assistive technology policy: a road to independence for individuals with disabilities

Journal of Social Issues, Vol. 49. No. 2 , 1993. pp . 115-136

Assistive Technology Policy: A Road to Independence for Individuals with Disabilities

Katherine D. Seelman Administration on Developmental Disabilities

This article identifies and analyzes equity issues in assistive technology policy for adults with disabilities in the United States and makes recommendations for further research and advocacy. The following equity issues are considered: (a) who has access to assistive technology, (b) which technology is available, (c ) who decides on the technology, and (d) who controls or determines the allocation of assistive technology. The discussion considers the role of stereotyping and discrimination in policy-making and how these afect equity. There is a need to rethink the concepts of normal and abnormal, and to reformulate policy more on the basis of the values of empowerment, independence, and community integration.

Assistive technology enables individuals with disabilities to do what most people take for granted. With assistive technology a person may perform daily tasks of independent living, of work and of citizenship. Without assistive technology, many capable people are held captive in institutional settings and segregated from work and community life. The purpose of this article is to identify and analyze the equity issues in assistive technology policy, their relationship to old values, such as segregation, and new values, such as independence, and to make recommendations about policy initiatives.

While individuals with disabilities number 43 million and are the country’s largest minority, they have only recently become effective advocates in their own interest. Their advocacy has been driven by so-called new values of empowerment, independent living, and community integration, and they have successfully advocated for civil rights and for independent living (Berkowitz, 1987;

This article does not necessarily represent the views of the Administration on Developmental

Correspondence regarding this article should be addressed to Katherine D. Seelman, Box 1056, Disabilities.

Washington Grove, MD 20880.

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0022-453719310600-01 IS07 00 0 1993 The Society for the Psychological Study of Social Issues

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Scotch, 1984, 1989). In this paper, the terms “old values” and “new values” are used to designate different stages in the development of disability policy. Other interest groups, such as medical, rehabilitation, and social service professionals, have also successfully advocated for a variety of disability-related resources at various stages in the history of disability policy. As a result, the largest disability programs, Social Security Disability Insurance (SSDI) and Supplemental Securi- ty Income (SSI), are based on old values that foster dependence on income support (DeJong, 1991). The largest U.S. public health programs, Medicaid and Medicare, routinely allocate resources for medical treatment but only haphaz- ardly allocate resources for long-term services, such as assistive technology, which are needed to live in the community.

The focus of disability policy advocacy has shifted from income support and rehabilitation to civil rights. Because of advances in medical technology and acute care, more individuals are surviving the initial stages of trauma and the early years of chronic conditions. Many individuals with severe disabilities have the potential to return to the community if long-term services are available to bridge the abilities of the individual and the demands of the environment. These long-term services include home care, personal assistance services (attendants, interpreters for the deaf, readers for the blind) and assistive technology, accessible transportation, and accessible housing. Some of these services are now required as a result of enactment of civil rights law. Section 504 of the Reha- bilitation Act of 1973 (29 U.S.C. 791-94) and the Americans with Disabilities Act of 1990 (ADA, P.L. 101-336, 42 U.S.C. 12101), provide powerful protec- tion against discrimination. For example, employers are required to provide reasonable accommodations, such as assistive technology, for their disabled employees (Feldblum, 1991; Mayerson, 1991; Weirich, 1991). Civil rights laws are driven by new values of empowerment, independence, and community integration.

Assistive Technology: What Is It?

According to the U.S. Congress Office of Technology Assessment (U.S. OTA, 1982), technology, in its broadest sense, is the application of knowledge to practical purposes. In the classic study, Technology and Handicapped People (1982), U.S. OTA used this broad definition, but limited the focus of the study to technologies designed for and used by individuals with the purpose of compen- sating for one or more functional limitations. This approach lends itself to the classification of technology by basic goals such as communication and mobility and broad goals such as independent living, education, employment, and health. Many different schemes exist to classify assistive technology including goals, function, and technological complexity. The following is a representative taxon-

Assistive Technology Policy 117

omy: (a) wheelchairddriving adaptations/mobility aids, (b) positioning/seating, (c) computer applications, (d) augmentative computer devices, (e) environmental control systems, (f) prosthetics/orthotics, (g) aids for hearing/vision, and (h) home/worksite modifications. This taxonomy reflects an enthusiasm for high or medium tech. But assistive technology also includes low-tech items such as no- stoop dustpans and brooms, special laundry knobs, walker bags, and Velcro. Assistive technology also encompasses technology services for finance, training, information, evaluation, maintenance, and upgrading. The Technology-Related Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407, 29 U.S.C. 2201 et seq.) legitimized the use of the term assistive technology rather than, for example, assistive devices. However, disability laws are inconsistent in naming and defining what is referred to here as assistive technology.

This article adopts the U. S . OTA approach for technologies used by individuals but broadens the focus to consider some equity issues involved in technology used by populations. For example, should equipment and environments accom- modate the broadest range of abilities or a limited range of abilities? Public policy then confronts the question of the meaning and value of normalcy in allocating technological resources. For example, an automatic bank teller machine-one of a number of types of public information centers-may be designed with voice output and other accommodations for people with sensory, cognition, dexterity, and mobility limitations, or for a more limited range of abilities.

