7
Assistive and Mainstream Technologies for People with Disabilities

As she nears her 70th birthday, Ms. G has increasingly severe arthritis in her hands. She is feeling more and more restricted in her everyday life as daily tasks have become difficult or painful and many products—from the kitchen blender to the little pencils for filling out election ballots—have become hard or impossible for her to use. Recently, during an urgent visit to her physician’s office after she sliced her hand with a kitchen knife, she had to see the practice’s new partner. She explained that the knife had slipped because it was hard for her to grasp it firmly. The doctor asked whether she had heard of the knives and other ordinary household tools that are designed to be easier—and sometimes safer—for everyone to use. Did she have a computer so she could find out more from groups that had practical advice about technologies and other strategies for people with arthritis? Ms. G said she did. The doctor jotted down a note for her and added “You should check out these two web sites for information about equipment and other Internet resources for people with arthritis and other conditions. Unfortunately, though, you can’t buy your own voting equipment.”

As this story illustrates, people with conditions such as arthritis may encounter the myriad technologies of modern life in somewhat different ways than people without disabilities. Doorknobs, kitchen tools, or shirt buttons that do not produce a second thought for most people can become obstacles for someone with arthritis. In turn, a lever door handle substituted for a doorknob may be a significant aid to that individual—and also be welcomed by many others, such as parents juggling packages and children. A simple buttonhook device, although not useful to most people, can assist someone who finds it difficult to manipulate buttons. Thus, although certain technologies create obstacles to independence for people with disabilities, other technologies—some of which are designed to accommodate impairments and some of which are designed for general use—provide the means to eliminate or overcome environmental barriers. These helpful technologies may work by augmenting individual abilities (e.g., with glasses or hearing aids), by changing the general environment (e.g., with lever door handles or “talking” elevators), or by some combination of these two types of changes (e.g., with computer screen readers).



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The Future of Disability in America 7 Assistive and Mainstream Technologies for People with Disabilities As she nears her 70th birthday, Ms. G has increasingly severe arthritis in her hands. She is feeling more and more restricted in her everyday life as daily tasks have become difficult or painful and many products—from the kitchen blender to the little pencils for filling out election ballots—have become hard or impossible for her to use. Recently, during an urgent visit to her physician’s office after she sliced her hand with a kitchen knife, she had to see the practice’s new partner. She explained that the knife had slipped because it was hard for her to grasp it firmly. The doctor asked whether she had heard of the knives and other ordinary household tools that are designed to be easier—and sometimes safer—for everyone to use. Did she have a computer so she could find out more from groups that had practical advice about technologies and other strategies for people with arthritis? Ms. G said she did. The doctor jotted down a note for her and added “You should check out these two web sites for information about equipment and other Internet resources for people with arthritis and other conditions. Unfortunately, though, you can’t buy your own voting equipment.” As this story illustrates, people with conditions such as arthritis may encounter the myriad technologies of modern life in somewhat different ways than people without disabilities. Doorknobs, kitchen tools, or shirt buttons that do not produce a second thought for most people can become obstacles for someone with arthritis. In turn, a lever door handle substituted for a doorknob may be a significant aid to that individual—and also be welcomed by many others, such as parents juggling packages and children. A simple buttonhook device, although not useful to most people, can assist someone who finds it difficult to manipulate buttons. Thus, although certain technologies create obstacles to independence for people with disabilities, other technologies—some of which are designed to accommodate impairments and some of which are designed for general use—provide the means to eliminate or overcome environmental barriers. These helpful technologies may work by augmenting individual abilities (e.g., with glasses or hearing aids), by changing the general environment (e.g., with lever door handles or “talking” elevators), or by some combination of these two types of changes (e.g., with computer screen readers).

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The Future of Disability in America Given the projected large increase over the next 30 years in the numbers Americans at the highest risk for disability, as discussed in Chapter 1, designing technologies today for an accessible tomorrow should be a national priority. Otherwise, people who want to minimize the need for personal assistance from family members or others, who want to avoid institutional care, who want or need to work up to and beyond traditional retirement age, or who have talents to volunteer in society will face avoidable barriers that will diminish their independence and role in community life. Accessible technologies are also a matter of equity for people with disabilities, regardless of age. One of the goals of Healthy People 2010 is a reduction in the proportion of people with disabilities who report that they do not have the assistive devices and technologies that they need (DHHS, 2001; see also DHHS [undated]). Since the publication of the 1991 Institute of Medicine (IOM) report Disability in America, the world of assistive technologies has changed significantly in a number of areas. Perhaps the most dramatic advances involve the expanded communication options that have accompanied the improvement and widespread adoption of personal computers for use in homes, schools, and workplaces. Spurred in part by federal policy incentives and requirements, industry has developed a range of software and hardware options that make it easier for people with vision, hearing, speech, and other impairments to communicate and, more generally, take advantage of electronic and information technologies. In many cases, these options have moved into the realm of general use and availability. For example, people who do not have vision or hearing loss may find technologies like voice recognition software valuable for business or personal applications. Prosthetics technology is another area of remarkable innovation, with research on the neurological control of devices resulting in, for example, prosthetic arms that people can move by thinking about what they want to do (Murugappan, 2006). Research suggests that assistive technologies are playing important and increasing roles in the lives of people with disabilities (see, e.g., Russell et al. [1997], Carlson and Ehrlich [2005], Spillman and Black [2005a], and Freedman et al. [2006]). For example, using data from the 1980, 1990, and 1994 National Health Interview Surveys, Russell and colleagues (1997) concluded that the rate of use of mobility assistive technology increased between 1980 and 1994 and that the rate of increase was greater than would have been expected on the basis of the growth in the size of the population and changes in the age composition of the population. A more recent analysis by Spillman (2004), which examined data from the National Long-Term Care Survey (for the years 1984, 1989, 1994, and 1999), found that the steadily increasing use of technology was associated with downward trends in the reported rates of disability among people age 65 and

