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The Environmental Context of Disability: The Case of Health Care Facilities

My primary physician and several specialists I respect all practice at a major university medical center fairly close to my home. Recently, though, when I requested a gynecology referral there, I was told that I would not be seen unless I could bring my own assistants to help me get on the examining table. This is a huge world-renowned hospital. This is the era of ADA [Americans with Disabilities Act]. Still I am treated as though I don’t belong with the other women who seek services in OB/GYN unless I can make my disability issues go away. This news makes me weary. I know it means once again that I can’t simply pursue what I need as an ordinary citizen. I can’t be just a woman who needs a pelvic exam; I must be a trailblazer. I must make the many bits of legal information and persuasive arguments it will take to get me into that clinic.

Female power-wheelchair user with postpolio syndrome Carol J. Gill (1993 [used with permission])


This story illustrates how physical and social environments can affect a person’s opportunities to participate in everyday life—in this case, by getting routine preventive health services—without making a disproportionate effort. The woman recounting this experience of discrimination had the knowledge, skills, and determination to get what she needed, despite equipment inadequacies and administrative obstacles. Others with less education, savvy, and resilience, however, may be discouraged and may abandon their efforts to obtain appropriate preventive, diagnostic, and treatment services.

The creation of accessible environments that promote independence and community participation has been and remains a focal point of advocacy by and for people with disabilities. The conceptual framework in the 1991 Institute of Medicine (IOM) report Disability in America particularly stressed the role of environmental barriers in contributing to disability. Indeed, the report defined disability as reflecting “a gap between a person’s capacities and the demands of relevant, socially defined roles and tasks in a particular physical and social environment” (IOM, 1991, p. 81). Thus



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The Future of Disability in America 6 The Environmental Context of Disability: The Case of Health Care Facilities My primary physician and several specialists I respect all practice at a major university medical center fairly close to my home. Recently, though, when I requested a gynecology referral there, I was told that I would not be seen unless I could bring my own assistants to help me get on the examining table. This is a huge world-renowned hospital. This is the era of ADA [Americans with Disabilities Act]. Still I am treated as though I don’t belong with the other women who seek services in OB/GYN unless I can make my disability issues go away. This news makes me weary. I know it means once again that I can’t simply pursue what I need as an ordinary citizen. I can’t be just a woman who needs a pelvic exam; I must be a trailblazer. I must make the many bits of legal information and persuasive arguments it will take to get me into that clinic. Female power-wheelchair user with postpolio syndrome Carol J. Gill (1993 [used with permission]) This story illustrates how physical and social environments can affect a person’s opportunities to participate in everyday life—in this case, by getting routine preventive health services—without making a disproportionate effort. The woman recounting this experience of discrimination had the knowledge, skills, and determination to get what she needed, despite equipment inadequacies and administrative obstacles. Others with less education, savvy, and resilience, however, may be discouraged and may abandon their efforts to obtain appropriate preventive, diagnostic, and treatment services. The creation of accessible environments that promote independence and community participation has been and remains a focal point of advocacy by and for people with disabilities. The conceptual framework in the 1991 Institute of Medicine (IOM) report Disability in America particularly stressed the role of environmental barriers in contributing to disability. Indeed, the report defined disability as reflecting “a gap between a person’s capacities and the demands of relevant, socially defined roles and tasks in a particular physical and social environment” (IOM, 1991, p. 81). Thus

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The Future of Disability in America defined, disability is not an inherent attribute of the individual but, rather, is the result of the interaction of the individual with the environment, including social norms. Also, as described in Chapter 2, the International Classification of Functioning, Health and Disability (ICF) (WHO, 2001) stresses this interaction. Over several decades, legislative and regulatory changes as well as technological innovations, advances in biomedicine, and shifts in attitudes about disability have helped to reduce or mitigate some kinds of environmental barriers. To cite a few examples of the environmental progress that has been made since the 1991 IOM report was published, technological advances and telecommunications regulations have made it easier for people with vision, hearing, and other impairments to communicate electronically with clients, coworkers, friends, family, and others, although keeping pace with product innovation and building in access from the outset are significant policy challenges (see Appendix F). Getting around the community and traveling beyond it are becoming easier for many people with disabilities because of the barrier removal and accessibility requirements of the Americans with Disabilities Act (ADA) and other policies—notwithstanding continuing problems with compliance, enforcement, and financing and the need for more research to evaluate the effectiveness of policies (GAO, 1993, 1994a; NCD, 2000c, 2001; Harrison, 2002; see also Appendix G). In addition to the removal of barriers, interest is growing in strategies of universal and accessible design. The goal for these strategies is to create—from the outset—physical environments and products that are easily used and accessible to as wide a range of potential users as practicable. The aging of the baby boom generation is one force driving greater attention to transgenerational design, including the design of attractive, broadly accessible housing and public spaces (see, e.g., Pirkl [1994], Luscombe [2003], and the AARP web page at http://www.aarp.org/families/home_design/). In general, the more that universal design principles are applied to products, services, and environments, the less the need for assistive or adaptive technologies will be, although the latter will continue to be necessary for many tasks and environments. Despite progress in barrier removal and advancements in universal design-based practices, significant environmental barriers remain, sometimes in places where one would not expect them, for example, hospitals and physicians’ offices that lack buildings, equipment, and services suitable for people with physical mobility, sensory, and other impairments. The persistence of such environmental barriers will only become more serious as the number of people at the highest risk of disability grows substantially in coming decades. Still, growing numbers should mean a larger market for accessible products and an increasing demand for accessible environments. Part of the charge to the IOM included examination of the role of assis-