Equity Issues

The assistive technology equity issues examined in this paper include the following: (a) who has access to technology, (b) which technology is available, (c) who decides on the technology, and (d) who controls or determines the allocation of assistive technology.

Assistive technology equity issues have their most concrete expression in disability programs such as Medicaid. Some disability programs, such as SSI with a budget of approximately $12.5 billion and SSDI with a budget of $25 billion and the health programs for which they serve as eligibility gateways, Medicaid ($41 billion budget) and Medicare ($98 billion budget), are administered by powerful bureaucracies (Consortium for Citizens with Disabilities, 1991). Other programs, such as the Independent Living program ($45 million budget) under the Rehabilitation Act of 1973, are modestly funded and staffed. Assistive technology and disability policy are largely determined by elected officials, government agencies, interest groups, community groups, and the disability rights movement, all of which are active on Capitol Hill and across the country. While equity issues do exist in relation to the private sector, the assistive technology marketplace is weak and government plays a central role in allocating

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these resources. Disability and assistive technology policy is also influenced by public attitudes that often express the historic prejudice experienced by individuals with disabilities. Therefore, consideration is given to the historical, social, and policy context as well as to the actual programs that allocate assistive technology.

Population Characteristics: Who Needs Access To It?

Virtually every discussion of disability-whether for social analysis or advocacy-begins with statistics on the size and characteristics of the population. However, disability is not always precise and quantifiable. It can differ from day to day and also from situation to situation. Harlan Hahn (1985), a political scientist, suggests that disability is whatever policy says it is. Indeed, the definition of disability differs depending on the authorizing legislation for a program. Definitional inconsistencies affect assistive technology policy.

On the one hand, in the Social Security Act of 1935 as amended-the largest single source of assistive technology funding-disability is narrowly defined as an inability to engage in substantial gainful activity (U.S. Department of Health and Human Services, 1989). On the other, in the Americans with Disabilities Act of 1990-which does not have program funding-disability is defined broadly to include the following: (a) physical or mental impairments that substantially limit the person in a major life activity and (b) someone with a record of such an impairment or who is regarded as having an impairment. Large bureaucracies, such as the Public Health Service and the Social Security Admin- istration, with a large client base including a proportionately small number of people with disabilities, have an interest in collecting data about impairments and work disabilities for this population. They do not have mandates that direct them to collect data on the need for and utilization of community-based services, assessments of individual functioning and architectural and communication barriers (Seelman, 1990). This kind of data is important to program planning for accessing assistive technology and for determining which technology is needed.

Drawing upon the World Health Organization’s classic conceptualization, statistician Mitchell P. LaPlante ( 1989) defines disability as a “limitation, caused by one or more chronic physical or mental health conditions, in performing activities that people of a particular age are generally expected to perform” (p. 1). Rather than a list of impairments or a list of criteria for inability to work, LaPlante argues that disability should be defined using measures of functioning in basic life activities (walking, going outside, getting out of bed, toileting, eating, etc.) and in instrumental life activities (housework, shopping, using the telephone, etc.) so that individuals are assessed in terms of needs for services. Where these assessments have been done, they have focused on the elderly who


are more at risk, although the risk for the nonelderly applies to a much larger population (Gris, 1988; LaPlante, 1991b).

Estimates of the number of individuals with disabiYities vary from 34 million (LaPlante, 1989) to 43 million (Americans with Disabilities Act of 1990) to much larger estimates (Pfeiffer, 1987). LaPlante estimates that approximately 32.5 million noninstitutionalized persons have an activity limitation caused by one or more chronic health conditions. Orthopedic impairments, arthritis, and heart disease account for 40% of all conditions identified as the main cause of activity limitation. The remaining 60% is distributed among 44 other conditions of moderate to low prevalence (LaPlante, 1989). Low-prevalence conditions, such as absence of armdhands, multiple sclerosis, and lung or bronchial cancer have a high risk of disability, whereas high-prevalence conditions, such as hyper- tension and heart disease, have a low risk of disability. However, impairments (functional or structural musculoskeletal and neuromuscular abnormalities and other abnormalities of visual and auditory senses, speech, and intelligence) have a higher risk of disability than do chronic conditions. Persons with disabilities also tend to be significantly below the norm in education, income, and employment (International Center for the Disabled [ICD], 1986). LaPlante (1989) also points out that risk increases with age for most conditions, that females report 40% more chronic conditions than males, and that social class is an important factor in the prevalence of chronic conditions and impairment.

LaPlante (1991b) recently analyzed disability in basic life activities across the life span of noninstitutionalized persons. He found that the nature of assistance (need for a person and/or assistive technology in basic or instrumental activities) varied at the extremes of the age distribution, i.e., the oldest old and the young need more assistance. Otherwise, working-age adults and young elderly adults have similar needs for assistance. LaPlante (1991b) also found that people use equipment more frequently in going outside, walking, and toileting than in other physical activities. Men are more likely to use equipment than are women. Nonelderly adults are more likely to use equipment than are elders or children. LaPlante (199 lb) concluded that the population with long-term service needs is more evenly distributed across the life span than is generally acknowl- edged.