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The Future of Disability in America over. Other research, discussed later in this chapter, suggests that assistive technologies may substitute for or supplement personal care. Surveys also report considerable unmet needs for assistive technologies, often related to funding problems (Carlson and Ehrlich, 2005). Findings such as those just cited suggest that the greater availability and use of assistive technologies could help the nation prepare for a future characterized by a growing older population and a shrinking proportion of younger people available to provide personal care. The increased availability of accessible general use technologies is also important. Chapter 6 pointed out that people with disabilities encounter technology barriers in many environments, including health care. As surprising as it may seem, individuals with mobility limitations and other impairments may find that examination tables, hospital beds, weight scales, imaging devices, and other mainstream medical products are, to various degrees, inaccessible (see, e.g., Iezzoni and O’Day [2006] and Kailes [2006]). Chapter 6 urged the stronger implementation of federal antidiscrimination policies and the provision of better guidance to health care providers about what is expected of them in providing accessible environments. Many kinds of technologies, such as medical equipment, voting machines, and buses, cannot be purchased or selected individually by consumers and are, in a certain sense, public goods even when they are privately owned. Their development and accessibility often depend on policies that require or encourage public and private organizations to make environments, services, and products more accessible. Other public policies tackle environmental barriers by encouraging consumer awareness of assistive and accessible products or by helping people purchase or otherwise obtain such products. Yet other policies promote research and development to make all sorts of technologies more usable and accessible to people with different abilities. This chapter examines the role of assistive and mainstream technologies in increasing independence and extending the participation in society of people with disabilities. It also considers how technologies may act as barriers. Many of the topics discussed are themselves worthy of evaluation in separate reports, so the committee’s review has necessarily been limited in scope and depth. The chapter begins with definitions of assistive technology, mainstream technology, and universal design. It then briefly reviews public policies affecting the availability of assistive and accessible technologies, summarizes information on the use of assistive technologies, discusses obstacles to the development of better products and the effective use of existing products, and highlights how mainstream technologies can limit or promote independence and community participation. The chapter concludes with recommendations.

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The Future of Disability in America TYPES OF TECHNOLOGIES USED OR ENCOUNTERED BY PEOPLE WITH DISABILITIES Though coming from quite different histories, the purpose of universal design and assistive technology is the same: to reduce the physical and attitudinal barriers between people with and without disabilities. Story et al. (1998, p. 11) The intersection between technology and disability is a complex topic for a number of reasons. As noted earlier, technology can be a barrier or a means to independence and participation in the community. For some people, technologies, such as mechanical ventilators, allow life itself—as long as systems are in place to protect the users when natural disasters or other events disrupt electrical power, caregiving arrangements, and other essential services. As the term is used in this chapter, technology generally refers to equipment, devices, and software rather than to medications (e.g., drugs to control the potentially disabling effects of epilepsy), procedures (e.g., physical therapy techniques to restore function), administrative systems (e.g., rules and implementing mechanisms for determining eligibility for disability income benefits), or a body of knowledge (e.g., rehabilitation medicine). In other contexts, the term may be used much more comprehensively to refer to some or all these additional areas. Assistive technologies and general use or mainstream technologies, as defined below, may serve similar or quite different purposes in people’s lives. Whether a technology is assistive or mainstream may affect how people acquire the technology. For example, certain assistive technologies, such as prostheses, require a physician’s prescription and expert training in safe and effective use. The distinction may also affect what health plans pay for, as discussed in Chapter 9. In addition, for any given product category, a mainstream or general use technology is likely to have larger prospective markets and thus may be more likely than an assistive technology to attract private-sector innovation and investment without government incentives or rules. Assistive Technology Defined The Technology-Related Assistance for Individuals with Disabilities Act of 1988 and the Assistive Technology Act of 1998, which replaced the 1988 legislation, define an assistive technology device as “[a]ny item, piece of equipment, or product system, whether acquired commercially, modified,

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The Future of Disability in America or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities” (29 U.S.C. 3002).1 This policy definition is extremely broad and can be interpreted to cover a very large range of products—such as Velcro and microwave ovens—that are useful to people with disabilities but that are not specifically designed or adapted to assist them. The broad legislative language intentionally permitted the information and funding programs created by the legislation to cover general use or mainstream products if, for a given individual, such a product worked as well as or better than a specially designed product. Nonetheless, as noted in a report developed for the American Academy of Physical Medicine and Rehabilitation and the Foundation for Physical Medicine and Rehabilitation, “a health plan or program could never include coverage [for assistive technology as defined in the Act] … because the benefit would be completely open-ended” (AAPM&R/The Foundation for PM&R, 2003, p. 9). For similar reasons, most discussions of assistive technology, at least implicitly, focus more specifically on items “designed for and used by individuals with the intent of eliminating, ameliorating, or compensating for” individual functional limitations (OTA, 1982, p. 51, emphasis added).2 Environmental modifications, for example, the widening of a bathroom doorway, are not explicitly covered by the Assistive Technology Act, although equipment (e.g., grab bars) installed during modifications is included. Building modifications are sometimes referred to as “fixed assistive technology,” not all of which involves equipment installations (see, e.g., Tinker et al. [2004]). Assistive technologies can be subdivided to distinguish many kinds of products. For example, personal assistive devices—such as canes, scooters, hearing aids, and magnifying glasses—act, essentially, as extensions of a person’s physical capacities. They often move with the person from place to place. Adaptive assistive devices make an inaccessible mainstream or general use device usable by a person with a disability, although usually at additional cost. One example is the computer screen reader, which allows people with low vision to hear what is shown on a computer screen, for 1 The committee recognizes that all technologies—scissors, wheelchairs, or computers—are assistive in some sense, that is, are tools to serve some human purpose. 2 The statutory definition of assistive technology could be interpreted to include medications (as an “item”), as well as an array of implanted medical devices, such as cardiac pacemakers, orthopedic rods and plates, electronic neurostimulators, artificial joints, and catheters. Although some implanted devices and certain medications may improve functional capabilities, such as the ability to walk, bend, or reach, this report—consistent with most reports consulted by the committee—generally excludes both implanted devices and medications from the definition of assistive technology.