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The Future of Disability in America tive technologies and physical environments in increasing the participation in society of people with disabilities. The next section of this chapter briefly reviews the state of research on the link between environmental factors and disability. The chapter then examines accessibility in health care facilities as important in itself and also as illustrative of the dimensions of the physical environment and of public policies that can impede or support independence and participation. The concluding section of the chapter presents the committee’s recommendations. The next chapter discusses assistive technologies and universal or accessible design, which extend to the design of buildings and other physical spaces. Other chapters of this report (as well as Appendixes D to G) also consider the physical and social environments in which people conduct their lives. The committee initially planned to examine accessibility in several areas, including housing, transportation, and work, but it determined that such an examination would exceed its resources and would require another report (or several reports). Given the sparseness of well-designed studies on the relationship between environmental factors and disability outcomes, the discussion in this chapter is informed by the committee’s experience and observations as well as available research. Furthermore, the discussion reflects value judgments, particularly the judgment that certain types of environmental barriers should be reduced or eliminated as a matter of fundamental equity, even if many people with chronic health conditions and impairments have demonstrated resiliency, persistence, and creativity in finding ways around such barriers and living full lives despite them. RESEARCH ON THE ROLE OF THE ENVIRONMENT IN DISABILITY As described in Chapter 2, the ICF systematically categorizes and codes features of the environment that may support or impede health and functioning (WHO, 2001). The major categories of the environment in the ICF are (1) products and technology (e.g., personal assistive technologies and communications products); (2) the natural environment and human-made changes to the environment (e.g., physical geography and air quality); (3) support and relationships (e.g., immediate family and health professionals); (4) attitudes (e.g., the individual attitudes of strangers and social norms); and (5) services, systems, and policies (e.g., transportation or economic policies). The ICF states that the environment interacts with “all components of functioning and disability” (WHO, 2001, p. 8). That interaction tends, however, to be more evident for activity limitations and participation restrictions (e.g., traveling or working) than for impairments in body functions or structure (e.g., restricted motion of a joint or the absence of a

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The Future of Disability in America limb). The small research literature on disability and environmental factors reflects this. For the 2005 IOM workshop on disability in America, Keysor (2006) summarized the ICF and other taxonomies of the environment, described instruments for measuring the relationship between the environment and disability, and reviewed research on how the environment influences disability. She found a limited amount of research, especially prospective, controlled studies, that directly evaluated people’s functioning and participation in the community. Of the studies that she identified, most involved mobility limitations and the built environment (e.g., buildings and pedestrian spaces). In her review, Keysor pointed to evidence suggesting “that some environments that are more facilitative are associated with less disability, whereas other environments that are facilitative are associated with more disability” (Keysor, 2006, p. 98). This seeming paradox may reflect a complex and dynamic process of human adaptation to or modification of the environment. For example, people with greater levels of physical impairment and more difficulty getting around may modify their environments to reduce barriers and make life easier; they may also choose their home or work environment, or both, to minimize barriers. Studies that can untangle such causal relationships are important but difficult. In general, research has tended to examine how or whether people perceive environmental features as barriers and has less often attempted to observe directly the effects of environmental features on such outcomes as functioning, social participation, and costs. Assessments of interventions to modify the environment are uncommon. A few controlled studies have evaluated home modifications (see e.g., Mann et al. [1999], Gitlin [1995], and Gitlin et al. [2006]). Each of these types of research is important, although some strategies are more difficult to design and implement than others. Assessing people’s perceptions of the effects of environmental barriers on activities and participation is usually easier and less expensive than directly measuring the effects of environmental features on these outcomes and, especially, undertaking controlled studies of interventions to modify these features. The final section of this chapter includes recommendations about directions for further research on environmental factors. ACCESSIBLE HEALTH CARE FACILITIES [A] commonplace but counterintuitive aspect of our health care delivery system [is] the failure to provide safe and accessible care to those who have most frequent need of it—people with disabilities. Reis et al. (2004, p. 2)

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The Future of Disability in America Discussions of disability and health care access often focus on financial access, in particular, access by people with disabilities to public or private health insurance plans that cover needed services and technologies.1 The following discussion examines physical access to health care facilities and equipment and access to information in appropriate forms for people with vision, hearing, cognitive, or other impairments affecting communication. Many accessibility problems in health care facilities are representative of problems with poorly designed buildings, inaccessible equipment, and inattention to alternative modes of communication that can impede or support independence and participation in schools, stores, government offices, workplaces, and other physical settings. Deficient access to health care facilities and equipment can, however, be particularly shocking, as the following quotations from focus group participants reveal: We can’t treat you here; this is an ambulatory clinic, which means you have to be able to walk. You are wheelchair bound. Told to a woman about to start chemotherapy I literally chose my doctors because of those [adjustable examination] tables, so that it would be easier for them to examine me. Female power-wheelchair user with cerebral palsy I’ve not been on a wheelchair scale since rehab, over 22 years [ago]…. My HMO has one, but apparently it’s in a storage room down by emergency somewhere, and nobody has ever seen it. Male manual-wheelchair user with spinal cord injury All cited in Kailes (2006) As used here, physical access refers to features of individual facilities rather than to the geographic distribution of facilities, which is also an important issue for people with and without chronic health conditions or impairments. For convenience, the term physical access will sometimes encompass information or communications access. Physical and communications access to health care facilities and other public spaces may be improved through a universal or “access-for-all” design strategy that, as described above, attempts to create environments or products usable by people with as wide a range of abilities as practical. Special equipment or accommodations may still be necessary for certain purposes and users, but even then, an accessible design strategy will consider how an environment or product can facilitate the use of such equipment or 1 Chapters 8 and 9 of this report examine certain financial dimensions of health care access. Appendix D discusses the application of the Americans with Disabilities Act to health care, including the U.S. Supreme Court decision in Olmstead v. L.C.