LaPlante (1991a, p. 73) argued that in order to implement civil rights law, such as the Americans with Disabilities Act, social planning must be based on data sources that include measures of impairment, functional limitations, activity limitations, and measures of social and economic activity, including what the person can do and desires to do. National surveys, like the Survey of Income and Program Participation and the National Health Interview Survey, need to be improved by measuring limitations of function and the broader spectrum of life activities (LaPlante, 1991a).

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This short summary of the disability population provides some insights into equity issues. The Social Security Administration and the Public Health Service, in their role as data processors, are important decision makers in assistive technology planning and in the determination of resource allocation. These agencies focus on incapacity and thus disability is limited to medical conditions or work limitations. Such an approach is supportive of technology directly related to the treatment of a medical condition. Furthermore, data collection seems driven by stereotypes of age and ability. While assistive technology needs span the life cycle, assessments, when conducted, appear related to older people. As a result, less information may be available about working age adults and children. Fur- ther, the institutionalized population is not well addressed in surveys related to personal assistance needs. The assistive technology needs of women, of those whose impairments are caused by conditions such as cancer, rather than traditional disabilities such as deafness, and minorities with disabilities deserve further analysis in order to identify their special assistive technology needs and services. While surveys indicate that individuals with disabilities have low incomes, the implications of low income, and other social deprivations for assistive technology services is not known. Finally, data collection focuses on individuals not on populations and environmental accessibility. The implication is that the problem is located with the individual not with the society.

History

According to historian, Paul K. Longmore (1988, p. I), social scientists have been reconceptualizing disability as primarily a socially constructed condition, a social role and identity, rather than a series of medical phenomena. Longmore observes that people with a variety of disabilities have shared a common social and historical experience, and have confronted a common set of stigmatizing values. Instances of ridicule, torture, imprisonment, and execution throughout history are not uncommon (Bowe, 1978; Koestler, 1976). In the United States, individuals with disabilities were often excluded from their fami- lies in the colonial period, and later they experienced stages of unenlightened to enlightened institutionalization “to protect them from society” (President’s Com- mittee on the Employment of the Handicapped, 1976-77). Wolf Wolfensberger (1969) described the 20th-century U.S. policy of institutionalization as follows:

Whether young or old; whether borderline or profoundly retarded; whether physically handicapped or physically sound; whether deaf or blind; whether rural or urban; whether from the local town or from 500 miles away; whether well or ill-behaved, we took them all, by the thousands, 5,000 to 6,000 in some institutions. We had all the answers in one place, using the same facilities, the same personnel, the same attitudes, and largely the same treatment. (p. 143)


As Wolfensberger (1969) points out, a more hopeful policy emerged with the establishment of a soldier’s rehabilitation program in 19 18 and vocational rehabilitation in 1920. However, even vocational rehabilitation has been dominated by service providers who made decisions about what was best for individuals with disabilities. This legacy of stigma, captivity, and professional dominance has continued to have an impact on the allocation of disability resources.

Society

Individuals with disabilities continue to experience discrimination through social attitudes and barriers to accessibility in buildings and in communications. The U.S. Commission on Civil Rights (1983) identified some common strains and consistent prejudice based on “handicap.” They are (a) discomfort (aver- sion), (b) patronization and pity, (c) stereotyping, and (d) stigma (undesirable differences) (pp. 22-26). Paul Longmore (1986), in “Talking Back to the Me- dia,” observed that the fictional television and movie media exploits disability as a melodramatic plot device-the cause or consequence of wrongdoing and an affliction, with most people with disabilities wallowing in self-pity or unable to cope. Nonfictional television and the printed media suggest that the best solution to disability is a medical or technical fix or that people overcome their disability (Longmore, 1986).

The historical and social context for assistive technology is characterized by a dominant society that has created a clear distinction between normal and abnormal. Depending on the stereotype, the abnormal identity may be subhu- man, satanidsinful, impaired/sick, and infantile. Public officials may use these stereotypes to deny allocations of assistive technology resources on the basis of misconceptions about the abilities of people with disabilities. People with disabilities may have incorporated these stereotypes into their identities, and conse- quently have misconceptions about their abilities. Both of these constructions provide justification for relegating decisions about assistive technology to the professional. The technology justified by these stereotypes include life-ending technology, restraining technology, punishing technology, cure technology, medical technology, and simple and safe technology. In reality, individuals with disabilities need technology to pursue routine activities of daily living. Having low incomes and complex health conditions, they are often dependent on public programs for decisions about technology.

Disability policy is a captive of history. Existing legislation is based on assumptions about disability that prevailed at different historical periods. Layers of legislation still exist that are based on different and often conflicting values about disability. The programs supported by these laws constitute a complex service environment having the following components (DeJong, 1991):

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-Civil rights protections such as those provided in Section 504 of the Rehabilitation Act and the recently enacted Americans with Disabilities Act;

-Skill enhancement programs such as education and rehabilitation; and --Income and in-kind assistance programs such as the Social Security

Disability Insurance programs and Medicare programs.

