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Telecommunications and Rural Americans with Disabilities:
An Overlooked Frontier

by:  Alexandra Enders & Tom Seekins, The University of Montana Rural Institute, Rehabilitation Research and Training Center on Disability in Rural Communities, (RTC: Rural), 52 Corbin Hall, Missoula, MT 59812-7056  | rural@ruralinstitute.umt.edu

(NOTE: Acronyms list is included at the end of this paper)

Contents:

Introduction

Rural Disability Demographics

Rural Disability and Rehabilitation

Including Disability in Telecommunications Data Collection

Most Rural Disability Issues are Common Rural Issues

Access: Both Physical and Economic

A Brief History of Telecommunications Access for Individuals with Disabilities

    Barriers to Telecommunications and Design Solutions

    Legislative History

    Other Legal Protections for Access

Access and Equity

Developing Rural Disability Advocates

Appendix A: Legislation Related to Disability and Telecommunications

Appendix B: Health Professional Shortage Areas

Appendix C: Reference Citations

Appendix D: Acronyms

Introduction

A well developed national information infrastructure promises enormous potential benefits for rural America. Similar visions exist for its impact on Americans with disabilities. However, there has been little if any systematic investigation of the issues at the intersection of rural telecommunications and people with disability. There is virtually no analysis of the potential impact, either beneficial or harmful, of information highway access, usability, and potential exclusion on the lives of rural Americans with disabilities. Disability has been an overlooked frontier on the rural telecommunications agenda.

Access to telecommunications has been of concern to people with disabilities since the invention of the telephone. (TAAC p.5) With the increased importance of telecommunications in modern life, the concern has escalated. Many of these concerns are not just rural issues. However, they will have a disproportionate effect on rural citizens. Where in urban areas, there are likely to be more "watchdogs", better organized, looking after disability access issues; in rural areas, the damage may be inadvertently done by the time local people recognize the relevance of the issue.

The NII is intended to deliver to all Americans the information they need, when and where they need it, at affordable rates. There is an absence of available policy analyses on National Information Infrastructure applications for rural Americans with disabilities. In the absence of a unifying framework for strategic analysis, it is difficult to develop an organized approach to matching resources to problems or opportunities.

To date research has analyzed and policy development has emphasized national rural telecommunications infrastructure, services, and impact. Research and policy analysis has also investigated national telecommunications policy for persons with disability. (NCD, 1996) It is puzzling that there is so little written about the intersection of rural telecommunications and disability. Telecommunications applications in business, education, health care, etc are often cited as powerful rural development tools. But the intersection of economic development and disability services like vocational rehabilitation, is itself in its infancy, and largely emerging from work of the NIDRR sponsored RRTC on Rural Rehabilitation Services at the University of Montana. Despite the fact that the word "rural" and the word "disability" are both frequently listed in the groups of people whose needs should to be specifically targeted in NII planning, they appear to be regarded as discrete groups with little if any overlap.

In order to anticipate and plan for the consequences of information technology innovation in rural America as it affects people with disabilities, disability-related issues need to be incorporated as integral components of all aspects of rural telecommunications applications ­ economic development, employment, community development, education and life-long learning, wellness and health care, recreation, etc.

Disability brings an additional issue to telecommunications discussions, physical access, which will be discussed later in this paper. There are significant issues in telecommunications that could impede both physical and economic access for people with disabilities living in rural areas. As research is undertaken which can support integrated policy and program recommendations to remove barriers and maximize inclusion for all rural Americans, disability-related factors need to be carefully integrated into the research agendas across topics and across agencies.

Disability is not an add-on issue, and rarely should it stand alone. Congressional findings, in the 1992 Rehabilitation Act amendments, include the statement that: "disability is a natural part of human experience" and in no way diminishes the right of individuals to live independently; enjoy self-determination; make choices; contribute to society; pursue meaningful careers; and enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society" (PL 102-569) In the same law, Congress also found that "individuals with disabilities constitute one of the most disadvantaged groups in society", "millions of Americans have one or more physical or mental disabilities and the number of Americans with such disabilities is increasing" and that "the goals of the Nation properly include the goal of providing individuals with disabilities with the tools necessary to make informed choices and decisions; and achieve equality of opportunity, full inclusion and integration in society, employment, independent living, and economic and social self-sufficiency, for such individuals." Rural telecommunications is a very important tool for achieving these national goals.

When developing this paper, we initially started documenting the various projects underway related to rural telecommunications and disability. However, we came to the conclusion that it was more relevant to provide background on disability and telecommunications access issues, and to concentrate on 3 priority issues:

[1] the need to incorporate disability in all the other rural telecommunications agendas,

[2] the need to include people with disabilities into the telecommunications awareness and training projects for rural citizens, and

[3] the need to include disability categories in the ongoing data collection and analysis of telecommunications penetration and utilizations, and needs assessment.

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Rural Disability Demographics

Disability and rehabilitation are a significant, though often overlooked, part of the complex rural American situation (Seekins, 1995). Researchers point out that rural Americans account for a greater proportion of chronic disease and disability than urban populations, but have fewer services or resources to address their issues (Coward & Cutler, 1989; DeFriese & Ricketts, 1989; Reeder, 1996).

While there is no universally accepted definition of disability that has been regularly applied to determine the prevalence of disability in the country, various estimates (e.g., Norton & McManus, 1989; Rojewski, 1992; National Center for Health Statistics, 1986) consistently point to higher rates in rural areas. Table 1 presents the most recent estimates published by McNeil (1993). This table shows that there are 12.5 million people of all ages with disabilities who live in non-metropolitan areas; a higher proportion (23%) than those who live in urban areas (18%). Importantly, over 6 million of these people report a severe disability.

There are several reasons for a disproportionately higher rate of disability in rural areas. First, many rural occupations are among the most physically dangerous and produce high rates of injury. Second, there is a tendency for better educated individuals to leave rural areas for employment in cities. This migration pattern leaves a higher proportion of less well educated people working at dangerous occupations, potentially contributing to a higher injury rate. Third, the proportion of older Americans in rural areas is higher than in urban areas, and rates of disability increase with age. Fourth, medical and other support services that may mitigate against disability are less available in rural areas. Fifth, the environmental infrastructure is less well developed in rural areas and may contribute to reported limitation. And finally, poverty is highly associated with disability, and poverty rates in rural areas is disproportionately high, equivalent to that found in our nation's central cities.