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The Future of Disability in America modifications. As described in Chapter 4, a “disability-competent” health care system will include appropriate features for people with disabilities (see, e.g., DeJong et al. [2002] and Palsbo and Kailes [2006]). Box 6-1 includes selected universal design features for health care facilities that were identified by the North Carolina Office on Disability and Health. Some of the cited features are not physical but, rather, refer to the knowledge, training, and sensitivity of the people who work in these facilities. Additional recommendations, not listed in the box, cover the space outside buildings, including entryways, sidewalks, and parking areas. BOX 6-1 Selected Universal Design and Other Features for Health Care Facilities Protection from the weather at entrance doors Power door mechanisms at interior and exterior entrances Spaces in waiting areas where wheelchair users can sit out of traffic lanes but with other people Chairs for use by people who cannot stand while transacting business Chairs that can be set at different heights for use by children, adults, and older people, some equipped with armrests for those who need assistance rising to their feet Weight scales that allow people with difficulty standing to hold on, and weight scales that allow people to be weighed while they are sitting in a wheelchair Motorized, adjustable-height treatment and physical examination tables and chairs Mammography machines that can be used for a woman in a seated position A portable, amplified communications system or device with volume control at service desks and treatment spaces for people who are hard of hearing More than one accessible toilet and dressing room, with some left-handed and some right-handed A TTY for use by people who are deaf to make phone calls from health care facilities* Staff awareness and training in using the telephone relay systems* Awareness and sensitivity training for all staff and professional personnel on interacting with people with disabilities    *Originally, TTY stood for “text teletypewriter,” but today the abbreviation is more often explained as “text telephone,” a device that allows those with hearing or speech impairments to type and read messages sent over telephone lines. These devices are also called TDDs (as in the Americans with Disabilities Act) for “telecommunications device for the deaf.” A telephone relay system usually involves an operator who reads typed messages to and types voice messages from telephone users who do not have hearing impairments. For further discussion, see Appendix F of this report. SOURCE: Center for Universal Design and North Carolina Office on Disability and Health (undated).

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The Future of Disability in America Data on Difficulties with Physical and Communications Access in Health Care Facilities Many people have vivid memories of medical procedures and the instructions they received, such as, “Just hop up, look here, read this, listen up, don’t breathe, and stay still!” June Isaacson Kailes (2006) Although the committee encountered many personal accounts of access barriers in health care facilities, it located very few consumer or patient survey data on these problems. In their recent examination of the financial, physical, and other barriers to accessible health care, Iezzoni and O’Day (2006) reported no findings on such barriers from data from the disability supplement to the National Health Interview Survey or other surveys. The authors relied primarily on interviews, focus groups, and their own observations and experiences to describe access problems and their consequences. DeJong and colleagues (2002) have observed that health services researchers have tended to overlook people with disabilities, and to the extent that that is true, it may contribute to the limited research on environmental barriers. Moreover, occupational therapists and others knowledgeable about rehabilitation and the barriers that people encounter in health care facilities may not gravitate to health services research (see, e.g., Andresen et al. [2006]). Two recent surveys suggest the scope of the accessibility problem in health care facilities. One survey, which involved approximately 400 Californians with mobility limitations, found that nearly one in five people surveyed had problems with the main entrance to their physician’s office and one-third had problems entering examination rooms (Markwalder, 2005). Among those using wheelchairs, 45 percent reported difficulty using mammography and other imaging equipment, 69 percent reported difficulty using physical examination tables, and 60 percent reported problems with inaccessible weight scales. More than 90 percent of people with vision problems did not receive medical information in alternative formats. A second survey of approximately 400 people nationwide, which was conducted by the Rehabilitation Engineering Research Center on Accessible Instrumentation, found that respondents identified physical examination tables, radiology equipment, exercise and rehabilitation equipment, and weight scales as the most difficult-to-use equipment in health care settings (Winters et al., 2007). Safety was a primary concern, as were comfort, ease or possibility of transferring, and poor visual displays. These survey findings are consistent with those from a small study by Mele and colleagues (2005). In extended face-to-face interviews with 20

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The Future of Disability in America women with different kinds of disabilities, the interviewers reported that not one woman could recall having encountered an accessible examination table or weight scale. The women also said that they often found that toilet facilities and entryways were inaccessible. A few studies have examined the views of facility administrators about access. For example, Sanchez and colleagues (2000) compared perceptions of accessibility by clinic managers with the investigators’ direct evaluations of physical accessibility in 40 clinics in a midwestern city. The focus was access for people with spinal cord injuries. Although all the managers reported that their clinics were accessible, direct evaluation showed otherwise. Less than 18 percent of the clinics had an examination table that could be lowered to a standard manual wheelchair-seat height, yet nearly 40 percent of managers reported that their clinics did have such tables. Most clinics did, however, have buildings, examination rooms, and bathrooms that were wheelchair accessible. Another small survey (62 general practitioners, family practitioners, internists, and obstetricians-gynecologists of 220 contacted) asked practitioners about their policies and practices, including physical, communications, and other aspects of accessibility and compliance with the requirements of the Americans with Disabilities Act (ADA) (Grabois et al., 1999). Almost one-fifth of the physicians said that they could not serve some patients with disabilities. Among other reasons, they cited a lack of accessible equipment, which is not an excuse under the ADA, unless accommodation would not be “readily achievable” as described below. With respect to accessible communications, the most common technology reported to be available was audio recordings, which were mentioned by only 15 percent of practitioners. Other researchers found generally similar results in a survey involving chiropractic clinics; moreover, the survey respondents reported that they had few patients with disabilities and saw no need for the clinics to become more accessible (Rose, 1999). These small studies are consistent with the interviews, observations, and experiences reported by Iezzoni and O’Day (2006). In their chapter on health care settings, several headings highlight areas in which people encounter difficulties: getting in the door, getting around inside facilities, and getting on and off examination tables. Another chapter focuses on communications issues, some of which relate to access to information but others of which relate to the knowledge, sensitivity, and respectfulness of health care professionals and support staff and to their ability to see situations “through a patient’s eyes.” Studies of the use and underuse of health care services by people with disabilities generally do not directly assess the effects of physical access problems. Underuse of services may be due to a number of environmental factors in addition to physical access, including a lack of adequate health