Each of these components fits into a stage in disability policy development. Historically, concern for disability has been intertwined with efforts to es-

tablish policy in much larger health and welfare issue areas as well as with efforts directed to a particular disability group (Erlanger & Roth, 1985). Historian Edward Berkowitz (1987) observes that disability policy has been either ameliorative or corrective. Worker’s Compensation, SSDI, and SSI, which are transfer payments, are ameliorative (Berkowitz, 1987). Vocational Rehabilitation, Inde- pendent Living, and Architectural Barriers, all programs under the Rehabilitation Act of 1973, are corrective and disability is defined more in terms of functional limitations.

Advocacy and the Disability Movement

The disability rights movement emerged in the early 1970s. The leadership came from the ranks of people with disabilities who coalesced around a common experience of oppression. They were seeking empowerment, a characteristic that distinguishes their efforts from other disability advocates who were more apt to seek services or attitudinal change (Bartels, 1985; Denson, 1988; Pfeiffer, 1988). Disability leaders, sometimes paraplegic or quadriplegic such as Ed Roberts, Judy Heumann, and Lex Friedan, were influenced by the social movements of the 1960s. According to Scotch (1984, 1989) and Berkowitz (1987), disability movement participants were influenced and enabled by the following: (a) advances in medical technology, (b) the support of Great Society programs, and (c) the civil rights movements. In the 1970s they formed a network of loosely coupled organizations, which eventually evolved into a cross-disability effort active in the development of legislation as well as grass roots organizing. Like other civil rights organizers, disability activists used direct action strategies, such as sit-ins, and more traditional strategies, such as lobbying and education, to pursue their goals.

The disability movement was supported in its efforts by government agency staff, both disabled and nondisabled, and eventually by bipartisan support in the Congress and by the Reagan and Bush administrations. During the 1980s, four critical reports provided a foundation for the introduction of comprehensive civil rights legislation (ICD, 1986; Mayerson, 1991; National Council on Disability, 1986, 1988). With the exception of the report completed by the Presidential

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Commission on the Human Immuno-Deficiency Virus Epidemic in 1988 , these reports were the work, directly or indirectly, of the National Council on Disabili- ty. In 1986 the National Council on Disability, an independent federal agency composed of presidential appointees and with a sophisticated staff led by people with disabilities, held public hearings throughout the country. The National Council produced two reports that were submitted to the president and to the Congress. The reports included a proposal for antidiscrimination legislation and a draft of the future Americans with Disabilities Act. The National Council also commissioned a Harris Poll (ICD, 1986), which found that people with disabilities were “uniquely underprivileged and disadvantaged”-and one of the disad- vantages was the lack of accessible devices (Mayerson, 1991, p. 4).

The Americans with Disabilities Act of 1990, which was introduced into the Congress in 1988, enjoyed the strong support of members who were disabled such as Representative Coelho and Senator Dole, and Senator Harkins, who has a brother who is deaf (Jones, 1991). Disability movement activities also greatly affected assistive technology legislation. The Rehabilitation Act of 1973 was amended in three important areas: (a) to provide for the first civil rights protec- tion for individuals with disabilities, (b) to provide for independent living services, and (c) to put teeth into architectural access provisions. Legislation passed to mandate mainstreaming for disabled children, to provide a bill of rights for people with mental retardation and to bar discrimination in housing in the private sector (Tucker 199 1). This legislation mainstreamed many disabled people who, in the transition from segregated living, education, and work arrangements to less restrictive environments, would need access to support services such as assistive technology. These disabled people and service providers created an increased demand for assistive technology.

Table 1 shows recent developments in assistive technology policy. Many policy approaches have been used to allocate assistive technology resources to those who need it. Old programs such as rehabilitation have been expanded and new programs such as early intervention have been established. Tax incentives now exist for the consumer and the potential employer to purchase assistive technology. Assistive technology has become closely associated with civil rights. Technologies for wider populations, such as television sets and computers used by federal employees, also must be accessible to the deaf and to all federal workers with disabilities, respectively.

While these policy developments represent formidable achievements, they also suggest formidable challenges. These new policies have not created a pool of money to fund assistive technology. They have not addressed the value inconsistencies of SSDI and SSI programs funded by the Social Security Administra- tion in which inabilities are the basis of entitlements. Approximately 8% of the $189 billion disability expenditures are allocated to education, services, and accessibility, including assistive technology, transportation, housing, and com-

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Table 1. Recent Developments in Assistive Technology Policy

Seelman

Year Action Approach

1986

1986

1986

1988 1988

1990

1990

I990

1990

~

Amendments to Rehabilitation Act: Guidelines for devices and federal purchase of computers

infants Early Intervention: Assistive tech services for

Social Security Amendments

Medicaid Amendments Technology-Related Assistance Act: Statewide

tech assistance Americans with Disabilities Act: Civil rights in

employment, transportation, public accommodations, telecommunications

ADA Tax Credit for Small Business

Decoder Circuitry Act: Standard for television

Policy Memos: Special Education and Reha- manufacturers

bilitation

Expand benefits in major program; change procurement practices

Establish a new program

Tax sheltering income to pur-

Expand existing program New funding and program

Access rules for private sector; access tech by expanding civil rights

Tax incentive to expand access to technology

Requires new design standard

Clarify rights under existing

chase technology

major programs

Noret Adapted from Morris (1991).

munications accessibility (Consortium for Citizens with Disabilities, 199 1). Thus the major conclusion of the 1982 OTA report Technology and Handicapped People, is still quite relevant. The OTA concluded the following:

. . . despite the existence of numerous important problems related to developing technologies, the more serious questions are social ones-of financing, of conflicting and ill- defined goals, of hesitancy over the demands of distributive justice, and of isolated and uncoordinated programs. (p. 4)

Assistive technology, viewed as a social support for a citizen who is disabled but integrated into community life, involves a new set of values that have tenuous institutional commitments. Disability activists have also advocated redi- recting research in support of these new values.