Table 1. Demography of Disability in Urban and Rural America Description of Table

(Estimates based on McNeil, 1993)

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Rural Disability and Rehabilitation

There has been ample data documenting the fact that providing rehabilitation services to individuals with disabilities living in rural areas presents special problems (Jackson, Seekins, & Offner, 1992; Offner, Seekins, & Clark, 1992; Rojewski, 1992), and that research on rural rehabilitation is needed to develop contextually relevant strategies for helping rural consumers (Offner, 1990; Rehab Brief, 1990). Two studies conducted by the Arkansas Rehabilitation Research and Training Center (Leland & Schneider, 1982; Omohundro et al., 1983) provided some of the first documentation that persons with disabilities living in rural circumstances are disadvantaged relative to their urban counterparts in economic, educational, and vocational areas.

More recently, the Research and Training Center on Rural Rehabilitation (RTC:Rural) has conducted national surveys of adults with disabilities, rural independent living centers, rehabilitation hospitals serving rural areas, and vocational rehabilitation counselors. These studies continue to point to the problems posed by limited resources and limited access. For example, Arnold, Seekins, and Nelson (in press) found that rural vocational rehabilitation counselors reported significantly more problems, but fewer resources for assisting people with disabilities to find employment.

Like employment, independent living for many persons with disabilities in rural areas is characterized by significant problems associated with severe isolation, general unavailability of health and human services, widespread inaccessibility, and limited financial resources to obtain social services (Nosek & Howland, 1992; Jackson, Seekins, & Offner, 1992; Seekins, Ravesloot, & Maffit, 1992). Despite these problems, our own research has found that IL services are available in only about 30% of the nation's 2,400 rural counties (Ravesloot & Seekins, 1989; Seekins, Ravesloot, Jackson, & Dingman, 1990).

Documentation that rural settings pose identifiable and significant problems for the adaptation of persons with disabilities dates back 30 years in the rehabilitation literature (e.g., Bitter, 1972; Bitter & Kunce, 1972; Daniels, 1967; Davis, 1968; Goodyear, Bitter, & Micek, 1973; Hansen, 1972; Hulek, 1969; Hutchinson, 1970; Janzen et al., 1969; Mannino, Rooney, & Hassler, 1970, Baker, et al.1986) have even noted the diversity of injury and disability produced by rural environments.

Generally, the concepts of rehabilitation have been developed for urban environments, with professional manpower training and experiences being aligned with urban service models and conceptualizations (Lowrey, 1980; Offner, 1989). Therefore, viable approaches to rehabilitation in rural areas are often limited by the assumption that the delivery of appropriate rehabilitation services is contingent on the availability of traditional resources and urban environmental features (Offner, 1990). For example, Seekins, Ravesloot, and Maffit (1992, p.14) noted that:

While urban models of IL services are relatively well established, they may not easily generalize to rural areas. For example, programs may have to serve areas significantly larger than one contiguous community (i.e., city and surrounding suburbs) because of the sparse population and great distances. That poses great difficulty to developing local community identity and support. Similarly, it may be extremely difficult for consumers to come together to manage programs or participate in peer groups.

Advocates for telecommunications and many policy makers have argued that recent advances in technology will go a long way to solving the age-old problem of distance experienced by rural residents. But that assumes that rural problems can be solved by linking with urban answers. It also assumes widespread access to telecommunication, but recent analyses show that people in rural areas, especially those with low incomes -- and people with disabilities are often poor -- are the least likely to have access to such technology (McConnaughey, Nila, & Sloan, 1995).

The allure of high-tech solutions is tantalizing, but the reality is often more ambiguous. There is a paucity of information and descriptive models of use by rehabilitation service providers and consumers. A need exists to assess and systematically monitor the availability of, access to, and use of telecommunications technology by people with disabilities and those who serve them. Such data will clarify important questions such as: Who has access to what types of telecommunications? How are telecommunications used? What are the obstacles to access and use? Who needs better access? What type of access is needed and under what conditions? which will allow assessment of current rural adoption of and access to telecommunications and determine efficacious approaches to increasing usage through policy and practice refinement.

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Including Disability in Telecommunications Data Collection

Falling Through the Net II: New Data on the Digital Divide (McConnaughey, et.al) http://www.ntia.doc.gov/ntiahome/net2/ , and its predecessor Falling Through the Net: A Survey of the "Have Nots" in Rural and Urban America, (McConnaughey, et.al) provide excellent data on telecommunications penetration from the 1994 and 1997 CPS surveys. Rural information is readily available, as well as income, age, race, etc. However there is no information on disability to use for comparative purposes. Because there was a disability supplement to the CPS in 1994, we had hoped to be able to cross tabulate the information. However, because the disability supplement and the telecommunication supplement were not done in the same month, this is not possible. This is another frustrating area, where we can get some information on disability, and some information on rural, but have no way to connect rural and disability for accurate analysis.

In the March 13, 1998 Executive Order establishing a National Task Force on Employment of People with Disabilities, " (f) the Bureau of Labor Statistics of the U.S. Department of Labor, and the Census Bureau of the U.S. Department of Commerce, in cooperation with the Departments of Education and Health and Human Services, the National Council on Disability, and the President's Committee on Employment of People with Disabilities shall design and implement a statistically reliable and accurate method to measure the employment rate of adults with disabilities as soon as possible, but no later than the termination of the Task Force [July 26, 2002]. Data derived from this methodology shall be published on as frequent a basis as possible."

This new method should make the CPS a more useful tool for collecting disability-related information, which can be cross referenced to urban-rural counts. In the meantime, Jack McNeil of the Census Bureau suggests (personal communication, 8/98) asking the Census Bureau to include the NTIA CPS questions in the SIPP, since it has an urban-rural breakdown, and more useful information on disability. Since the NTIA questions have already been on the CPS, they would not need testing by the Census Bureau.

