Steve Mendelsohn JD, Roger O. Smith, PhD, OT & Todd Schwanke, MSE, ATP
On Saturday June 21, 2003 the ATOMS Project held a town hall meeting on legal issues and assistive technology outcomes (RESNA 26th International Conference on Technology and Disability: Research, Design, Practice and Policy). The session was led by Steve Mendelsohn who is an attorney with twenty years experience in disability law and public policy specializing in assistive technology (AT) and an ATOMS Project partner. The session was supported by Roger O. Smith and Todd Schwanke of the University of Wisconsin-Milwaukee where the ATOMS Project is headquartered. Approximately a dozen individuals, primarily representing AT research and practice, participated in the meeting to discuss the legal issues arising in connection with assistive technology outcomes measurement and research. The session began with Steve Mendelsohn presenting a number of the key questions prepared for the meeting and discussing the background to them. Twenty-seven questions were posed in the following seven subject areas.
- The Context of Research (Why we need to do outcomes research and what general principles governing evaluations generally apply in unique ways to AT.)
- Cost Benefit and Cost Effectiveness (Legal definitions of these terms and instances where cost benefit or cost effectiveness assessments give rise to mandated legal consequences or are required as a condition for certain activities.)
- Leveling the Playing Field (Legal factors making outcomes research different or harder with AT than with other interventions.)
- Definitions of Disability (How different definitions of the target population in different settings complicate comparative outcomes research.)
- Privacy (Legal limitations on the collection, aggregation or dissemination of data, including individualized or identifiable data.)
- Mitigating Measures (How impact of AT can be measured if its very use renders its users non-disabled under laws defining disability only after mitigating measures have been taken into account, and whether under the ADA court decisions AT is a mitigating measure at all.)
- The Marketplace (The role played by outcomes data on the participation in AT of private sector entities, including such matters as the redress available to firms who believe that outcomes data is unfair or inaccurate.)
A handout was provided for the participants of the meeting providing the list of the 27 questions. The detailed background to these questions, written by Mr. Mendelsohn, is provided at the end of this document in Appendix A.
The purpose of the Town Hall meeting was to develop a matrix of importance, timeliness and controversiality of the legal issues surrounding the conduct and utilization of AT outcomes research. The team also sought to gain the views of persons with experience in different areas of AT practice concerning whether any key issues had been omitted or whether any of the identified issues were in fact not serious concerns.
The town hall meeting started with a presentation of each of the questions with background, followed by unstructured discussion. The participants were then asked to identify their top three in terms of the following criteria: a) urgency b) interest c) controversy. Each participant, in turn, discussed these questions and their top three issues of particular interest. The resulting tally of the questions identified by participants revealed that each of the twenty-seven questions fell within at least one of the participant's top three items.
Subsequent discussion of the group about the array of interests, the urgency, and the controversial aspects of the questions confirmed that the relevant questions were numerous and diverse. It was apparent that a large number of the questions tended to be perspective specific or service system specific. For example, some of the funding-related legal issues were of particular interest to attendees in the area of augmentative communication. Additionally, the issues surrounding privacy and data logging were significant to the AAC clinicians and researchers since data is beginning to be collected about AAC devices and their users. This discussion also highlighted that many of the issues listed by practioners from one area of practice were not listed by individuals from other areas of practice. Consequently, it was surmised that adequate discussion and treatment of legal issues surrounding assistive technology outcomes must be provided from a larger more encompassing perspective that can include multiple perspectives of clinicians, vendors, researchers and users, as well as from the vantage point of differing disability groups and service systems. Otherwise, important legal issues would be left out of discussion and deliberation.
Two particular questions seemed to resound most frequently within this group. The first of these was under the subject area - The Context of Research. It was, "If AT Outcomes' research shows positive or negative results, does that create any legal requirements for providing or denying AT?" The second question fell under the subject heading, The Market Place: "What if a manufacturer disputes negative results of research?"
While this town hall meeting did not plan to arrive at decisions or recommendations, the town hall meeting did confirm the breadth and the intensity of these legal issues in our field. Future developments in AT outcomes research and data collection must vigilantly consider the legal implications during the development process.