Advocacy and Research

At the same time as activists were leading a political movement, there was also considerable advocacy in the research arena. Leaders of the disability movement have often criticized the research community for quantification of bias. Hahn (1989, who is a disability rights leader, states that the difference between the theoretical model accepted by the disability rights movement and the assumptions that have dominated prior research are "profound" (p. 303). Essentially, there are two paradigms, one that locates the problems in the impairments and


functional status of the individuals, and the other that locates the problems in the attitudes, stereotypes, and prejudices of society. Of course, not all research adopts these paradigms; some research is within the framework of person- environment interactions (cf. Asch & Fine, 1988). However, on his conception of two paradigms, Hahn believes, for example, that environmental barriers are the result of prejudicial attitudes decreeing that human-made environments will be accessible to some but not to others.

The Joint Centre for Survey Methods (1989) presented a scathing indictment of the value assumptions of survey research used in studies of disability. The report included the following points: (a) the use of a research framework that emphasized what matters to the physicians rather than to the individual; and (b) the use of measures that precluded assessments of needs for services, aids, and appliances that can improve life. The Joint Centre for Survey Methods report also included the observation that disability policy historically favored the male, who as the soldier and the traditional worker, was the impetus for early policy development. Batavia and DeJong (1990) recently observed that while medical rehabilitation research has been successful in developing therapies to reduce functional limitations and to enhance independent living possibilities, little emphasis has been placed on the broader social, political, and legal issues that are important to informed public and private disability policy. They go on to note that “as in the case of research on medical services, research on assistive devices has focused on clinical issues’’ (p. 54). In a similar vein, Fox (1990) warns that independence as a goal of health policy cannot be achieved as long as every claim from a provider to a payor must begin by classifying the patient or client according to an impairment or pathology as specified in the International Classi- fication of Disease. Fox believes policymakers will take independence much more seriously when researchers show them how to classify patients and inter- ventions according to disabilities and handicaps. A new classification scheme based on function would, of course, be extremely useful to assistive technology planning. Administrators currently use medical criteria to make decisions about payment for devices.

Disability Programs

Assistive technology devices and services are allocated by the following public and private decision makers: SSDI, SSI, Medicaid, Medicare, private insurance carriers (health insurance, disability insurance, liability insurance, and worker’s compensation), Special Education Agencies, Vocational Rehabilitation Agencies, and the Department of Veteran’s AffairsICHAMPUS. As this list suggests, third-party payment is pervasive in assistive technology funding (Gris, 1988). However, results of a recent National Medical Expenditures Survey (Alt- man, 1992) shows that most assistive devices are paid for out of pocket.

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The following programs routinely make decisions about equity issues related to assistive technology policy and will be included for review and analysis: (a) SSDI, (b) SSI, (c) Medicaid, (d) Medicare, (e) Vocational Rehabilitation, including Independent Living, (f) Statewide technology assistance programs, and (g) Technical assistance under the Americans with Disabilities Act. Medi- caid, special education (including early intervention), and vocational rehabilitation are the principal civilian sources of federal support for assistive technology funding (RESNA, 1991).

SSDI and SSl

SSDI was established in 1956 and was budgeted for fiscal year (FY) 1990 at $25 billion. SSDI provides monthly cash benefits for over 4.3 million people, including workers under age 65 who are no longer able to engage in substantial gainful activity (Consortium for Citizens with Disabilities, 1991). After two years of benefit payments, beneficiaries who are disabled receive Medicare coverage. SSI was established in 1974 and was budgeted at $12.5 billion for FY 1990. SSI provides federally financed and administered benefits to 4.2 million persons with limited incomes who are aged, blind, or disabled. Currently, over 3 million individuals with disabilities receive SSI monthly payments. In almost all states, SSI eligibility carries with it health care services provided through Medi- caid. Both programs have substantially more liberal benefits for individuals who are blind.

For both SSDI and SSI, the cost of certain impairment-related items and services that a person needs in order to work are deducted from earnings in figuring substantial gainful activity . These deductions include medical devices, work-related equipment, and assistants and prostheses. SSDI, in particular, has been criticized for insufficient incentives to move recipients from unemployment to employment, and both programs have been criticized for the complexity of the eligibility process, which makes it difficult to know whether or not work will jeopardize receipt of benefits (Martin, 1991).

Medicaid

Medicaid is the largest and perhaps the most important source of public funding for assistive technology. In 1988 more than 3.3 million disabled persons were covered under Medicaid (Ellwood & Burwell, 1990). The Medicaid program was established in 1965 when Title XIX was added to the Social Security Act. The purpose of Medicaid is to provide health coverage for low-income people. Medicaid is a categorical grant program administered by state agencies with oversight by the Health Care Financing Administration, a federal agency. Individuals qualify for Medicaid health benefits through a means test. Tannen-


baum (1989), writing about Medicaid, notes that the program’s inadvertent pair- ing of acute and long-term care makes it uniquely suitable for individuals with disabilities.