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Most Rural Disability Issues are Common Rural Issues

Telecommunication innovation is transforming the nature of linkages of rural places to urban economies. Cyber-linkages will look different; but physical links will still need to exist, something that cyber-visionaries sometimes lose sight of in their utopian predictions. As the 1997 UPS strike showed us: you still need the a real truck to deliver the LL Bean trousers. We still need a real truck from the home medical supplier to deliver a hospital bed and oxygen. Rural advocates share a mutual concern that the rural economic base could be all too easily eroded by cyber-neighborhood connections. You can get support and ideas from anywhere in the world online, but until teleportation is invented, you cannot get "realia" through the web. You might be able to get the stuff drop-shipped to your physical door, with all the rest (fitting, training, follow-up) done online, but we have to remember that we still live in a world of physical reality; and losing local delivery capacity will be the death of rural communities. Development and maintenance of local capacity and expertise can too easily be eroded in rural areas. We share the concern that fragile rural infrastructures, e.g. health care, can be permanently weakened by urban inroads via telecommunications into local territories which are now only tenuously supporting local capacity. (If the map of Health Professional Shortage Areas (see Appendix B) is bleak for primary care, one can only imagine what it would look like for professionals with expertise in rehabilitation and disability related services!) Local rural service and supply structures will need to be rethought in order to survive in a cyber-driven economy. Disability-related services need to be a part of the new infrastructures, and they need to have built-in flexibility and be developed in ways that reflect current disability paradigms. For example, the only direct experience some rural economic developers have had to disability is as an employment-base via institutions and sheltered workshops in small towns. The ED specialists may resist transformation of these outmoded models of disability services, because of loss of service jobs in the local rural economy. Instead of participating in the development of more appropriate community based support systems for everyone, they may continue to see people with disabilities only as an entity to be serviced, a service industry which creates local jobs. If ED specialists are not exposed to the newer ways of thinking about citizens with disabilities, they will not recognize that individuals with disabilities are potentially viable part of the workforce, people who could work in the community, and play an active participatory role in economic and community development.

As telecommunications transform rural communities, the same kind of conceptual paradigm shifts will need to occur, in order to develop a locally supportive infrastructure that includes all its citizens. Providing a person with a mobility disability with some kind of separate linked in wireless access to the distance learning center, while other community members are assembling upstairs to participate together in the evening's program is exclusionary at best.

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Access: Both Physical and Economic

Both the telecommunications and the disability communities need to adopt a mutual understanding that access is both economic and physical, and that the two aspects are inextricably linked. Access, as in "universal service" or "universal access", in telecommunications is generally understood to be economic. This leads to confusion in discussions related to disability, where access has been generally understood to be physical. A person has to be able to physically get to the equipment in order to use it ­ if the only community access to the internet is located in a room up four stairs, a person using a wheelchair will not be able to access it. If the distance learning center in the small town high school was installed in a room on the second floor in a building with no elevator, a person who cannot climb stairs has no access to the educational programs on the network. There are physical access issues for people who have difficulty seeing a visual display, or hearing the words of a spoken menu in an automated answering system. Graphical users interfaces have created access barriers for people who use a screen reader with voice output to read a display monitor; (GUI's also create problems for people with slow online connections, and pokey computers). Complex displays on telecommunications equipment create confusion for people with cognitive disabilities, and for many of the rest of us too. Manipulation of control buttons are also a part of physical access. Specific challenges presented are being addressed both by mass market companies and through the use of specialized equipment customized to the needs of an individual. E.g. a farmer who has lost his hands can use speech input software for the computer, available from any of a number of companies,

The concept of access as a physical phenomena may be easier to understand in a rural context, but it is surprising how often access is overlooked as an issue until after the equipment has been installed and service is started; and no resources remain for retrofitting the access that should have been inexpensively built in to the original installation.

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A Brief History of Telecommunications Access For Individuals With Disabilities

Section 2. Telecommunications Access Advisory Committee Final Report, January 1997 http://trace.wisc.edu/docs/taac_final_rpt/taac_rpt.htm   describes some barriers individuals with disabilities have encountered in accessing telecommunications as well as some actions the telecommunications industry has taken to make telecommunications equipment accessible prior to the enactment of the Telecommunications Act of 1996. It also provides an overview of telecommunications policy addressing some of these issues. The next section is excerpted from the final report:

Barriers to Telecommunications And Design Solutions

"Access to telecommunications has been of great concern to people with disabilities since the invention of the telephone. Initial advocacy efforts came from people who are deaf and hard of hearing. In the mid-1960s, a fundamental barrier -- the lack of a visual alternative to voice communication by people who are deaf -- began to fall with the invention of an acoustic coupler that allowed teletypewriter signals to be sent and received through the telephone network. AT&T and others donated teletypewriters and a volunteer organization of telecommunications workers, the Telephone Pioneers, worked with the deaf community to assist in bringing this technology to those who needed it. This demonstrated how industry and persons with disabilities can work together, given the opportunity.

"Since the early 1970s, several telecommunications companies have initiated and supported the development of a number of access technologies. The application of Baudot technology (both TTY hardware and the protocol) to text terminals for deaf, hard of hearing, and speech disabled users, and its dissemination, was a principal focus of their efforts in this area. In addition to general initiatives, some of these companies provided case-by-case custom support for telecommunications functions for people with disabilities, including special assemblies, such as on-hook/off-hook switches that could be controlled by light touch, puff and sip, and electronic environmental controls. These products enabled many persons with disabilities to live more independently. The Telephone Pioneers published and distributed the first compendium of telecommunications accessibility tools known as the "Green Book."

"In the late 1970s, consumers began to take their concerns to state utility commissions and legislatures. The state of California took the lead by assessing a line charge to finance the lending of TTYs. This program was later extended to other specialized customer premises equipment used by people who are hard of hearing as well as those with speech disabilities, and those experiencing other problems with telephone access.

"In the 1980s, a number of telecommunications companies began efforts to maximize access for persons with disabilities. First, they participated in state equipment distribution programs for people with disabilities. Second, many companies participated in the initial efforts to establish telecommunications relay services (TRS). Finally, several companies initiated research in speech recognition technology that would offer new input and output opportunities for people who had speech, vision, and physical limitations.