Appendix A: Background to Questions Presented at Legal Town Hall
Subject I. THE CONTEXT of RESEARCH
Subject
II. COST BENEFIT and COST
EFFECTIVENESS
Subject III. LEVELING
the PLAYING FIELD
Subject IV. DEFINITIONS
of DISABILITY
Subject V. PRIVACY
Subject
VI. MITIGATING MEASURES
Subject VII. THE
MARKETPLACE
Subject I. THE CONTEXT of RESEARCH
(a) QUESTION: If AT outcomes research shows positive or negative results, does that create any legal requirements for providing or denying AT?
BACKGROUND. If there were uncontroverted medical research that a certain drug saved lives, shrunk inoperable tumors, had been tested, was free of side effects, and had been approved by the FDA, the refusal of an insurance company to provide it would probably not withstand a legal challenge. Similarly, if a school student's IEP showed that the child was facing educational deficits because of an inability to see the board, the refusal of the school system to provide any sort of auxiliary aid or service, accommodation, AT or compensatory tutoring would likewise be actionable as a likely violation of IDEA.
What we are asking here is whether there are any cases in which a positive evaluation or outcome study of AT would create a situation where some service system were required to make greater use of it, or would be required to provide it to a given individual? The opposite is also important. Is there any case where some negative outcome study would bar the use of AT or legally justify its denial?
(b) QUESTION: What legal strategies are available for using existing outcomes data to compel funders or policymakers to make greater use of AT?
BACKGROUND. What we have in mind here are two things. First, whether AT outcomes data exist, that if more effectively used or more widely known would encourage a service system to make greater use of AT. If so, we need to know where this data can be found and how it can be marketed.
(c) QUESTION: Does the term "AT" or "assistive technology" have a sufficiently standard and recognized meaning to allow for outcomes research done in one area (such as employment or education) to be used as evidence of probable benefit in another?
BACKGROUND. Although AT has a statutory definition in a number of programs, outcomes measurement techniques tend to be specific to the program in question. For instance, the fact that van lifts may demonstrably improve the ability of wheelchair users to get to work and therefore enhance employment does not necessarily indicate anything about the impact of such technology upon education. Moreover, the definitions of AT may vary under different service systems, and this also makes comparison difficult. Thus, even if we know that a given AT device improves a specified function (say ability to move independently, to access print or spoken information), proof that this has a measurable impact on achieving the goals of one service system may not justify any presumption that it would do the same in another. Multiple, repetitive research, going well beyond the kind of replication of findings that all good science demands, may thus be required, unless some legal means for bringing about generalization of findings exists.
(d) QUESTION: To what extent does the law play a role in governmental or health-insurance industry decisions about what technologies will be evaluated and about the evaluation criteria and methodologies that are used?
BACKGROUND. Apart from uncertainties as to evaluation methodology and criteria, one of the big obstacles to AT outcomes measurement is the lack of resources for such efforts and for the development of appropriate techniques, data collection instruments, tracking measures and validation procedures. But huge amounts of resources are committed to the evaluation of medical technology as well as to the evaluation of a variety of educational inputs and employment enhancement strategies. People may have ideas about how the funders and designers of research could be induced to put admittedly often low-incidence AT on their radar, and the key related question is whether any legal arguments or leverage exists for pushing AT to the front of the queue.
(e) QUESTION: In what ways does the law support or prevent participation by AT users, knowledgeable clinicians, AT manufacturers or other involved parties in the design and management of AT outcomes research?
BACKGROUND. Of course, whoever proposes to conduct funded research will be involved, but because AT research presents a number of unique issues, unlike those encountered with other inputs and interventional modalities, the need for external support, guidance or oversight may in many cases be greater than in other contexts or than conventional advisory board requirements will satisfy. Does the law need to provide some opportunity for new and diverse kinds of participation in the development and implementation of a research agenda?
(f) QUESTION: Are clinical trials, double blind placebo-controlled studies, or other traditional outcomes research techniques applicable to the measurement of AT devices or services?