The Medicaid Act contains two general concepts that are perceived as major funding barriers to assistive technology, “Medical Need’ and “Prior Approval” or “Authorization” (RESNA, 199 1, p. 8). The Medical Need criterion ties funding decisions to proof that the requested device or service is related to a medical condition (New Mexico Title XIX Utilization Review Manual, 1990). Medical Need may be narrowly or broadly interpreted, but must refer to a diagnosis, type of illness or condition which is recognized by Medicaid. Medical Need is shown, in part, by prescription and supporting documentation from physicians and other professionals. Prior authorization often involves lengthy and complicated documentation in order to allow access to Medicaid services. Some of the most important equity issues involve the inconsistencies in benefits across states, and the interpretation of Medical Necessity and Prior Approval across the states. In addition, allocation of certain Medicaid benefits may be based on age or type of disability (Markowicz & Reeb, 1989). Because Medicaid is an extremely complex program, the complexity promotes dependence on a knowledgeable professional guide in order to access benefits. Some disability activists, such as the organization American Disabled for Attendant Programs Today (ADAPT), claim that the most important inequity is the use of Medicaid funds to support what they regard as involuntary incarceration in nursing homes. ADAPT wants a sizable portion of the Medicaid budget to support community living.

Medicare

Medicare is the preeminent public health care program for elderly people in the United States. The Medicare program, Title XVIII of the Social Security Act, is divided into Part A-Health Insurance for the Aged and Disabled-and Part B-Supplementary Medical Insurance for the Aged and Disabled. In 1988, approximately 3.1 million disabled workers were covered under Medicare (Ell- wood & Burwell, 1990). Unlike Medicaid, the Medicare program is centrally managed at the federal level. The program is not means tested; eligibility is generally linked to a history of work and payment to the Social Security Trust Fund.

Steven C. White (1990) describes Medicare as “a good example of a major payer with no knowledge of assistive technology with a mechanism to learn” (p. 3). The Medicare statute contains two sections relevant to assistive technology; one relates to durable medical equipment and the other to prosthetic devices (White, 1990, p. 3). The most important equity issues involve the strict medical criteria for payment of devices. Individuals may receive support for basic activities such as toileting and toileting equipment, but not for higher level activities and services such as communicating (augmentative communication boards),

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hearing (hearing aids), and orienting (white canes for the blind). In supporting lower human functions but not functions that enhance independent living, Medi- care is inadvertently supporting the health care industry and the professional, especially the physician, to control the individual rather than supporting the individual to maintain a modicum of independence and community integration. Since Medicare is the major insurance service for the elderly, this practice is especially infantalizing for them (U.S. Congress Office of Technology Assess- ment, 1985).

Vocational Rehabilitation

Federal government support for Vocational Rehabilitation services dates back more than 70 years (RESNA, 1991). Publicly funded vocational rehabilitation came into being after World War I and has been the subject of legislation in every subsequent decade. The 7 1-year-old state-federal rehabilitation program (Title I), which provides grants to state vocational rehabilitation agencies, was funded at $1632 billion for FY 1991, the largest public, civilian funding for rehabilitation services. Other programs under the Rehabilitation Act receive a combined funding of approximately $215 million. Under Title I, state rehabilitation agencies have been established, and each state may designate a separate agency for services for the blind-this option exists with no other disability group. From the original state vocational rehabilitation agencies, programs have been added to include independent living and independent living for older blind individuals, supported employment, projects with industry, and the National Institute on Disability and Rehabilitation Research.

State vocational rehabilitation agencies are staffed by trained professionals, often not disabled. In contrast, the Independent Living program, which has approximately 66% less funding at $47 million, is run for and by people with disabilities. As a result of these budget differences and other issues, the disability community has been critical of the traditional vocational rehabilitation agencies.

Berkowitz (1987) observes that until the adoption of independent living services, vocational rehabilitation specialists dominated decision making and severely disabled individuals were screened out. Nixon (1985) also points to the rejection of severely disabled clients by a bureaucratized vocational rehabilitation program. Stubbins (1985) explores the psychological reductionism of rehabilitation professionals, which has allowed them to see the problems of individuals with disabilities only in biological and psychological terms. Mendelsohn (1989) notes that vocational rehabilitation agencies have not served individuals who are severely disabled because the measure of success posited for these programs involves the number of case closures and employability of the client. He goes on to say that under the Vocational Rehabilitation program, people’s lives are regarded as “time-limited and need specific,” and therefore, once the purpose of


the intervention has been achieved, the case is closed, leaving the client to attend to maintenance and upgrading of the technology (p. 26). Mendelsohn (1989) is also critical of vocational rehabilitation because it does not serve many elderly people. Enders ( 1989) notes that vocational rehabilitation funds many devices, but when the devices wear out, those who need a new generation of technology are usually out of luck.