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The Future of Disability in America example, text documents. To operate effectively, computer screen readers require appropriate design of what appears on the screen (e.g., text labels for graphics or photos) (Tedeschi, 2006; see also Vascellaro [2006] and http://www.w3.org). Other examples of adaptive assistive technologies are the hand controls that operate braking and acceleration systems for automobiles. Certain assistive technologies qualify as durable medical equipment under the Medicare statute and regulations. That is, they can withstand repeated use, are primarily and customarily used to serve medical purposes, are generally not useful to individuals in the absence of an illness or injury, and are appropriate for use in the home (42 CFR 414.202). The Medicare statute also mentions certain other categories of assistive products, such as prosthetics and orthotics. In general, insurance plans do not cover assistive technologies, as broadly defined by the Assistive Technology Act. (See Chapter 9 for a discussion of financing for assistive technologies under Medicare, Medicaid, private health plans, and other programs.) In some situations, health plans may pay for a more expensive assistive technology when a less expensive mainstream technology would serve as well.3 For children, assistive devices include adapted or specially designed toys that not only are entertaining and usable but that also make a contribution to their physical and emotional development (see, e.g., Robitaille [2001]). Continued implementation of the Individuals with Disabilities Education Act has focused attention on a range of educational assistive technologies for children with learning and other disabilities (see Chapters 4 and 9). Some of these technologies may also benefit adults with learning or cognitive limitations, increasing their ability to live independently, work, and otherwise participate more fully in community life. Examples of cognitive assistive technologies include visual or auditory prompting devices that provide simple cues to help people perform a task (e.g., prepare food) or remember things that they need to do (e.g., take medications). Other examples include alarm devices that help warn caregivers that someone with dementia or some other cognitive condition may be in danger, tracking devices that use Global Positioning System technology to determine the location of an individual, and simplified versions of e-mail. In addition, although they may be financially out of reach for many potential beneficiaries, a range of new assistive technologies are being developed to take advantage of advances in electronics and computing power 3 Health plans with case management or similar programs or policies will sometimes waive usual policy limitations and pay for a mainstream product for an individual when it is clear that the product will perform at least as well as a specialized assistive product and will be less costly. See NHATP (2001) for an extensive discussion of how consumers can use cost-effectiveness arguments to persuade health plans to pay for technologies that are not normally covered; see also RESNA (2002).

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The Future of Disability in America that have stimulated innovation throughout the economy. Examples of these technologies include communications devices based on the tracking of individual eye movement (e.g., for people with severe speech and movement impairments because of a stroke), complex prosthetic devices that respond to neural impulses, and stair-climbing wheelchairs. As with all technologies, individual and environmental circumstances will influence the usefulness and the availability of specific technologies. Mainstream Technology and Universal Design Defined The term mainstream technology has no statutory definition or precise technical meaning. As the term is used here, it refers to any technology that is intended for general use rather than for use entirely or primarily by people with disabilities. The setting in which a technology is used may determine the classification of a technology. For example, a handrail in a place where one is normally found (e.g., beside steps in a school building) would be mainstream device, whereas a handrail installed along the hallway in the home of someone with mobility limitations would be an assistive device and an environmental modification. Mainstream technologies include such disparate items as pens and pencils, personal computers, kitchen gadgets and appliances, cash machines, automobiles, cell phones, alarm clocks, trains, microwave ovens, and elevators. Some mainstream products, for example, Velcro, were not developed for people with disabilities but have come to have a variety of assistive uses. In some cases, the inclusion of accessibility features in general use products is required under Section 508 of the Rehabilitation Act or other legislation, as described below. Universal design is the process of designing environments, services, and products to be usable, insofar as possible and practical, by people with a wide range of abilities without the need for special adaptation.4 Other common terms for this process are “design for all,” “inclusive design,” and “accessible design.”5 Although “accessible design” might be considered a more inclusive term that encompasses mainstream products or environments with certain adaptations (e.g., wheelchair ramps), the term is often used interchangeably with universal design. Among the most widely known examples of accessible mainstream products cited by proponents of universal or accessible design is a popular brand of kitchen tools and other gadgets that were designed from the start 4 The term “universal design” was coined by the late Ron Mace, The Center for Universal Design, North Carolina State University College of Design. 5 Some suggest reserving the term “accessible design” for design features or processes that meet legal requirements (Erlandson et al., 2007).