"The hearing aid compatibility standard grew out of a characteristic of older telephone receivers. These receivers leaked magnetic signals that could be picked up by a small coil in the hearing aid. This eliminated acoustic background noise and thus improved audibility of speech. When manufacturers switched to newer, more efficient receiver designs, the inductive coupling was no longer possible. This spurred a decade-long advocacy effort to achieve hearing aid compatibility in all telephones, and which resulted in the development of the EIA Standard RS-504, first issued in 1982, which established formal criteria defining the magnetic field intensity from a telephone receiver, and the Hearing Aid Compatibility Act of 1988. (The details of the HAC Act are discussed in the legislative history section of this report.)

"In general, solutions to telecommunications barriers had focused primarily on adaptations to inaccessible equipment and the provision of specialized customer premises equipment. Lately, some service providers and manufacturers have become aware that solutions to barriers for individuals with disabilities are sometimes of benefit to a wider range of customers as well. For example, the vibrating pager is accessible to deaf persons but it also means the pager won't interrupt an important business meeting. The voice-activated telephone dialer can be used by someone with limited use of her hands as well as a driver who wants to place a call on her cellular phone without taking her eyes off the road. The voice-output Caller ID device is usable by a blind person and, at the same time, allows identification of the caller without having to leave the dinner table to see the device. These and similar designs are examples of the application of universal design principles: that is, incorporating features in the product itself to make it more usable by a wider audience.

"By the 1980s, telecommunications and customer premises equipment had become much more diverse. Some of the new technologies improved accessibility and offered new functionality. With the diversity, however, came a new array of access problems. For example, the proliferation of facsimile created a new barrier to people with low vision or blindness. At the same time, ongoing problems with access to the voice network led deaf individuals to advocate for telephone relay service in their states and ultimately nationwide, through Title IV of the ADA.

"As the convergence of telephone, computers, and television technologies began to escalate in the late 1980s and early 1990s, individuals with disabilities began to realize both the tremendous potential of technology and the potential for setbacks in accessibility. Of particular concern was the impact of these technologies on employment and participation in the mainstream of technology. For example, the marriage of computers and networks brought the graphical user interface, an inaccessible interface for people who are blind, into the world of telecommunications, extending its importance as a tool in the workplace.

"As a result, consumers with different types of disabilities focused on telecommunications advocacy, with the goal of ensuring that telecommunications and customer premises equipment would be as accessible as possible.

"Developing accessibility guidelines for the new generation of telecommunications and customer premises equipment poses a series of issues for both the industry and individuals with disabilities. For example, with the rapid pace of technological innovation within the telecommunications industry, individuals with disabilities are concerned that new technologies be accessible so that they can compete in the workplace. Moreover, as technology becomes commonplace in the American lifestyle, individuals with disabilities need to know if they will be able to use such equipment, or if it will be useable with specialized customer premises equipment. Also, how will individuals with disabilities know if a particular piece of equipment meets their needs? These issues are discussed in this report.

"The telecommunications industry also has concerns with the implementation of section 255. A key issue for industry is how the criteria of readily achievable can be applied to telecommunications of equipment accessibility. Industry is also concerned with how to develop accessible products without discouraging innovation and thus putting them at a competitive disadvantage within the marketplace. Finally, there is a concern about what will happen if industry can make a given product accessible to some, but not all disabilities. These and other issues became the focus of discussions of the Telecommunications Access Advisory Committee.

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"Legislative History"

"Prior to the 1980s, little had been done by state or federal legislatures to address the needs of individuals with disabilities to utilize telecommunications equipment. Starting in the early 1980s, some states developed programs for the provision of telecommunications relay services and the distribution of specialized customer premises equipment, such as text telephones (TTYs), telebraille machines, and artificial larynxes. Relay services enable persons who are speech or hearing disabled and who use TTYs to communicate by telephone with persons who use conventional voice telephones via a third party called a communications assistant. For the most part, these state relay and distribution programs could not meet all of the demands for telecommunications services or equipment by individuals with disabilities.

"The first important step in the development of a national telecommunications policy for persons with disabilities was the Telecommunications for the Disabled Act of 1982. This law expressly allowed states to require carriers to continue providing subsidies for specialized equipment needed by persons with impaired hearing, speech, vision, or mobility. The 1982 Act also set forth requirements for certain telephones to be compatible with hearing aids. This new law made clear that compatibility between telephones and hearing aids was necessary to accommodate the needs of some persons with hearing loss. In this law, for the first time Congress recognized the FCC's obligation to ensure that individuals with disabilities "have access to the universal telephone network." H. Rep. No. 888 (97th Congress, 2d Session. 1982) 4. The House Report explained:

"Persons with normal hearing may be unable fully to appreciate the pervasiveness of the telephone both in commercial transactions and personal contacts. The inability to use this instrument, except through an interpreter, is not only a practical disability but a constant source of dependency and personal frustration. Conversely, the ability independently to use the telephone may enable persons with other severe handicaps ... to lead self-sufficient lives in regular contact with society. The Committee believes that making the benefits of the technological revolution in telecommunications available to all Americans, including those with disabilities, should be a priority of our national telecommunications policy." (Id. at 4-5).

"In 1986, Congress continued to recognize the importance of providing access to information technology when, in Section 508 of the 1986 Amendments to the Rehabilitation Act, Congress directed federal government agencies to limit their purchases to information technology that is accessible or could support accessibility. In 1988, Congress took an additional step in recognition of the crucial role that access to technology plays in the lives of individuals with disabilities, with the Technology Related Assistance for Individuals with Disabilities Act. Title I of that Act provides federal funding for grants to states to increase access to assistive technology and accessible information technology.

"In 1988, Congress also passed the Hearing Aid Compatibility Act (HAC Act). The HAC Act required that all landline telephones (with the exception of secure telephones) made in or imported into the United States after a certain date (August 1989, with the exception of cordless telephones, which were given an extension until August 1991) must be hearing aid compatible. In 1988, Congress also passed the Telecommunications Access Enhancement Act. This legislation established an expanded federal relay services for calls to, from, and within the federal government, and was designed to improve telecommunications access for persons who use TTYs.