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The Future of Disability in America insurance, transportation barriers, and problems with clinician attitudes and competence in caring for people with disabilities. Some studies of the use of health care services by people with disabilities hint at possible physical access effects. For example, an analysis based on the Medicare Current Beneficiary Survey found that disability, especially severe disability, was a significant risk factor for not receiving mammograms and Pap smears but not influenza and pneumococcal vaccinations, which do not require major equipment or equipment modifications (Chan et al., 1999). An analysis of data from the California Health Interview Survey reported that people with a probable disability were statistically significantly less likely than others to have received screenings for breast, cervical, or prostate cancer; the differences for colon cancer screening were not statistically significant (Ramirez et al., 2005). People with a probable disability were, however, more likely than others to report a usual source of care and health insurance coverage, characteristics that usually predict increased use of preventive services. Another study that used data from the Behavioral Risk Factor Surveillance System in 2000 reported that “people with mild and moderate disability received influenza and pneumonia vaccinations somewhat more frequently than people without disabilities, but people with the most severe disabilities least frequently received vaccinations” (Diab and Johnston, 2004, p. 749). A recent review of studies of screening for breast and cervical cancer and osteoporosis concluded that women with more severe disabilities were less likely to be screened than women with mild or moderate disabilities (Smeltzer, 2006). An earlier study with data from the National Study of Women with Physical Disabilities found similar results for pelvic examinations but no differences for mammograms for women with or without disabilities (Nosek and Howland, 1997). Again, these various survey findings could reflect a number of factors other than or in addition to the physical accessibility of facilities and equipment. Public Policies to Improve Health Care Facility and Equipment Accessibility The federal government has taken a number of steps over several decades to make public spaces and buildings more accessible to people with disabilities, first in federal facilities and then in many private facilities that are used by the public. (State policies are not reviewed here.) These policies have had positive effects, although as described below, changes in both the content and the implementation of federal policies would allow more progress. In 1968, the Architectural Barriers Act (ABA) established requirements for accessibility in buildings designed, built, altered, or leased with federal funds. As discussed in more detail below, the Rehabilitation Act of 1973

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The Future of Disability in America created the Architectural and Transportation Barriers Compliance Board (known as the Access Board) to develop and enforce minimum accessibility guidelines (sometimes referred to as ABA guidelines) for federal agencies. Then, in 1990, in a major expansion in the scope of accessibility requirements, Title III of the ADA defined private health care providers as public accommodations (without regard to the receipt of federal funds). Title II of the ADA covers health care facilities and services provided by state and local governments. Health care providers include acute and long-term care hospitals, nursing homes, medical and dental offices and clinics, diagnostic and rehabilitation facilities, and similar providers. For health care providers, the U.S. Department of Justice has enforcement responsibilities related to Title III, and the U.S. Department of Health and Human Services (DHHS) has enforcement responsibilities related to Title II. The U.S. Department of Justice cannot, however, investigate complaints involving state or local government facilities without a referral from DHHS. (See Appendix D for an additional discussion of the ADA in a health care context.) Some general requirements of the ADA (e.g., that services be provided in the most integrated setting appropriate to the needs of an individual with disabilities) apply to all covered entities. Additional requirements apply only to certain service providers, including medical care facilities. In some cases, exemptions from requirements (e.g., for elevators in buildings less than three stories tall) that apply to other facilities do not apply to health care facilities. Some physical access requirements apply only to new construction and remodeling. Others apply to removal of barriers in existing structures when—in the words of the statute—compliance is “readily achievable,” which means “easily accomplishable and able to be carried out without too much difficulty or expense,” taking into account the characteristics of the organization (including its resources) and the nature and cost of the changes in question (U.S. Department of Justice, 1995).2 As might be expected, interpretation of what is readily achievable can be a contentious issue. As noted in Chapter 1, enforcement of the ADA is, to a considerable extent, reactive (NCD, 2000c). It depends substantially on federal agency responses to complaints by or on behalf of individuals who have encountered violations of the law. Complaints can be communicated to enforcement agencies such as the U.S. Department of Justice, or they can take the form of lawsuits. (Complaints to federal agencies may follow unsuccessful 2 In addition to federal ADA accessibility guidelines, the American Institute of Architects publishes broad guidelines in Guidelines for Design and Construction of Health Care Facilities (AIA, 2006). Architects, engineers, and health care professionals use that document in the planning or renovation of health care facilities; and state and federal agencies and the Joint Commission for the Accreditation of Healthcare Organizations use the document as a guide or standard for the review of construction plans or completed facilities.

