chapter also discusses telephone communication for persons who are deaf or hard of hearing.

This chapter explores communication between patients with disabilities and clinicians about “technical” matters—the purportedly objective “facts” that guide clinical decision making, such as discussions about symptoms, signs, therapeutic options, and treatment side effects. It discusses concerns that clinicians may have inadequate scientific knowledge about many disabling conditions, and they therefore make decisions based on their personal views of patients' quality of life rather than objective medical evidence. Conflicts can arise when clinicians fail to appreciate the value persons with disabilities place on their lives. The chapter also discusses problems making clinical information, such as recommendations for treatments and warnings about side effects, accessible to persons with impaired vision or hearing. Failure to accommodate patients' communication needs can compromise patients' safety.

This chapter offers suggestions for improving open and effective patient-clinician communication. The first step involves training clinicians to recognize communication barriers. All members of health care organizations, from senior leadership to front-line office assistants, require training to enhance awareness of potential communication barriers and strategies for accommodating communication needs. The chapter reviews various approaches for improving communication, as well as training clinicians to improve their interview and interaction skills with patients with disabilities. Training should include efforts to increase sensitivity to stigmatizing attitudes and other social barriers experiences by persons with disabilities. The chapter also discusses clinicians with disabilities.

Shifting the paradigm of care from traditional roles of clinicians directing patients to a model of collaboration in care has gained currency as a strategy for improving both health care quality and outcomes. This chapter describes self-management and collaborative care programs, which are well developed for certain chronic conditions (such as arthritis and diabetes). It then discusses various considerations in moving toward a self-management and collaborative care approach for persons with disabilities. The core to any such effort is for clinicians to listen to and learn from their patients with disabilities, who are often the experts about their health and needs. The chapter looks at accessibility of self-management and resources and technologies to aid self-management.