In July of 1990, the Americans with Disabilities Act (ADA) was signed into law. The ADA was the first comprehensive civil rights law to prohibit discrimination against persons with disabilities in employment, state and local government programs, places of public accommodation, transportation, and telecommunications. Title IV of the ADA mandated the establishment of a nationwide telecommunications relay service (TRS) by July 26, 1993. The ADA's requirement for TRS has begun to open the world of telecommunications to individuals with hearing and speech disabilities. Titles I, II, and III have also impacted somewhat on telecommunications access by individuals with disabilities. Although these sections do not impose any requirements for the development of accessible telecommunications products and services, they do require employers, state and local governments, and places of public accommodation, respectively, to provide auxiliary aids and services, which may include accessible telecommunications products and services, to achieve effective communication by individuals with disabilities. Finally, the ADA Accessibility Guidelines (ADAAG), promulgated by the Access Board, require certain telephones covered by the ADA to be physically accessible, hearing aid compatible, and have volume control. These guidelines also require TTYs to be provided at certain public pay phone locations. Notwithstanding these various mandates for telecommunications access under the ADA, nothing in the ADA requires the manufacture of telecommunications products that are accessible. Among other things, section 255 of the Communications Act (as amended) is intended to fill this gap.

In October of 1990, Congress went on to enact the Television Decoder Circuitry Act. This law now requires television sets with screens 13 inches or larger, manufactured or imported into the United States, to be equipped with a computer chip which decodes closed captioning on television programs. Decoder equipped televisions enable persons who are deaf or hard of hearing to receive caption output with regular television programming where captioning is otherwise incorporated into the programming. A new Section 713 of the Communications Act, added by the 1996 Act, further expands such television access by applying new requirements for captioning on new and previously published video programming.

"The Telecommunications Act of 1996 follows this long history of legislative efforts to improve telecommunications access for individuals with disabilities. In addition to mandating access to telecommunications equipment and customer premises equipment, section 255 of this Act mandates access to telecommunications services. The FCC is charged with enforcing section 255, and is expected to initiate further proceedings."

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Other Legal Protections for Access

The ADA (Americans with Disabilities Act of 1990, PL 101-336) provides civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion, It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications. Two sections are specific to telecommunications: Section 401, Telecommunications relay services for hearing-impaired and speech-impaired individuals; and Section 402 Closed-captioning of public service announcements.

The Telecommunications Act of 1996 has several references to disability access. The most important, Section 255, requires that " manufacturers of telecommunications equipment or customer premises equipment shall ensure that the equipment is designed, developed, and fabricated to be accessible to and usable by individuals with disabilities, if readily achievable.", and that, "A provider of telecommunications service shall ensure that the service is accessible to and usable by individuals with disabilities, if readily achievable." In addition, Sec 251 notes that " Each telecommunications carrier has the duty .... not to install network features, functions, or capabilities that do not comply with the guidelines and standards established pursuant to section 255 or 256."

Workforce Reinvestment Act of 1998, Chapter IV, Section 508 clarifies the responsibilities of federal agencies for accessibility in Electronic and Information Technology. This includes both accessibility for federal employees, and individuals with disabilities who are seeking information or services from a federal agency. Though section 508 has existed in various forms since the 1986 Rehabilitation Act Amendments, the 1998 law provides for standards development and enforcement protocols.

(The ADA definition of disability; Sec 255 of the 1996 Telecom Act; and Sec 508 of the 1998 Workforce Reinvestment Act are included in Appendix A)

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Access and Equity

Access is also social and environmental, an implicit assumption in the civil rights perspective of the independent living/disability rights movement which resulted in the Americans with Disabilities Act of 1990 (ADA -- PL 101-336) The broadened environmental/contextual metaphor of the information highway is a good fit with the broadened environmental/contextual focus of modern disability politics. Historically, telecommunications focused on equity by trying to create economic parity (universal service), while disability addressed equity with transfer payments schemes (social security). Advances in technology raised expectations and possibilities, for both telecommunications services and for inclusion of people with disabilities in mainstream society. Paradigm shifts in disability have broadened the perspective, and placed it in context of social/environmental access, well beyond the medical model perspective it grew up in. Paradigm shifts in telecommunications are a close parallel, redefining the nature, power, and breadth of information utility. The old view -- seeing the cripple as an isolated homebound entity without context -- is as archaic as looking at a plain old black rotary dial telephone and trying to imagine an interactive information kiosk or internet access via mobile telephony.

Where does disability access, in particular rural disability access, fit into the converging and rapidly transforming information highway? The regulatory structures that have historically provided rural areas with equitable access are being redefined. It seems almost everything is up for grabs. There are powerful struggles underway regarding access to universal service funds and infrastructure development subsidies. The 1996 Telecommunications Act authorizes more discounts and subsidies, than there are funds available in existing formulas. For example, the new e-rate discounts to schools, libraries, and rural non-profit health care providers will come from the universal service pool. The discounts are under attack, and have already seen reductions in the annual caps. Subsidized text telephones (TTYs, TDDs, TTs), telephone relay services (TRS) and communication assistants (CA) have become an integral part of telephone access for people with hearing and speech disabilities; will subsidized terminals and peripherals become part of internet access as telecommunications expectation expand beyond simple telephony? Will the additional software and hardware that may be needed to provide telecom access for a person with a disability be subsidized when web access becomes a basic communication access right? What will be included in the new definition of POTS (plain old telephone service)? It depends on who is making the decisions. One direction points to increased voice of special interests -- if that is the case, the disability special interest groups had best be prepared to actively join the debate in order to secure a fair share of affordable information highway access. To do this, rural advocates will need accurate, current information about existing policy and practice options, as well as capacity to share effective rural strategies that include disability access issues, with people with disabilities as recognized members of the community.

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Developing Rural Disability Advocates: Getting on the agenda, building an informed constituency

It is important to define a role and voice for people with disabilities who live in rural areas, to enable them to participate and contribute to both rural telecommunications policy and implementation. Without a basis for rational inclusion, both as community members advocating for the best interests of their local rural communities and of their special interests in disability access, people with disabilities are at risk of being further excluded from the benefits of technology innovation and information access. Many of these issues are not just rural issues. However, they will have a disproportionate effect on the rural population, and particularly on people with disabilities living in rural America. And rural people may need training to assist them to be good advocates for their place on the information superhighway, and not as what one urban disability advocate fears, as "information road kill".

Telecommunications is a subset of the technologies, services, and systems that must be in place to provide adequate and equitable access to the metaphoric "information highway". Telecommunications is the area most sensitive to public policy planning, as it is still regulated as a public utility, whereas other information technologies (e.g. computers, television) are mostly unregulated outside their telecommunication aspects.