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The Future of Disability in America both to be attractive and generally useful and to be easily used by people with limited hand strength or dexterity (Mueller, 2000). In some cases, accessible design may mean the creation of a product or a building that is compatible with assistive technologies (e.g., wide doorways or ramps that accommodate wheelchairs) or that can be easily adjusted for different user characteristics. (See Box 6-1 in the preceding chapter for a list of selected universal design features for health care facilities.) Another path to safer and more useful products is human factors engineering, which considers how people use products and how human capacities and expectations interact with the characteristics of products in different environments. As is also true of universal design, one focus of human factors engineering is the design of products and processes to reduce the opportunity for human error. Human factors engineering often does not consider the capacities of people with visual, hearing, mobility, or other impairments. Nonetheless, its principles and methods can be applied to the design of mainstream and assistive technologies to take into account how people with different kinds of impairments interact with such technologies. Unfortunately, Wiklund (2007) concludes that although the application of human factors standards appears to have made some medical equipment more accessible, “a disturbing proportion of new devices still have significant shortcomings” (p. 273). A recent edited work on accessible medical instrumentation proposed a number of design principles to improve accessibility and safety for a wide range of equipment users, including health care professionals as well as consumers and informal caregivers (Winters and Story, 2007a).6 Desirable product features include easily located device controls with “on” and “stop” buttons that have common, distinctive designs and colors. It must be kept in mind, however, that universal design is a process and not an outcome. In practice, a product or environment that can be used without adaptation by people with every possible kind of physical or mental impairment will rarely if ever be possible. Nevertheless, the process of universal design can significantly extend the range of users for many products and environments. It can also make the use of adaptive assistive 6 In one definition, medical instrumentation is broadly defined to include “any furniture, measuring device, device that comes in contact with or is designed to be manipulated, monitored or read by health care professionals, lay person caregivers or end-user patients themselves as part of the provision or receipt of medical services, interventions or care, and any user-controlled software designed or required to be installed and used in connection with such technology, or any process or control system with which such patients or caregivers must interact in order for medical services, medical information, or treatment results to be achieved, measured or communicated” (Mendelsohn, 2007, p. 65).

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The Future of Disability in America technologies much simpler and less obtrusive. A web page designed so that it can easily be used with computer screen readers is an example. Box 7-1 lists widely cited principles of universal design that may be applied to the planning of products, services, buildings, and environments such as parks and pedestrian spaces. (Story et al. [2003] have prepared a set of performance measures that can be used to assess how well products meet these principles.) Most of these principles are also useful reference points for those designing an assistive device, for example, to make its use simple and intuitive, to limit the physical effort required to use it, and to minimize the opportunity for error or unsafe use. Another principle that appears to guide much accessible design relates to style or attractiveness, that is, giving products pleasing designs that do not invite stigma. In general, the broader the application of universal design principles to products, services, and environments is, the less the need for assistive or adaptive technologies will be. For public technologies, such as voting machines or buses, accessible design is the only method that works, because individuals cannot purchase or choose accessible versions of these kinds of devices on their own. BOX 7-1 Principles of Universal Design Equitable use. The design is useful and marketable to people with diverse abilities. Flexibility in use. The design accommodates a wide range of individual preferences and abilities. Simple and intuitive. Use of the design is easy to understand, regardless of the user’s experience, knowledge, language skills, or current concentration level. Perceptible information. The design communicates necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities. Tolerance for error. The design minimizes hazards and the adverse consequences of accidental or unintended actions. Low physical effort. The design can be used efficiently and comfortably and with a minimum of fatigue. Size and space for approach and use. Appropriate size and space are provided for approach, reach, manipulation, and use, regardless of the user’s body size, posture, or mobility. SOURCE: Center for Universal Design (1997 [copyrighted but available for use without permission; guidelines on file]).

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The Future of Disability in America KEY POLICIES THAT PROMOTE ASSISTIVE TECHNOLOGY AND UNIVERSAL DESIGN OF MAINSTREAM TECHNOLOGIES Both before and since the publication of the 1991 and 1997 IOM reports, the U.S. Congress has taken steps to promote assistive and accessible technologies for people with disabilities. Some policies—notably, the Assistive Technology Act—aim to make different kinds of technologies more available, more useful, and more affordable. Other policies, such as coverage provisions of health insurance programs such as Medicare and Medicaid, do not focus on assistive technology as such but significantly affect access to it (see Chapter 9). Section 508 of the Rehabilitation Act In 1986, responding to the proliferation of copiers, computers, and other electronic and information technologies, the U.S. Congress added the Electronic Equipment Accessibility amendment to the Rehabilitation Act of 1973 (U.S. Department of Justice, 2000b). The amendment directed the General Services Administration and the National Institute on Disability and Rehabilitation Research (NIDRR) to develop guidelines for federal agency procurement of accessible electronic equipment. As described in Appendix F, the Congress responded to lax enforcement of the 1986 provisions with the Workforce Investment Act of 1998. The 1998 legislation requires the electronic and information technologies acquired by federal agencies to be accessible to federal workers and members of the public with disabilities and to do so on the basis of standards developed by the Architectural and Transportation Barriers Compliance Board (known as the Access Board; see the description of the board in Chapter 6). The standards, which were issued in December 2001, establish technical criteria for making electronic technology accessible to people with sensory and mobility limitations. They cover telephones and other telecommunications, computers, software applications, video and multimedia products and applications, World Wide Web-based intranet and Internet information and applications, information kiosks, and office equipment such as copiers and fax machines.7 As described by the U.S. Department of Justice, the standards “cannot—and do not pretend to—ensure that all [electronic and information technology] will be universally accessible to all people with disabilities” (U.S. Department of Justice, 2000b, unpaged). Reasonable accommoda- 7 The law does not require accessibility for equipment that has embedded information technology, such as heating and ventilation system controls, as long as the principal function of the equipment is not information management, storage, manipulation, or similar activities.