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The Future of Disability in America complaints to offending institutions.) Many individuals are, however, unaware of their rights under the law, or they lack the financial and other resources to pursue a complaint administratively or through the courts. Also, remedies for violations of ADA requirements may be limited. For example, individuals who successfully sue for violations of Title III public accommodations requirements are entitled only to injunctive relief and not monetary damages (although such a provision was included in draft legislation) (Colker, 2000). Injunctive relief specifies or directs some action by the offending party, such as providing wheelchair access to a restroom or agreeing to provide medical care to a person with human immunodeficiency virus (HIV) infection. If the government brings suit in cases involving a pattern of discriminatory practice in public accommodations, however, it can seek monetary damages or fines (Colker, 2000). In suits involving Titles I and II of the ADA, individuals can seek monetary relief under certain circumstances, although the U.S. Supreme Court has ruled that the Constitution bars monetary damages for state employees (EEOC, 2002; Jones, 2003; see also ILRU [undated]). Also, individuals may be able to seek monetary damages under state law. The argument for allowing monetary damages is that such penalties create stronger incentives for compliance with the law than allowing only injunctive relief. As noted above, the Rehabilitation Act of 1973 created the Access Board, which develops and enforces the ABA minimum accessibility guidelines for federal agencies. It also develops design and accessibility guidelines to help implement the ADA. The Access Board is thus responsible for two broad sets of guidelines, the latest of which were issued in 2004, with some amendments made in 2005 (Access Board, 2005). The original ABA guidelines form the basis for the Uniform Federal Accessibility Standards (issued in 1984). These standards, which apply to federal and federally funded facilities, were developed to minimize differences among earlier standards used by the General Services Administration, the U.S. Departments of Housing and Urban Development and Defense, and the United States Postal Service, each of which has the authority to issue standards for federal agencies under the ABA (Access Board, undated). Another goal of the Access Board and the other agencies involved is to achieve consistency between federal standards and standards set by the American National Standards Institute (ANSI) as far as possible (Access Board, undated). ANSI is a private organization that oversees the development of voluntary standards that affect thousands of products, processes, and services, including medical equipment.3 Also among ANSI products 3 Before the passage of ABA in 1968, ANSI worked with the President’s Committee on Employment of the Physically Handicapped and the National Society for Crippled Children to develop the first national accessibility standards (Beneficial Designs, Inc., 1999). The voluntary

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The Future of Disability in America are human factors standards (developed in collaboration with the Association for the Advancement of Medical Instrumentation) for medical device engineering and design. These standards are intended to promote the easy and safe use of devices based on knowledge of how humans interact with devices and the environment in which the devices are used. A recent review suggested that attention to human factors had increased the accessibility of medical devices for people with disabilities, although that was not the initial intent (Wiklund, 2007; see generally Winters and Story [2007a]). The review cited examples of what it called “user interface design affordances” (accessibility features) (p. 273), including open magnetic resonance imaging scanners that allow access by very large individuals and glucose meters designed with minimal buttons to reduce problems with their use for people with arthritis or other conditions that affect an individual’s dexterity. The review also noted that the medical industry was generally regarded by human factors experts as a “laggard” in adopting both human factors practices and accessibility objectives and that a “disturbing proportion of new [medical] devices still have significant shortcomings” (pp. 273, 278). The development of accessibility standards for medical equipment (as recommended at the end of this chapter) would provide an important supplement to the health care facility standards issued by the Access Board. After passage of the ADA, the Access Board published the first ADA Accessibility Guidelines in 1991. These guidelines cover two broad areas: facility construction and alteration and transportation facilities and transportation vehicles.4 The U.S. Department of Justice has adopted the facility guidelines as standards that it enforces (28 CFR Part 36),5 and the U.S. Department of Transportation likewise has adopted the transportation ANSI standards were first issued in 1961 as a six-page document and were updated and substantially expanded in 1980. 4 In 2004, the Access Board adopted revised ADA Accessibility Guidelines that included additions in several areas, including building elements designed for use by children (Access Board, 2005). Subsequently, the U.S. Department of Justice (2005a) published an advance notice of proposed rulemaking announcing its intention to publish a regulation that would adopt all Access Board amendments to the guidelines issued since 1998, but it had not yet done so by the end of 2006. 5 A 1995 U.S. Department of Justice checklist of “readily achievable barrier removal” for existing facilities lists four priority areas with questions for users and suggested solutions for identified problems (Adaptive Environments, 1995). The priority areas are (1) accessible approaches and entrances (e.g., a route of access that does not include stairs, adequate accessible parking, curb cuts to sidewalks, and an accessible entrance that can be used without assistance); (2) accessible goods and services (e.g., all public spaces and levels are accessible, doors can be opened without too much force, all obstacles in circulation paths are detectable with a cane, elevator controls are properly located, and signs have raised characters and braille text); (3) accessible restrooms (e.g., at least one fully accessible restroom if public restrooms are provided, adequate maneuvering space for wheelchairs inside and outside stalls, and