Statewide Assistive Technology Programs

The Technology-Related Assistance for Individuals with Disabilities Act of 1988 has the purpose of enabling individuals with disabilities to have greater control over their lives, to participate fully in mainstream activities, to interact with nondisabled persons, and to benefit from opportunities that nondisabled people take for granted. The Tech Act was drafted and heavily lobbied for by members of the disability community. The act is an example of the new values generated by the disability community because it posits functional assessment, the results of which can be applied to enabling strategies so that individuals can live in the least restrictive environment. Tech Act funded programs attempt to integrate assistive technology into the various existing programs serving individuals with disabilities while also attempting to mainstream assistive technology to libraries, retail stores such as Radio Shack, traveling vans, and other nonhealth and social service environments. State programs attempt to develop funding sources such as revolving loan funds, information access such as the use of 800 numbers or the public television, and training of professionals and consumers.

However, the programs are not funded to provide dollars to purchase assistive technology. Further, the state programs appear to concentrate on children and adults, not the elderly or the institutionalized population. Although the tech program is popular within the disability community, some members of the disability community perceive assistive technology as threatening their lobbying efforts on behalf of funding for Personal Assistance Services. Therefore, research is needed to determine the relationship between assistive technology and personal assistance.

Civil Rights

The Americans with Disabilities Act of 1990 (ADA), the most sweeping civil rights legislation since the Civil Rights Act of 1964, contains provisions for assistive technology in employment, public services, transportation, public accommodation, and telecommunications. The disability community has recom- mended a total of $33 million to fund technical assistance to the agencies that have major implementation responsibilities: the Department of Justice, the Equal

I30 Seelman

Employment Opportunity Commission, the Department of Transportation, the Federal Communication Commission, and the Department of Education.

The ADA is the best example of new values in disability policy. The ADA associates civil rights with assistive technology. Title I of the ADA, which involves employment discrimination, uses the standard of reasonable accommodation which may be satisfied by provision of services such as acquisition or modification of equipment or devices. Title I1 of the ADA addresses program, architectural, and communication accessibility in public services and transportation. Title 111 of the ADA addresses accessibility in public accommodations, including hospitals, restaurants, hotels, and movies. Title 111 cites auxiliary aids and services as a means to satisfy accessibility. Title IV requires the establishment of a relay service for individuals who are deaf or speech impaired to access the public telephone system.

Concern has been expressed that the act will result in endless litigation and will not have a broad impact (Tucker, 1991). Because a monitoring mechanism is not in place, it will be difficult to monitor the impact of the ADA on the availability of assistive technology.

In this section, equity issues have been identified for a variety of assistive technology programs that serve individuals, and one, the Americans with Dis- abilities Act, that has potential to impact technology for larger populations. SSDI, SSI, Medicare, Medicaid, and Vocational Rehabilitation were established before the disability movement developed. With the exception of Vocational Rehabilitation, these programs allocate assistive technology resources based on assessments of deficits. However, like income support and health programs, Vocational Rehabilitation places emphasis on the professional as a decision mak- er rather than the individual with disability. These and other programs, including those of the Veteran’s Administration and special education, are characterized by complex and even bewildering administrative procedures, and by inconsistencies in receipt of services based on civilian vs. military status, work status, age, location, condition, and severity of condition. In addition, the availability of technologies and services vary according to program and type of disability. People who are blind and veterans (who are mostly male), have received special and privileged treatment (Berkowitz, 1987), while those with psychiatric disabilities are poorly served (Stubbins, 1985). Low technology, customized technology, off the shelf technology, and technology for communication and education may receive stringent review. These problems are intimately related to the equity issues that were introduced earlier and to which this article now returns.

Summarizing the Equity Issues

Concern for equity in the area of assistive technology must encompass the following: (a) technological services for individuals (e.g., funding, information,


training, maintenance, and upgrading), (b) devices for individuals, and (c) technology for populations (e.g., televisions with built-in decoding capacity).

Who Has Access to Technology?

The informed consumer advocate and those disability groups with strong advocacy resources are in an excellent position to access assistive technology and assistive technology resources, especially information. Obviously, the person who has excellent private insurance or sufficient income to purchase assistive technology and the sophistication to gather the necessary information will be in a good position to access assistive technology. Therefore, there are class, ethnic, gender, and age implications. They include the following: (a) members of some ethnic groups often have limited facility and experience with English, American institutions, technoculture and the disability movement, and (b) some ethnic groups, women, and elderly people may not identify with the technological culture of assistive technology which is dominated by high tech and professionals who are predominantly male. In addition, many public programs limit transpor- tability of the assistive device. For example, a child may communicate during school hours only, because a special education program provides an augmentative communication device for use during school but not before or after school.

An individual who qualifies for many programs may also be in a good position, and an individual who has many characteristics that do not meet program criteria may be in a poor position to access assistive technology. Technolo- gy may be most available to an individual with the following profile: a low- income, working-age veteran who has a familiar disability or condition with medical implications and who is seeking work or education. Technology may be least available to individuals who are institutionalized, who have mental illness or brain injury, who are multihandicapped, who need technology for use at home, and who are women. Elderly people and others who are stereotyped as unable to be rehabilitated, such as those with cancer, are also disadvantaged. For public technology, individuals who live in areas with large public works budgets and in states with laws covering discrimination and accessibility may have an advantage. Those who have special needs that overlap with more general needs, such as those for escalators and elevators, may have an advantage. Those with mobility problems will probably find the physical environment more accessible, and those with sensory problems will have more difficulty accessing the communications environment.