At the core of U.S. Telecommunications policy is the goal of "universal service" -- the idea that all Americans should have access to affordable telephone service. (McConnaughey, Nila, & Sloan, 1995). In the wake of the 1996 Telecommunications Act, and the rapid advancements in telecommunications infrastructure, products, and services, major transformations are underway in the nature of universal service and reinterpretation of long standing national policy of shared responsibility based on cross-subsidization. Rural interests focus on questions of which services will be included in universal service, who will pay for these services, which rural places and institutions will receive support, and how much support they will receive?

There are contradictory and even conflicting assumptions in existing and emerging rural telecommunications policy. For example, the enormous potential for rural telecommunications applications in health, education, and business to overcome the barriers of distance, are repeatedly used as a substantiation for support of information infrastructure development as a whole. At the same time there are repeated acknowledgments, implicit and explicit, that it will always cost more to deliver telecommunications in rural areas, and hence there need to be subsidies for specific deserving entities -- which creates the potential for undesirable competition among special interests. An example of one basic disconnect between policy and rural practice is in the area of proposed telecommunications discounts for rural health care providers, for which only non-profit organizations are eligible. Yet many rural communities are served by a single physician, or small group practice, which though marginally profitable, do not qualify as not for-profit entities. This could produce additional barriers to physician retention in small towns, already a major problem in rural health care. From a Washington perspective, the policy may make sense, from a small town doctor's patient's view, it is questionable. From a disability perspective, it creates disincentives for the physician to seek current rehabilitation or disability related patient management information online, interactively, via the web, or with distant colleagues. Practical and reality based policy solutions may have to be developed and implemented more locally at the state or county level, to reflect actual local rural conditions. However infrastructure policies may require a higher degree of centralized coordination, monitoring, and may even need to look outside the telecommunications sectors to develop synergy and increased efficiency.

On a more critical level, there are paradigm shifts occurring in the values and principles underlying information/communication access. The basis for cross-subsidization in public utilities is being subtlely transformed by a more competitive framework. This is obvious in the privatization of the electric power industry, and in the new competitiveness and open entry encouraged in the 1996 Telecommunications Act. The power shifts will be more than metaphorical. One example is the internet, which is a largely unregulated network supported by a regulated infrastructure. How long this arrangement will continue is open to speculation as unregulated internet services (e.g. internet telephony) increasingly infringe on the profits of regulated infrastructure providers, severely challenging the limits of the common carrier paradigm". (Firestone, 1997)

People with disabilities need to understand what technologies and applications are and could be available. The interest and policy advances in Telecommunications and Disability (WID Blue Ribbon Panel on Telecommunications, Hearing Aid Compatibility (HAC), Section 255, etc.) over the past few years have been dramatic. Section 255 of the 1996 Telecommunications Act , and the NIDRR Telecommunications Rehabilitation Research Engineering Center have a primary orientation toward accessible and usable telecommunications products. However, it is not enough to have accessible products and telecommunications services available. It is really a larger question of how access -- economic, physical, social, and environmental ­ is defined and who has a voice in defining it. As June  Kailes, a member of the Access Board says: "How can we do it right the first time? We have learned how to fight, but we haven't done a great job on getting it right from the start, so it doesn't have be retrofitted later". (personal communication, July, 1997)

Enders believes that there are infrastructure access issues that were not fully addressed by the Telecommunications Access Advisory Committee (TAAC), of which she was a member, representing RESNA. These infrastructure access barriers could potentially have a disproportionately heavy and negative impact on rural telecommunications access. There is a need for research which will provide an opportunity to include interviews with key informants who are knowledgeable about the "guts" of these systems, and to probe deeper for rural disability access issues which need to be addressed.

Much has been written in the past few years about the National Information Infrastructure (NII) and the Rural Information Infrastructure (RII). There has been increasing interest in disability and telecommunications, and an important new provision section 255 of the 1996 Telecommunications Act. The universal design approach, advocated by the World Institute on Disability's Blue Ribbon Panel on National Telecommunications Policy, and addressed in Section 255 of the 1996 Telecommunications Act, is a powerful first step. But it is still only a technology fix.

There are significant and overlooked issues in rural telecommunications that can have potentially adverse impact on the lives of people with disabilities. Some areas in need of immediate investigation include:

[1] identification, documentation, and/or development of effective and proactive solution strategies that can be used to avoid the inadvertent exclusion of rural people with disabilities from full participation and use of the information highway and its applications

[2] identification of mechanisms for strategically addressing the challenges in rural telecommunications which will significantly enhance the participation of rural people with disabilities in further development of information highway applications (e.g., education and lifelong learning, telemedicine and tele-health, employment and economic development, recreation and travel, entertainment, etc.)

[3] identification of potential advocates and champions for inclusive rural telecommunications;

[4] development of educational strategies for identified rural advocates on how and why they can proactively include disability issues in their existing and emerging agendas for rural information highway access and application;

[5] defining common issues for rural, urban, and suburban populations of people with disabilities.

Acknowledgments:

This work was supported by a grant from the U.S. Department of Education (H133B70017-98). The opinions in this paper reflect only those of the authors and do not represent the opinions or positions of the funding agency. Paper was initially presented in draft form at a Rural Telecommunications Workshop in Washington DC, September 14-15, 1998. The workshop was sponsored by USDA Economic Research Service, TVA Rural Studies, and the Westen Rural Development Center, which is preparing a proceedings of the meeting.

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Appendix A: Legislation Related to Disability & Telecommunications

Americans with Disabilities Act of 1990 (PL 101-336)
Sec.3. Definitions (42 U.S.C. 12102(2)
    (2) Disability. The term disability means, with respect to an individual
        (A) a physical or mental impairment that substantially limits one or more of
         the major life activities of such individual;
        (B) a record of such an impairment; or
        (C) being regarded as having such an impairment.