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The Future of Disability in America guidelines as enforceable standards (49 CFR Part 37). In 2004, after the U.S. Supreme Court decision on the ADA’s application to physical access to state and local courts, the Access Board created a 35-member Courthouse Access Advisory Committee (2006) that recently produced a report with recommendations that covered both courthouse design and the design of courtrooms, jury deliberation rooms, and other spaces. The ADA does not explicitly mention medical equipment, nor do the accessibility guidelines or standards, although they do cover certain equipment (e.g., drinking fountains and toilets) that is found in many types of facilities. Instead, the general nondiscrimination provisions of the statute, which prohibit exclusion, segregation, and unequal treatment, offer an avenue for claims related to inaccessible medical equipment. Several high-profile settlements negotiated by the U.S. Department of Justice have included provisions related to equipment, usually examination tables and lift devices (see the discussion below of the case involving the Washington Hospital Center and other settlements). Nonetheless, neither the general provisions nor the individual settlements provide detailed, authoritative guidance for equipment or facility access. The U.S. Department of Justice has been more visible in the area of communications access, undertaking (in the agency’s words) “an ambitious, nationwide campaign to improve communications access in our nation’s hospitals for people who are deaf, are hard of hearing, or have speech disabilities” and using a consent decree with 10 Connecticut hospitals as a “model for enforcement in other states” (U.S. Department of Justice, 2002b, unpaged). It has also issued a business brief on communicating in hospitals with people who are deaf or hard of hearing (U.S. Department of Justice, 2006a). The committee’s recommendations call on the U.S. Department of Justice to issue explicit guidance for health care providers based on the broader settlements involving the Washington Hospital Center and other organizations. The federal accessibility guidelines and standards have only a few provisions directly related to medical facilities. Dimensional and similar specifications for ramps, doorways, shower stalls, and other architectural features do not differ for hospitals and nursing homes. The U.S. Department of Veterans Affairs (VA) examined provisions of the Uniform Federal Accessibility Standards relevant to the agency’s medical facilities and concluded that they were not adequate for the population served in its medical facilities. It then created a set of supplementary guidelines for barrier-free design that differ in a number of areas from the federal accessibility standards (VA, 2006a). The VA document notes that faucets operable with one closed fist); and (4) other (e.g., accessible drinking fountains and telephones, if they are provided for public use).

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The Future of Disability in America some government accessibility standards for the design, construction, and alteration of buildings (e.g., for acceptable ramp slopes) have been set by using individuals who were younger and stronger than the people served by VA facilities.6 The standards do not specially consider user populations who may be ill, elderly, or new users of wheelchairs or other assistive technologies. For example, as described in the VA document, the standards for showers barely allow the entry of a person in a wheelchair and do not allow maneuvering of the wheelchair or room for other people to provide assistance to the user. For that reason, many of the VA’s guidelines for its own facilities differ from those prepared by the Access Board. Another general study of standards for ramps (which was commissioned by the Access Board) suggested the need for further assessment of standards appropriate for facilities with high proportions of older users (Sanford, 1996). The VA guidelines advise that “100% accessibility makes nursing simpler, puts less strain on staff, gives patients more independence, and requires less patient supervision by a limited staff” (VA, 2006a, p. 5). These observations appear to be applicable to many if not most other health care facilities. Administrative and Judicial Responses to Continuing Problems with ADA Compliance The committee located no formal, systematic nationwide survey or evaluation of compliance with or enforcement of ADA provisions related to medical facility accessibility.7 Reis and colleagues (2004) reviewed U.S. Department of Justice quarterly status reports from 1994 to 2003 and found 114 cases related either to the accessibility of health care facilities (including equipment and communications) or to the denial of service. Almost half (65 cases) involved access to effective communications services by people with hearing limitations. Physical access to facilities or equipment (primarily in medical or dental office settings) was the next most common problem (38 cases). The continued lack of common accessibility features in places where 6 Also, VA hospitals serve a population that is a different and a considerably older population than the population in community acute care hospitals, in which, for example, 11 percent of the admissions are accounted for by childbirth (AHRQ, 2005). These and other characteristics of the population served are reflected in shorter lengths of stay in community hospitals, about 5 days in 2002 (AHRQ, 2005), in comparison with 12.5 days in VA hospitals (Pfizer Pharmaceutical Company, 2003). 7 In a U.S. Department of Justice status report marking the tenth anniversary of the passage of the ADA, the discussion of health care accessibility mentioned services for people with HIV infection or hearing impairments but did not cite any cases related to the physical accessibility of facilities or equipment (U.S. Department of Justice, 2000a).

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The Future of Disability in America people might expect them—notably, hospitals—was spotlighted during the course of this study by the settlement in 2005 of an ADA case involving the Washington Hospital Center, the U.S. Department of Justice, and the plaintiffs (the Equal Rights Center and four individuals) (U.S. Department of Justice, 2005b,e). The scope of the accessibility problem at this major medical center is suggested by features of the complaint and the settlement, as summarized in Box 6-2. The settlement included provisions involving architectural features, equipment, and institutional policies and procedures. On the same day that the Washington Hospital Center settlement was announced, the U.S. Department of Justice announced two other agreements with health care providers. One involved another Washington hospital that agreed to provide appropriate auxiliary aids and services for deaf patients (U.S. Department of Justice, 2005c). In the second case, which involved a group of California radiologists, the department announced that the radiology group had agreed (1) to purchase mechanical lift devices and transfer boards to assist wheelchair-to-examination table transfers; (2) to establish appointment scheduling procedures that include asking people if they need assistance or special equipment or practices and discussing ways to meet their needs; (3) to provide appropriate assistance during the appointment; and (4) to train staff to meet their responsibilities (U.S. Department of Justice, 2005d). The details of a 2001 settlement involving Kaiser Permanente (Meltzer v. Kaiser Permanente) also reveal significant shortfalls in accessibility for people with disabilities in a large, well-respected health care system. In that settlement, the organization agreed to provide accessible medical equipment in its facilities (37 medical centers and 282 medical offices in California), survey its facilities and policies for barriers and remove such barriers or review policies, and provide appropriate staff training (Levine, 2005). Since then, the plaintiff organization has tracked implementation. It recently announced plans (using funds from a foundation grant) to conduct site visits at Kaiser Permanente facilities and offices to review progress and provide consumer feedback (DRA, 2006). The group is also collecting information from consumers on access problems at other California health care facilities. Cases such as those summarized here underscore the fact that health care providers have legal—as well as ethical and professional—responsibilities to provide accessible facilities, equipment, and services. Nonetheless, achieving accessibility remains a long-term vision that will require clear guidance for providers, continuing education and enforcement, and examination of the appropriateness of existing standards.