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The Future of Disability in America tions will still be necessary in some situations, but more attentiveness to accessibility will limit the need for accommodations. Under Section 508, the U.S. Department of Justice is supposed to oversee federal agencies in conducting evaluations of their activities to assess the extent to which their electronic and information technologies are accessible to people with disabilities. The agency published its last such evaluation in 2000 (U.S. Department of Justice, 2000b). That report noted that Section 508 is “technology centered” and focuses on whether mainstream products meet regulations, whereas other provisions of the Rehabilitation Act (Sections 501 and 504) are “person centered” and focus on accommodations related to individual needs. The National Council on Disability has recommended extending the provisions of Section 508 so that organizations receiving federal funds would be “prohibited from utilizing federal dollars to develop or procure technology that is inaccessible” (NCD, 2000b, unpaged). The council criticizes, in particular, the One-Stop employment centers (funded under the Workforce Investment Act) for not reliably providing or employing accessible information and telecommunications services. In addition, the council suggests that federal and state officials involved in acquiring electronic and information technology need more training in the evaluation of products for accessibility. This committee agrees that these enhancements to Section 508 would contribute to the expansion of accessible electronic and information technologies. Assistive Technology Act of 1998 The Assistive Technology Act of 1998, which replaced a 1988 law and which was reauthorized in 2004 to continue through 2010, is the legislation most directly supportive of assistive technology. It authorizes federal support to states to promote access to assistive technology for individuals with disabilities. For fiscal year (FY) 2006, the U.S. Congress appropriated $26 million for the program. At this level of federal spending, most state programs are funded at levels below the $410,000 minimum grant award specified in the law (ATAP, 2006). Overall, the level of funding is quite low. The 2004 reauthorization shifted the focus of the policy from infrastructure development to direct support for technology access by people with disabilities through financing assistance (loans), device exchange or reuse, and device loan programs. Funds can also be used for training, public awareness, and other programs. Programs cannot pay directly for devices for individuals.

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The Future of Disability in America duce some transfer of technology to the private sector. NIDRR has also funded a center (at the State University of New York at Buffalo) specifically to promote transfer for assistive technologies. Even with government support for product development and applied research, product developers, governmental agencies, and advocates may have to invest considerable effort to identify and attract a private company that is prepared to manufacture and market a product. In the U.S. Department of Commerce survey cited earlier, almost two-thirds of the companies surveyed indicated that they were “passive in their pursuit of new ideas—or not interested at all” (Baker et al., 2003, unpaged). More positively, almost 60 percent said that they would be interested in working with government research and development agencies, although their lack of knowledge of these agencies and their procedures may impede collaboration. Awareness, Adoption, and Maintenance of Available Technologies Consumer Awareness When suitable assistive or accessible products are commercially available, other barriers may still stand in the way of their effective use. At the most basic level, people with disabilities (and their family members) may not be aware of the availability of useful products. In addition, particularly in the case of older people who have gradually developed functional limitations, people may not recognize that they could benefit from assistance (Gitlin, 1995; NTFTD, 2004; Carlson et al., 2005). Also, people who acquire disabilities later in life and who have trouble accepting their situation may see some assistive technologies as stigmatizing, which points to an advantage of accessible mainstream products (NTFTD, 2004). As Caust and Davis (2006, unpaged) have observed, “[p]eople want to believe they are competent and capable and they are happy to ignore the safety risks associated with not using assistive technology, for the sake of appearing competent.” The University of Michigan survey of people with disabilities discussed earlier in this chapter reported that roughly half of the respondents reported that they had received little or no information about assistive technologies. This finding suggests that the needs for information about assistive technologies are going unmet. Among the respondents who did obtain information, about half mentioned health care professionals (e.g., occupational or physical therapists) as the source (Ehrlich et al., 2003). (Many of the technologies reported by respondents, e.g., wheelchairs and hearing aids, require a medical prescription or guidance.) About 15 percent mentioned family and friends as sources of information, and 13 percent mentioned vocational rehabilitation counselors.

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The Future of Disability in America At the time of the survey in 2001, less than 10 percent of the respondents mentioned the Internet as a source of information. With the explosion of Internet resources and increased computer use by older individuals and their family networks, the Internet would likely be cited more frequently today. Internet searches may lead people to resources such as ABLEDATA, Technology for Long-Term Care (www.techforltc.org, which was originally funded by the U.S. Department of Health and Human Services), and other information resources developed by governmental agencies, nonprofit organizations, and manufacturers. Although NIDRR, which administers the Assistive Technology Act of 1998, supports activities to help increase consumer awareness of useful technologies, the agency’s website is (in the committee’s view) not easy to use as a resource to find information about assistive or accessible technologies. Government and support group websites are especially important resources for developing consumer awareness because company advertising and other promotional activities may be very limited for small markets.20 More can be done to ensure that people with disabilities and their families become aware of and educated about the range of technologies that are available to them to meet many of their specific needs. A national task force recently proposed a broad-ranging public awareness campaign “to communicate the existence and benefits of [assistive and accessible technologies], provide mechanisms for consumers to find accessibility features in [other] products, and showcase best practices” in universal design (NTFTD, 2004, p. 43). The committee offers a similar recommendation below. In addition, further investigation of the extent and quality of Internet and other information resources (including support group and industry websites) would be helpful in developing strategies to improve the availability, reliability, and usefulness of the information available online. To the extent that the Internet is the focus of public education and information programs, it is important that policy makers and advocates be alert to gaps in Internet access and use among low-income and other consumers and that they investigate additional strategies that can be used to reach these groups. 20 The direct-to-consumer television advertisements for scooters and power wheelchairs (which prominently mention Medicare coverage) are the exception rather than the rule, but they also contribute to government concerns about fraudulent and abusive marketing. These concerns have provoked various government efforts to curtail abuse; these efforts, in turn, have been criticized by consumer and suppliers as draconian (see, e.g., Jalonick [2006] and RESNA [2006]; see also Chapter 9).