Needed research includes functional assessments of individuals and need and utilization studies. In the area of technology for populations, studies are needed to identify individual perceptions and experience with products, with housing and buildings, with transportation, and with communications systems.

132 Seelman

Which Technology is Available?

Availability is a function of social commitment-not of the technology that, for the most part, exists. The availability of assistive technology varies according to cost or complexity that, in turn, is a function of social commitment. It also varies based on the market, which is composed of many third-party payers. Availability depends on the now familiar factors of individual income, medical condition, program criteria, use, availability of a cadre of trained people and of information, and the values of the dominant culture. Assistive technology is more available for basic activities of daily living such as toileting, and less available for higher level activities such as communications. Thus, portable potties may be available while communication boards and housing modifications are not. In addition, cutting edge technology and technology for each stage of progressive illnesses such as multiple sclerosis may be less available.

For public technology, costs and benefits are issues. Technologies that serve the larger population have a clear advantage. Old technologies, such as curb cuts, are available; new technology, such as voice output for automatic teller machines, is not.

Research is needed now to assure that the Information Age is here for everyone. Application of universal design principals such as redundancy of information output in voice and text will reduce the possibility of ghettoization resulting from inaccessibility.

Who Decides on the Technology?

A number of persons have decision-making roles in the choice of assistive technology (RESNA, 1987). Some are involved with selection/prescription; others are involved with payment. Depending on the program and the condition, a variety of professionals are involved, including physicians, therapists, case man- agers, and in cases involving litigation, attorneys. Third-party payers are routinely involved, including claims-level persons, and indirectly, policy-level persons, and the general public whose attitudes determine resource commitment. In addition, employers and businesses concerned with public accommodations will be involved under the Americans with Disabilities Act. The consumer, family, and friends often have an insignificant role. If the consumer has a condition that does not require evaluation, as in the case of deafness and purchase of a telecommunications device for the deaf, the consumer can purchase equipment off the shelf. Although this reduces the number of decision makers, it also reduces the potential for public funding.

Research is needed to determine whether or not a voucher system and other innovative funding mechanisms would be effective in simplifying the decision- making process, thus reducing the number of decision makers, the impersonality


of the process, and perhaps empowering individuals with a disability, their fami- lies and friends.

Decisions about public technology are routinely marketplace decisions, i.e., determined by demand and cost. Professional standard-setting organizations are important because they can recommend technical standards for equipment. Stan- dards could, for example, determine whether or not computers have extra ports for peripherals used by people with disabilities.

Who Controls or Determines the Allocation of Assistive Technology?

This question is a systems and systems-environment question. Clearly, the federal system of government and division of power among branches of government are important factors. The Congress and the president have been important actors in the latest series of disability policies. State governments also have considerable decision-making power in some programs, especially Medicaid. Agencies within the executive branch with large budgets and staff, such as the Social Security Administration and the Public Health Service, have considerable control. Assistive technology policy is, to some extent, captured by these agencies, which were established before the advent of the disability movement. The sheer size of agency data collection budgets permits them to influence human services planning and policy by determining the nature of the data that will be collected. Research is needed to determine the impact of diverting SSDI and SSI funds from institutions to assistive technology and other long-term support services.

Disability consumers and related organizations have made an impact on the values and substance of new legislation and amendments to old legislation. They compete with various long-established institutions for increased control over vocational rehabilitation and resources for long-term support. Because of more pressing issues, the disability movement has not spent very much of its political capital on accessible products and information systems. However, the Decoder Circuitry Act, which mandates the integration of a decoding chip into a television set to show audio portions on the screen in text form for the deaf, is an indication that the community can be successful in the pursuit of such a strategy.

In conclusion, an equitable and mature assistive technology policy must reflect the impact of a cutting edge medical technology and increased numbers of older people and individuals with disabilities in the population. Policy would then institutionalize values that recognize a population with needs, not a special needs population (Zola, 1990). The medical research establishment has long been involved in innovative medical technology that obscures the difference between natural and artificially induced life. Distinctions based on notions of normal/unimpaired and abnormal/impaired support stereotypes rather than useful social values. Normalization of need would involve policy that is sensitive to

134 Seelman

the human life cycle and to changing conditions. Dollars would be allocated to programs for wellness and long-term support services so that individuals could maintain themselves in the least restrictive environments. Needs would be determined by a variety of measures including functional assessments (Verbrugge, 1990). Accessibility would be a civil right associated with freedom of speech and assembly. Finally, whether or not equity can be served in the absence of a minimum income that would transform a client into a consumer is an important question.

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KATHERINE D. SEELMAN earned her doctorate in political science from New York University. She has written and lectured widely on technology and public policy. Seelman chaired the U.S. Congress Office of Technology Assessment Advisory Committee on International Competitiveness in Electronics and was project officer for the National Council on Disability national study of financing assistive technology. Seelman, who is hard of hearing, has focused particular attention on communication accessibility for individuals with sensory impairments and serves on the board of a number of disability-related organizations.

assistive technology policy: a road to independence for individuals with disabilities

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