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The Future of Disability in America BOX 6-2 Highlights of ADA Settlement Involving Washington Hospital Center (U.S. Department of Justice Complaint Number 202-16-120) Allegations Among the problems cited by plaintiffs were “not being placed in an accessible inpatient room; being examined on inaccessible equipment which required them to be lifted onto an examination table; having such lifting performed in an improper manner; having to wait significantly longer than other patients for an outpatient exam because the examination room with an accessible table was occupied; not receiving adequate inpatient services required as a result of a disability, such as assistance with eating, drinking, and having bowel movements; and [a lack of timely receipt of] accessible equipment needed as an inpatient, such as an accessible call button and telephone.” Selected Elements of Hospital Responsibilities Under the Settlement Adopt goal of making 10 percent of inpatient rooms (other than those in the intensive care unit) meet ADA accessibility standards (including having an accessible toilet room); 35 of 600 rooms to be made accessible within 5 years Purchase adjustable-height beds for the accessible inpatient rooms Hold the accessible rooms for patients with disabilities, unless hospital is operating at full capacity Provide each department with at least one accessible examination table Survey all equipment and purchase equipment needed for accessibility (e.g., examination tables and chairs, lifts, wheelchair-accessible weight scales, and radiology equipment) Survey public areas to identify barriers to access and then remove those barriers Review and, if necessary, revise hospital policies related to accessibility (e.g., communications methods for individuals with vision and hearing impairments or cognitive limitations, lifting techniques, service animals, and shuttle bus accessibility) Post information in reception and common areas on ADA rights and remedies for hospital patients and prepare a brochure on ADA for inpatients and outpatients Provide training on equal access for all employees who assist patients, including doctors, nurses, receptionists, orderlies, and admissions staff Establish an advisory group of people with disabilities and appoint consultants to assist with facility and policy reviews, policy development, and training Appoint an ADA equipment expert Appoint an ADA officer and establish a formal, timely complaint process SOURCE: U.S. Department of Justice (2005e).

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The Future of Disability in America RECOMMENDATIONS Expanding Research on Environmental Factors The 1997 IOM report on disability recommended further research on the impact of environmental factors on disability. Some helpful studies have been conducted since then, but the amount of research is still quite limited as discussed earlier in this chapter. Chapter 2 discussed the further work that needs to be undertaken to develop the environmental component of the ICF framework so that the framework can better support research on environmental contributors to disability. It also recommended improving the country’s disability surveillance system by adding measures that will help researchers identify environmental influences on activity and participation and monitor changes over time. Chapter 7 includes recommendations on assistive and accessible technologies as features of the environment, and Chapter 10 presents a recommendation for additional research on interventions to reduce environmental and other factors that contribute to activity limitations and participation restrictions. Policies related to research and science and technology generally are not mentioned in the ICF classification scheme, but they, too, are part of the environmental domain of services, systems, and policies. The conceptual and policy emphasis on the interaction between person and environment that has been endorsed by the IOM, the World Health Organization, and others should be supported by research that evaluates this interaction. Although the federal government, particularly through the National Institute on Disability and Rehabilitation Research, has supported some research on environmental contributors to disability, the committee believes that such research should become a higher priority in all agencies engaged in disability research. General directions for such research include evaluations of population-level data, studies of people’s perceptions of barriers, and observational and interventional assessments of the effects of environmental features and modifications on disability outcomes. In view of the enormous range of environmental factors across the physical, interpersonal, attitudinal, economic, and service and policy domains, an organized process to assess research priorities would be useful. Recommendation 6.1: Given the limited research on the effects of environmental factors on disability, the National Institute on Disability and Rehabilitation Research, the National Institutes of Health, the Veterans Health Administration, the Centers for Disease Control and Prevention, and other relevant agencies should collaborate to develop a program of research in this area. As part of developing such a program, these agencies should

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The Future of Disability in America organize a symposium to engage people with disabilities, relevant governmental agencies, researchers, methodologists, and other interested parties in a collaborative process to recommend priorities for research on environmental factors, as defined in the International Classification of Functioning, Disability and Health; apply these priorities in a plan for outcomes research to investigate the relative effects of different aspects of the environment on disability; and intensify current efforts to improve epidemiological, observational, and experimental measures and methods to assess the effects of specific environmental features on independence, participation, and quality of life over the short term and long term for people with disabilities. A number of criteria may be taken into account in setting priorities for research on the effects of environmental factors on disability (see, e.g., IOM [2003b]). Although few data may be available to guide such assessments, which means judgments may be largely subjective, examples of possible criteria include the importance of an environmental feature as a potential barrier for people with disabilities; the number of people with chronic health conditions or disabilities potentially affected by a particular environmental barrier or set of features; the ethics and feasibility of research, especially interventional research, involving a barrier or feature; the potential of research findings to influence public or private actions to reduce a barrier and improve outcomes for people with disabilities; and the likelihood that such actions might have specific additional positive outcomes or spillover effects (e.g., reducing disparities among people with disabilities; improving accessibility for other individuals; and reducing costs to families, firms, or governments). Improving the Accessibility of Health Care Facilities On the basis of available literature and the committee member’s collective experience as health care professionals and health care consumers, the committee concludes that inaccessible equipment, deficits in communication, and burdensome and inaccessible health care physical plants remain commonplace and create significant barriers to the receipt of timely, high-quality health care by people with disabilities. The enforcement of federal