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The Future of Disability in America Guidance for Health Professionals The move from awareness to the acquisition and application of a technology may be as simple as going to a store, buying a new household gadget, and using it, possibly without the need for even simple instructions (e.g., as with an accessibly designed utensil that replaces a similar but less user-friendly device). In the case of advanced prosthetic devices and other technologies, the process may be complex, involving the expertise and guidance of highly trained medical and other specialists in the selection and individual fitting of equipment, the training of the consumer in its safe and effective use and ongoing maintenance, and periodic reevaluation of equipment performance and use. Physicians who specialize in care for people with particular disabilities may be aware of products that require medical assessment and prescription, but they may not always be well informed about household and other products that could benefit their patients. For both simpler and more complex technologies, physicians and other health care professionals should be alert to their patients’ ability to benefit from assistive technologies and be prepared to provide guidance and information or to refer them as appropriate to other information sources. However, even with products requiring medical assessment and prescription, the rapid changes in some kinds of technologies and the introduction or disappearance of products or product models from the market may make it difficult for physicians to track and evaluate specific products. Thus, for example, instead of recommending a particular device, a clinician may determine that a consumer has impaired manual dexterity; evaluate what product features may be relevant, given the individual’s fine motor skills; identify the need for products with features such as large control buttons; and then focus on products with the relevant features. For products that do not require a medical prescription, such as household products, the consumer or a family member may then take the lead in searching for products with the appropriate features. For some types of assistive technologies, personnel who are trained and knowledgeable about product options and selection may be in short supply, as may be the physical locations where products can be viewed and tried. For example, the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) has stated that there are not enough occupational and physical therapists certified as assistive technology practitioners or certified suppliers with the expertise needed to serve people who need powered mobility devices (RESNA, 2005). Likewise the American Foundation for the Blind has stated that a “critical shortage of professionals who are qualified to provide specialized computer skills training to blind and visually impaired people significantly affects their viability in today’s

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The Future of Disability in America job market” (AFB, 2001, unpaged). In yet another arena, the National Council on Disability has observed that it means little to recommend that the role of assistive technologies be considered more fully in the development of individual education plans (under the Individuals with Disabilities Education Act) if no member of the team developing such plans “is familiar with the range of [technologies] available to address desired goals (NCD, 2000b, unpaged). Some consumers find information through state programs that have been funded under the Assistive Technology Act to aid consumers in learning about and acquiring technologies. For example, in a report on state activities funded under the Assistive Technology Act, RESNA (2003) found that the 34 states that provided data reported that they supported or operated 109 assistive technology demonstration centers. States also reported providing information to consumers through the Internet, e-mail, regular telephone and text telephone, and regular mail. Financial Access Particularly for the more expensive assistive technologies, a lack of financial resources can be a significant barrier to the acquisition of an effective, recommended technology. According to the University of Michigan survey of people with disabilities, the percentage of respondents for whom assistive technologies were paid for through public or private insurance (38 percent) was about equal to those for whom their equipment was paid for personally or through family members (37 percent) (Carlson and Ehrlich, 2005). Six percent received their equipment at no cost to themselves. People with low incomes were far more likely than people with higher incomes to report unmet needs for technology. About 23 percent of the survey respondents sought help from an agency in selecting or purchasing equipment, and about 19 percent reported receiving help from an agency (Carlson and Ehrlich, 2005). Most people believed that they did not need agency help, but some said that they did not know an agency to contact. This again suggests the need for a more intensive public awareness effort. As discussed further in Chapter 9, Medicare and private insurance coverage of assistive technologies is limited and often complex. Medicaid programs, for those who qualify, tend to cover a wider range of assistive technologies. This coverage is sometimes provided under waiver programs that do not extend to all parts of a state or to all categories of Medicaid recipients. The rules are often complex for consumers, family members, and even professionals. One option for improving access to assistive technologies is through innovative practices in leasing or rental arrangements. One example is a leas-

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The Future of Disability in America ing arrangement developed by the Center for Assistive Technology at the University of Pittsburgh Medical Center (UPMC) in conjunction with the UPMC Health Plan, a manufacturer of costly power wheelchairs, and a local network of suppliers (Schmeler et al., 2003). The program is specifically designed to make the equipment quickly available to people with rapidly advancing health conditions (e.g., amyotrophic lateral sclerosis) whose use of the equipment may be limited to a period of months. Rather than the Health Plan purchasing a $25,000 power wheelchair for a consumer, the chair can be leased on a monthly basis for a reasonable fee. The fee includes the provision of all maintenance and upgrades as the person’s condition changes. Once that person no longer uses the equipment, it is recycled and re-leased. With the program, people with these conditions have access to equipment much sooner and the health plan claims significant cost savings. The suppliers and the manufacturer do not consider the program to have interfered with their profit objectives because the equipment can be leased repeatedly over several years. A particularly weak point in the chain of effective technology use is coverage for maintaining, repairing, and replacing an assistive technology when necessary. Some users may have the knowledge and physical abilities to repair simple products, but expert assistance will often be required, especially for complex and expensive equipment. In addition, when an effective product is prescribed and is then used and wears out, people often find that their insurance does not provide for replacement or does not provide for replacement frequently enough. Chapter 9 recommends revisions in health plan policies to increase access to assistive technologies and support their maintenance, replacement, and repair. Although the committee did not locate specific documentation, committee members working in rehabilitation reported decreasing numbers of assistive technology clinics and programs within hospitals and reductions in the scope of programs related to reduced rates of reimbursement and other onerous provider payment policies. (See footnote 2 in Chapter 9 on the controversy about restrictions on reimbursements to inpatient rehabilitation facilities.) An analysis of the complex issues of payment for rehabilitation services was beyond the committee’s resources. Still, without mechanisms in place to fit equipment and adapt or train individuals in its proper use, even a potentially very effective assistive technology can fail. Through the Consumer’s Eyes One challenge for health care professionals, family members, and others who may be involved in discussions of assistive technologies is to consider outcomes “through the consumer’s eyes” (see, e.g., Taugher [2004] and Lilja et al. [2003]). Each of these parties may have priorities different