Rehabilitation Act Amendments of 1992 (PL 102-569)
   Sec.2. Findings; Purpose; Policy
      (a) Findings
            Congress finds that -
          (1) millions of Americans have one or more physical or mental disabilities
         and the number of Americans with such disabilities is increasing;

 (2) individuals with disabilities constitute one of the most disadvantaged groups in society;

  (3) disability is a natural part of human experience and in no way diminishes the right of individuals to -

                        (A) live independently;
                        (B) enjoy self-determination;
                        (C) make choices;
                        (D) contribute to society;
                        (E) pursue meaningful careers; and
                        (F) enjoy full inclusion and integration in the economic, political,
                          social, cultural, and educational mainstream of American society;

(4) increased employment of individuals with disabilities can be achieved through the provision of individualized training, independent living services, educational and support services, and meaningful opportunities for employment in integrated work settings through the provision of reasonable accommodations;

(5) individuals with disabilities continually encounter various forms of discrimination in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and public services; and

(6) the goals of the Nation properly include the goal of providing individuals with disabilities with the tools necessary to

    (A) make informed choices and decisions; and
    (B) achieve equality of opportunity, full inclusion and integration in society, employment, independent living, and economic and social self-sufficiency, for such individuals."

Telecommunication Act of 1996 (PL 104-104)
SEC. 255. [47 U.S.C. 255] ACCESS BY PERSONS WITH DISABILITIES.

(a) Definitions.--As used in this section--

(1) Disability.--The term ''disability'' has the meaning given to it by section 3(2)(A) of the Americans with Disabilities Act of 1990 (42 U.S.C. 12102(2)(A)).
(2) Readily achievable.--The term ''readily achievable'' has the meaning given to it by section 301(9) of that Act (42 U.S.C. 12181(9)).

(b) Manufacturing.--A manufacturer of telecommunications equipment or customer premises equipment shall ensure that the equipment is designed, developed, and fabricated to be accessible to and usable by individuals with disabilities, if readily achievable.

(c) Telecommunications Services.--A provider of telecommunications service shall ensure that the service is accessible to and usable by individuals with disabilities, if readily achievable.

(d) Compatibility.--Whenever the requirements of subsections (b) and (c) are not readily achievable, such a manufacturer or provider shall ensure that the equipment or service is compatible with existing peripheral devices or specialized customer premises equipment commonly used by individuals with disabilities to achieve access, if readily achievable.

(e) Guidelines.--Within 18 months after the date of enactment of the Telecommunications Act of 1996, the Architectural and Transportation Barriers Compliance Board shall develop guidelines for accessibility of telecommunications equipment and customer premises equipment in conjunction with the Commission. The Board shall review and update the guidelines periodically.

(f) No Additional Private Rights Authorized.--Nothing in this section shall be construed to authorize any private right of action to enforce any requirement of this section or any regulation thereunder. The Commission shall have exclusive jurisdiction with respect to any complaint under this section.

Workforce Investment Act of 1998 (PL 105-220; HR 1385)
Title IV Rehabilitation Act Amendments of 1998

b) ELECTRONIC AND INFORMATION TECHNOLOGY REGULATIONS- Section 508 (29 U.S.C. 794d) is amended to read as follows:`

SEC. 508. ELECTRONIC AND INFORMATION TECHNOLOGY.

`(a) REQUIREMENTS FOR FEDERAL DEPARTMENTS AND AGENCIES-

`    (1) ACCESSIBILITY-

(A) DEVELOPMENT, PROCUREMENT, MAINTENANCE, OR USE OF ELECTRONIC AND INFORMATION TECHNOLOGY- When developing, procuring, maintaining, or using electronic and information technology, each Federal department or agency, including the United States Postal Service, shall ensure, unless an undue burden would be imposed on the department or agency, that the electronic and information technology allows, regardless of the type of medium of the technology--

`(i) individuals with disabilities who are Federal employees to have access to and use of information and data that is comparable to the access to and use of the information and data by Federal employees who are not individuals with disabilities; and

`(ii) individuals with disabilities who are members of the public seeking information or services from a Federal department or agency to have access to and use of information and data that is comparable to the access to and use of the information and data by such members of the public who are not individuals with disabilities.

(B) ALTERNATIVE MEANS EFFORTS- When development, procurement, maintenance, or use of electronic and information technology that meets the standards published by the Access Board under paragraph (2) would impose an undue burden, the Federal department or agency shall provide individuals with disabilities covered by paragraph (1) with the information and data involved by an alternative means of access that allows the individual to use the information and data.

`    (2) ELECTRONIC AND INFORMATION TECHNOLOGY STANDARDS-

(A) IN GENERAL- Not later than 18 months after the date of enactment of the Rehabilitation Act Amendments of 1998, the Architectural and Transportation Barriers Compliance Board (referred to in this section as the `Access Board'), after consultation with the Secretary of Education, the Administrator of General Services, the Secretary of Commerce, the Chairman of the Federal Communications Commission, the Secretary of Defense, and the head of any other Federal department or agency that the Access Board determines to be appropriate, including consultation on relevant research findings, and after consultation with the electronic and information technology industry and appropriate public or nonprofit agencies or organizations, including organizations representing individuals with disabilities, shall issue and publish standards setting forth--

`(i) for purposes of this section, a definition of electronic and information technology that is consistent with the definition of information technology specified in section 5002(3) of the Clinger-Cohen Act of 1996 (40 U.S.C. 1401(3)); and

`(ii) the technical and functional performance criteria necessary to implement the requirements set forth in paragraph (1).

(B) REVIEW AND AMENDMENT- The Access Board shall periodically review and, as appropriate, amend the standards required under subparagraph (A) to reflect technological advances or changes in electronic and information technology.

(3) INCORPORATION OF STANDARDS-

Not later than 6 months after the Access Board publishes the standards required under paragraph (2), the Federal Acquisition Regulatory Council shall revise the Federal Acquisition Regulation and each Federal department or agency shall revise the Federal procurement policies and directives under the control of the department or agency to incorporate those standards. Not later than 6 months after the Access Board revises any standards required under paragraph (2), the Council shall revise the Federal Acquisition Regulation and each appropriate Federal department or agency shall revise the procurement policies and directives, as necessary, to incorporate the revisions.

(4) ACQUISITION PLANNING-

In the event that a Federal department or agency determines that compliance with the standards issued by the Access Board under paragraph (2) relating to procurement imposes an undue burden, the documentation by the department or agency supporting the procurement shall explain why compliance creates an undue burden.