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The Future of Disability in America accessibility standards in the health care sector is critical, as are education of providers, the implementation of guidelines, and the use of other steps that promote voluntary adherence to the ADA, the ABA, and other laws. The right to access applies to both public and private health care settings, regardless of whether providers participate in federal programs such as Medicare. The committee developed two recommendations that involve actions by both federal agencies and private organizations to make health care facilities more accessible to people with disabilities. Recommendation 6.2: To improve the accessibility of health care facilities and equipment and to strengthen the awareness of and compliance with the provisions of the Americans with Disabilities Act related to accessible health care facilities, the U.S. Department of Justice should continue to vigorously pursue and publicize effective settlements and litigation (if necessary) of complaints of accessibility violations in major health care institutions; the U.S. Department of Justice should issue and widely disseminate guidelines for health care providers that describe expectations for compliance with the accessibility provisions of the act; and the Joint Commission and other organizations that accredit or set federal program participation conditions for health care organizations should explicitly consider compliance with federal accessibility standards and guidelines in making their accreditation and participation decisions. Recommendation 6.3: The U.S. Congress should direct the Architectural and Transportation Barriers Compliance Board (the Access Board) to develop standards for accessible medical equipment to be supported with technical assistance and with dissemination and enforcement efforts by the appropriate federal agencies and to collaborate with the U.S. Department of Veterans Affairs, groups representing people with disabilities, and other relevant experts to assess whether the accessibility standards developed by the Access Board are appropriate for health care facilities serving people with disabilities and an aging population. The first recommendation above calls for the U.S. Department of Justice to pursue a vigorous course of enforcement. Its strategy should include attention to high-profile cases that have a particular potential to underscore the responsibilities of health care institutions to make their facilities accessible to people with disabilities. In addition, it is important that the department do more to make its expectations known. Although it has

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The Future of Disability in America investigated ADA-related access barriers in health care facilities and has reached individual settlements with noncompliant providers, it has not issued comprehensive compliance guidelines or specific technical assistance. Such guidelines or technical assistance would supplement case-by-case enforcement efforts and promote a better understanding by health care professionals and providers of their responsibilities under the law. The guidelines on the provision of services to patients with limited English proficiency are an example of this approach (U.S. Department of Justice, 2002a, see also U.S. Department of Justice [2001]). The committee understands that work on efforts to provide guidance or technical assistance is under way, but it is not clear when such guidance might be issued or when assistance might provided. Once the guidance is published, it should be widely disseminated as part of departmental activities to educate providers on their responsibilities. Beyond the U.S. Department of Justice, many other public and private organizations have roles to play in promoting adherence to accessibility standards in health care facilities as critical elements of the quality and safety of patient care and the rights of patients. For example, the Joint Commission (formerly the Joint Commission on the Accreditation of Healthcare Organizations), which evaluates and accredits hospitals and other health care organizations, states that hospitals should comply with the ADA (JCAHO, undated). Unfortunately, the commission has established specific requirements (under standard RI 1.7) only in the area of communication for people who have hearing and speech impairments. The commission’s description of its “environment-of-care” standards mentions the promotion of a safe, functional, and effective environment for patients, staff, and visitors; but access for people with disabilities is not explicitly cited. In contrast, the Commission on Accreditation of Rehabilitation Facilities (CARF) more directly recognizes barriers to access. Its standards require a written accessibility plan that must address environmental and other barriers identified by stakeholders (Reis et al., 2004). In 2004, the organization published the CARF Guide to Accessibility for use by the facilities that it accredits (CARF, 2004). The Joint Commission and other accrediting groups should move in this direction as well. In general, accrediting organizations and organizations that set criteria for facility participation in Medicare and other federal programs should explicitly consider compliance with federal accessibility standards and guidelines in making accreditation decisions. This might require the development of educational materials, guidance, and standards for facility accessibility that clearly and specifically identify requirements for compliance. Potentially, the Disability and Business Technical Assistance Centers, funded by the National Institute on Disability and Rehabilitation Research to facilitate compliance with the ADA, could also help focus the attention

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The Future of Disability in America of health care facilities on their responsibilities under the statute and associated regulations. Recommendation 6.3 proposes that the Access Board be charged with developing accessibility standards for medical equipment to supplement existing facility standards. As is the case with facility standards, it will be important for other agencies to participate in the dissemination of information about equipment standards, the provision of technical assistance, and the formulation of enforcement policies. Further, the committee is concerned about the conclusion by the U.S. Department of Veterans Affairs that the Uniform Federal Accessibility Standards fall short of ensuring accessibility in the department’s health care facilities. It encourages the Access Board to join with the U.S. Department of Veterans Affairs and others to examine this question and to determine whether certain ADA accessibility guidelines and standards should be revised as they apply to health care facilities. The next chapter goes beyond the consideration of health care facilities and considers more generally the design of accessible technologies, the principles of universal design, and the importance of accessibility in “mainstream” technology that is not intended specifically for people with disabilities. It also examines assistive technologies that are specifically intended to support functioning, independence, and participation by people with various kinds of physical and cognitive impairments. One major challenge for both assistive technologies and broadly accessible general use technologies is securing resources for new product development and commercial distribution. Another is creating health care consumer and health care professional awareness of useful existing technologies.