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The Future of Disability in America from those of the individual considering or using an assistive technology (Scherer, 2005).21 For example, from a user’s perspective, a seemingly inferior device may be more practical to use and maintain, may be less obtrusive in social situations, or may otherwise be more acceptable, and thus more effective than a more sophisticated device. Seigle cites the case of a man who had lost both arms in an accident. Robotic arms were created and fitted to the man, but because they were heavy and uncomfortable they stayed on the floor of his closet. When the man asked what he most wanted to do on his own, he answered that he just wanted to be able to go out to a restaurant and drink a beverage without someone having to hold the cup…. In this case, the best assistive technology solution was a long straw. Seigle (2001, unpaged) In reality, although this anecdote highlights the mismatch between a technology and the user, a better solution for this individual would be prostheses that were lighter, more comfortable, and more functional. As described earlier, prostheses are the focus of considerable advanced research that has been given added impetus because of the wars in Iraq and Afghanistan, although cost will limit access to the more advanced devices for many individuals with limited or no insurance. Research and experience suggest that consumer involvement in the selection process (rather than an essentially one-sided prescription by a health care professional) helps avoid later rejection or abandonment of the technology (see, e.g., Phillips and Zhao [1993], Gitlin [1995], and Riemer-Reiss and Wacker [2000]). Abandonment or nonuse of a technology, particularly an expensive one, is a costly and wasteful outcome that contributes to policy maker and insurer concerns about the provision of coverage for assistive technologies and to the adoption of restrictive coverage policies and practices. The committee found no evidence, however, that the rate of abandonment of assistive technologies is higher or even equal to the rate at which people fail to complete or maintain complex medication regimens. RECOMMENDATIONS Creating more accessible environments—whether through the provision of better assistive technologies and improved mainstream products or the removal of barriers in buildings and public spaces—is an important avenue 21 Committee members reported hearing the label “inflictor” applied to professionals who prescribe or select assistive technologies without involving the consumer and considering that person’s views about what will work in his or her own life.

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The Future of Disability in America to independence and community participation for people with disabilities. This chapter has identified needs in two broad areas: the development of new or improved technologies and the better use of existing technologies. The discussion below sets forth three recommendations related to these needs. Chapters 6 and 9 identify additional steps related to regulatory and financing policies. Innovation and Technology Transfer New and more effective assistive technologies are possible. For products with large markets, a good business case for investment in research, development, and production can often be made, although it may still be useful for consumers, policy makers, and others to become more articulate and persuasive in encouraging investment. Unfortunately, many types of assistive technology do not fit this model, and normal market processes fall short in meeting urgent consumer needs. Tackling this shortfall is, however, complex. Although government efforts to promote assistive technology development and commercial applications do appear to have had positive results, the committee concluded that a more detailed exploration of obstacles, possible incentives, and even mandates would be useful. This exploration could build on the analyses cited in this chapter and other related work. It should involve a broad range of participants and should use subgroups as appropriate to investigate issues related to particular barriers, incentives, or product categories and to identify priorities for new public investments in the development and evaluation of assistive and accessible technologies. As recommended in Chapter 9, it is also important to undertake research to support coverage decisions for assistive technologies based on evidence of effectiveness. Recommendation 7.1: Federal agencies that support research on assistive technologies should collaborate on a program of research to improve strategies to identify, develop, and bring to market new or better assistive technologies for people with disabilities. Such research should involve consumers, manufacturers, medical and technical experts, and other relevant agencies and stakeholders. As noted in this chapter, some helpful steps have been taken to increase government support for technology development and transfer. Funding for the Rehabilitation Engineering Research Centers program, for instance, almost doubled between FY 1999 and FY 2001 but has recently dropped back slightly. Additional research by NIDRR, units of the National Institutes of Health, the National Science Foundation, and other relevant agen-

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The Future of Disability in America cies is needed to identify both new technologies and strategies for getting effective products to consumers. Research into better methods to develop and bring to market effective new technologies needs to extend beyond “high-tech” technologies. Strategies to promote research and commercial development to improve relatively “low-tech” but common equipment, such as walkers, are also important. Another topic for research is the role of legislation, including existing policies such as the ADA and Section 508 of the Rehabilitation Act, in providing incentives to industry by enlarging the market for accessible technologies. One study that examined patent applications in an attempt to assess the impact of the ADA on assistive technology development found that although references to civil rights laws were not typical in patent records, applications mentioning the ADA increased after passage of the act (Berven and Blanck, 1999). That study, which examined patent applications from 1976 through 1997, found a substantial increase in the numbers of patents related to various kinds of impairments over the entire period but did not note a particular spike after the passage of the ADA. Accessible Mainstream Technologies As described earlier in this chapter, public policies have sought to make some mainstream products more accessible, particularly telecommunications and other electronic and information technologies. Some of these policies apply only to government purchases. The ADA focused on reducing certain kinds of environmental barriers and setting standards for the accessibility of buildings, transportation systems, and other public spaces. Although that law and accompanying regulations covered some products that are often installed in buildings (e.g., ATMs), many other mainstream products that are not covered by the ADA or other policies also present substantial barriers to people with disabilities. With an aging population, inaccessible mainstream products will present increasing burdens and costs to individuals with disabilities in the form of reduced independence and reduced participation in the community. This, in turn, will create costs for family members and other caregivers and for society in general. As with the policies discussed in other chapters, further actions to remove barriers and expand access to helpful technologies will have to be assessed in relation to other pressing demands on public and private resources. Recommendation 7.2: To extend the benefits of accessibility provided by existing federal statutes and regulations, the U.S. Congress should direct the Architectural and Transportation Barriers Compliance Board (the Access Board) to collaborate with relevant public and private groups to develop a plan for establishing accessibility standards for