(5) EXEMPTION FOR NATIONAL SECURITY SYSTEMS-

This section shall not apply to national security systems, as that term is defined in section 5142 of the Clinger-Cohen Act of 1996 (40 U.S.C. 1452).

(6) CONSTRUCTION-

(A) EQUIPMENT- In a case in which the Federal Government provides access to the public to information or data through electronic and information technology, nothing in this section shall be construed to require a Federal department or agency--

`(i) to make equipment owned by the Federal Government available for access and use by individuals with disabilities covered by paragraph (1) at a location other than that where the electronic and information technology is provided to the public; or

(ii) to purchase equipment for access and use by individuals with disabilities covered by paragraph (1) at a location other than that where the electronic and information technology is provided to the public.

(B) SOFTWARE AND PERIPHERAL DEVICES- Except as required to comply with standards issued by the Access Board under paragraph (2), nothing in paragraph (1) requires the installation of specific accessibility-related software or the attachment of a specific accessibility-related peripheral device at a workstation of a Federal employee who is not an individual with a disability.

(b) TECHNICAL ASSISTANCE-

The Administrator of General Services and the Access Board shall provide technical assistance to individuals and Federal departments and agencies concerning the requirements of this section.

(c) AGENCY EVALUATIONS-

Not later than 6 months after the date of enactment of the Rehabilitation Act Amendments of 1998, the head of each Federal department or agency shall evaluate the extent to which the electronic and information technology of the department or agency is accessible to and usable by individuals with disabilities described in subsection (a)(1), compared to the access to and use of the technology by individuals described in such subsection who are not individuals with disabilities, and submit a report containing the evaluation to the Attorney General.

(d) REPORTS-

(1) INTERIM REPORT- Not later than 18 months after the date of enactment of the Rehabilitation Act Amendments of 1998, the Attorney General shall prepare and submit to the President a report containing information on and recommendations regarding the extent to which the electronic and information technology of the Federal Government is accessible to and usable by individuals with disabilities described in subsection (a)(1).

(2) BIENNIAL REPORTS- Not later than 3 years after the date of enactment of the Rehabilitation Act Amendments of 1998, and every 2 years thereafter, the Attorney General shall prepare and submit to the President and Congress a report containing information on and recommendations regarding the state of Federal department and agency compliance with the requirements of this section, including actions regarding individual complaints under subsection (f).

(e) COOPERATION-

Each head of a Federal department or agency (including the Access Board, the Equal Employment Opportunity Commission, and the General Services Administration) shall provide to the Attorney General such information as the Attorney General determines is necessary to conduct the evaluations under subsection (c) and prepare the reports under subsection (d).

(f) ENFORCEMENT-

(1) GENERAL-

(A) COMPLAINTS- Effective 2 years after the date of enactment of the Rehabilitation Act Amendments of 1998, any individual with a disability may file a complaint alleging that a Federal department or agency fails to comply with subsection (a)(1) in providing electronic and information technology.

(B) APPLICATION- This subsection shall apply only to electronic and information technology that is procured by a Federal department or agency not less than 2 years after the date of enactment of the Rehabilitation Act Amendments of 1998.

(2) ADMINISTRATIVE COMPLAINTS-

Complaints filed under paragraph (1) shall be filed with the Federal department or agency alleged to be in noncompliance. The Federal department or agency receiving the complaint shall apply the complaint procedures established to implement section 504 for resolving allegations of discrimination in a federally conducted program or activity.

(3) CIVIL ACTIONS-

The remedies, procedures, and rights set forth in sections 505(a)(2) and 505(b) shall be the remedies, procedures, and rights available to any individual with a disability filing a complaint under paragraph (1).

(g) APPLICATION TO OTHER FEDERAL LAWS-

This section shall not be construed to limit any right, remedy, or procedure otherwise available under any provision of Federal law (including sections 501 through 505) that provides greater or equal protection for the rights of individuals with disabilities than this section.'.

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Appendix B: Health Professional Shortage Areas

Appendix C: Reference Citations

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Bitter, J. (1972). Some viable service delivery approaches in rural rehabilitation. Rehabilitation Literature, 33(12), 354-357.

Coward, R., & Cutler, S. (1989). Informal and formal health care systems for the rural elderly. Health Services Research, 23(6), 785-806.

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Davis, C. (1968). In a rural poverty area. Rehabilitation Record, 9, 36-37.

DeFriese, G., & Ricketts, T. (1989). Primary health care in rural areas: An agenda for research. Health Services Research, 23(6), 931-974.

Firestone,Charles, editor. The Internet as Paradigm. Eighth Annual Review of the Institute for Information Studies. Aspen Institute, Queenstown, Maryland 1997 http://www.aspeninst.org

Goodyear, D., Bitter, J., & Micek, L. (1973). Rehabilitation service for rural, rural-urban, and urban clients. Rehabilitation Counseling Bulletin, 16, 92-99.

Hansen, C. (1972). Rural rehabilitation, the county agent. The Journal of Rehabilitation, 38(2), 20-22.

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McConnaughey, Jim, Lader, Wendy, project coordinators. Falling Through the Net: New Data on the Digital Divide. U.S. Dept. Of Commerce, 1998 (full text online at: http://www.ntia.doc.gov/ntiahome/net2/ )

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Appendix D. Acronyms

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ADA     American with Disabilities Act (P.L.101-336)
ADAAG     American with Disabilities Act Accessibility Guidelines
ATBCB     Architectural and Transportation Barriers Compliance Board (Access Board)
CA     Communication Assistant
CIL     Center for Independent Living
CPS     Current Population Survey
ED     Economic Development
EIA     Electronic Industries Association
GUI     Graphical User Interface
HAC     Hearing Aid Compatibility
NIDRR     National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitation Services, U.S. Department of Education
NII     National Information Infrastructure
PL     Public Law
POTS     Plain Old telephone Service
RESNA     Rehabilitation Engineering and Assistive Technology Society of North America
RII     Rural Information Infrastructure
RRTC     Rehabilitation Research and Training Center
SIPP     Survey of Income and Program Participation
TAAC     Telecommunications Access Advisory Committee, Architectural and Transportation Barriers Compliance Board
TDD     Telecommunication Device for the Deaf
TRS     Telephone Relay Service
TT     Text Telephone
TTY     TeleTYpewriter

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