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The Future of Disability in America important mainstream and general use products and technologies. The plan should propose criteria and processes for designating high-priority product areas for standard setting; identify existing public or private standards or guidelines that might be useful in setting standards; and include medical equipment as an initial priority area. This recommendation proposes a priority-setting process to extend the accessibility policies of the federal government to new product areas. Such a process would take industry concerns as well as consumer and health professional concerns into account and would also consider technical issues in setting standards for different kinds of products. Taking into account the issues discussed in Chapter 6, the committee identified medical equipment as a priority area. It also identified home products and product packaging as particularly important for helping people maintain the most basic levels of independence in activities of daily living. Among the criteria that might be considered in a priority-setting process are the numbers of people likely to be affected by a product and related standards, the potential for standards to improve product accessibility, and the potential for standards to have unwanted effects, such as sharply increasing costs and discouraging innovation. Increasing Public and Professional Awareness Discussions of assistive technology generally focus on the development of new and better assistive and accessible technologies and on better insurance coverage. An equal need (also acknowledged in the 1991 IOM report on disabilities) exists to make sure that people with disabilities and those close to them are aware of existing products or product categories, especially products that may not be mentioned or prescribed by health care professionals. Increasing consumer and professional knowledge about assistive technologies should increase the use of the products, which should, in turn, make the market for such products more attractive to private companies, promote greater product diversification, reduce the costs of some products, and generally increase product availability. The committee believes that a substantial national program to increase the awareness, availability, and acceptability of assistive technologies and accessible mainstream technologies is timely, given the demographic changes in the United States noted earlier in this report. The objectives would be to assist the people with disabilities, family members and friends, and health professionals in learning about (1) the existence and range of potentially beneficial mainstream and assistive technologies and (2) the ways in which

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The Future of Disability in America consumers and professionals can obtain additional, up-to-date information about available technologies and products. A campaign can build on the information provision efforts already undertaken by NIDRR and other federal agencies and upon the particular expertise of the Centers for Disease Control and Prevention in developing and managing public and professional awareness programs. In addition, state public health programs are natural partners in developing and implementing an awareness campaign. The campaign can also build on ideas suggested by the National Task Force on Technology and Disability in its draft report (NTFTD, 2004). Recommendation 7.3: The Centers for Disease Control and Prevention, working with the National Institute on Disability and Rehabilitation Research, should launch a major public health campaign to increase public and health care professional awareness and acceptance of assistive technologies and accessible mainstream technologies that can benefit people with different kinds of disabilities. Increasing Public Awareness The consumer component of a public awareness campaign would target not only the lack of knowledge about available technologies but would also help people assess whether they have developed functional deficits for which helpful products exist. The campaign would include guidance for people on recognizing their potential needs for assistive technology; finding useful information about available technologies and their pluses and minuses; identifying and evaluating specific products; locating sources of financial assistance; and working with health care professionals, suppliers, manufacturers, and others to obtain, maintain, adjust, repair, or replace equipment. In some cases, people are aware of products but consider them unattractive or stigmatizing, which can be a major barrier to their use. A large-scale, long-term, repetitive public media campaign to increase the acceptance of assistive technologies can highlight what products are available to “make life easier” and convey that it is normal to use smart technologies. Promotions might show celebrities using technologies and natural-looking aids. Another strategy might be to persuade the producers of popular television programs to show the unobtrusive, routine use of assistive technologies. The idea is to help people feel more comfortable using technologies that may allow them to live independently longer or to stay with their

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The Future of Disability in America families longer by reducing the amount of informal caregiving needed. If a public awareness campaign identifies unattractive product design as a problem, then that knowledge can also guide contacts with manufacturers and designers about how to modify the products to reduce this barrier to the use of helpful technologies. Increasing Professional Awareness In contrast to medications, getting assistive technologies to those who could benefit from them requires more than a physician’s prescription. The process also involves the broader spectrum of rehabilitation professionals, such as physical and occupational therapists. Current data suggest that the primary source of information regarding assistive technologies is physicians and other medical personnel (Carlson and Ehrlich, 2005). It also suggests that many people are also unaware of their options. Nonetheless, in the committee’s experience, the lack of awareness by health care professionals (especially those who are not rehabilitation specialists) of the range of assistive technologies and their potential uses is a significant barrier to the wider and more effective use of these technologies. Remedying this lack of awareness will involve efforts on several fronts, including the undergraduate, graduate, and continuing education of health professionals. The committee recognizes that space is at a premium in heavily loaded and tightly structured professional training curricula. Strategies need to be identified to provide quick, interesting, and effective means of injecting information about helpful technologies and methods of assessing consumer needs into education programs. Health care professionals themselves generally do not need to be experts in the technologies; rather, they need to know, in general, what exists that might help their patients or clients and what basic features of a technology are important for a given patient (e.g., features for people who lack fine motor skills). With this basic knowledge, physicians and other health care professionals may continue their education about particular technologies on their own, designate staff to become resources, or encourage their patients or clients to investigate technologies that do not require a physician prescription or particular professional assistance. In sum, increasing consumer and professional awareness of useful assistive and accessible technologies should have a positive effect on the use of these technologies and, in turn, on people’s functioning and independence. As noted throughout this chapter, the acquisition of useful technologies may be limited by a lack of insurance coverage or other financial access, particularly for people with modest or low incomes. The next two chapters discuss selected issues related to the financing of health care services for people with disabilities.