BACKGROUND. In the medical system, clinical trials are the main means by which pharmaceuticals (and increasingly surgery) and other procedures are evaluated for safety, efficacy and widespread use. In the medical system, the current clinical trial system operated under the auspices of the FDA may not be appropriate for, available for, or used to evaluate AT devices or AT services. But this method, including double-blind placebo controls of the kind that are obviously impossible with much AT (you cannot tell a person they have a powered mobility device if they don't move anywhere when they turn it on), is the gold standard. Sometimes, as in the case of drug approval, or often for coverage under Medicaid, it is a legal prerequisite to inclusion, and its failure to occur a legal justification for exclusion. We need to know whether alternative research methods exist and whether the law will countenance their substitution.
(g) QUESTION: How can we influence the legal definition of "medical necessity" so that the health care system will acknowledge the functional improvements that AT brings about?
BACKGROUND. Even if irrefutable evaluation protocols and unassailable statistics demonstrate that AT helps people to work, learn, be more independent, happier and otherwise more fulfilled and engaged in society, it by definition does not mitigate, remediate or cure underlying organic conditions. That being so, the issue becomes whether the law provides any basis for pressing a new definition of acceptable inputs and outcomes for the medical system. If not, even the most elegant outcomes measurement techniques may avail us nothing, where nothing more important than improved quality of life, independence and autonomy result.
(h) QUESTION: What broadly accepted techniques or criteria exist for measuring the outcomes of AT services, or for measuring the proportion of an outcome attributable to the device, the services, and the environment?
BACKGROUND. This is a legal issue because we need to be able to use outcomes data, once measured, to influence the use of AT. If our measurement tools or outcome criteria are not sound, then arguing for investment in AT services for example will be difficult, to say the least. We need to know if the legally cognizable procedures for doing trials in various settings are even available for services. Just recently, controlled evaluations of surgery have begun to be done. Can the methods used in these be applied usefully to AT services?
Subject II. COST BENEFIT and COST EFFECTIVENESS
(a) QUESTION: Are cost benefit and cost effectiveness appropriate issues for AT outcomes research? If so, what should they be compared to?
BACKGROUND. The kinds of outcomes that AT facilitates are unique. Other modalities cannot bring them about. If surgery or pharmaceuticals could restore function, they would typically be used. With the exception of some in the community of people who are deaf, few instances of people refusing "cure" have been encountered. So the question with AT in this regard becomes what to compare its cost effectiveness to. One can of course compare alternative AT devices or configurations, but this presupposes the acceptance of AT as a modality of primary recourse. In no service system does this level of acceptance yet appear to have been reached.
(b) QUESTION: Assuming cost benefit and effectiveness are relevant and can be measured, does the law give any guidance on how much cost is too much, how much benefit is enough, and how these decisions are made?
BACKGROUND. In every service system and setting, funders and policymakers reserve the right to grant or withhold, to incorporate or exclude, various devices and services based on assessments of cost benefit or cost effectiveness. Accordingly, we must ask whether there are circumstances in which a negative assessment of cost effectiveness, notwithstanding an indisputably positive outcome, will warrant or justify the withholding of AT. We must also ask whether the law offers any recourse against such decisions, a question that must be answered on a service system by service system, program by program, person-by-person basis. If it is generally legal to make individualized or programmatic funding decisions based on global or individualized assessments of cost effectiveness and cost benefit, then the question of who makes such assessments, and on the basis of what data, becomes of paramount legal and practical significance.
(c) QUESTION: How do we determine the time periods within which outcomes should be measured?
BACKGROUND. With most interventions, their use is accompanied by some expectation of the timeframes within which they are expected to show results. With AT the assessment of applicable time horizons becomes unusually difficult, because many different stages and levels, as well as multiple outcome measures may be involved. For example, in an employment setting, installation of the technology (especially where, as with a computer system for example, there are networking issues), reflect a first plateau. Once the technology works, the next level is its mastery and competitive use by the employee and, where applicable, its integration into the activities of colleagues. Then there is the question of performance and productivity and output. Finally there is acceptance. Maintenance and technical support, downtime - all these are potentially important outcome measures, but all are governed by different timeline expectations.
Subject III. LEVELING the PLAYING FIELD
(a) QUESTION: If outcomes research shows that AT improves student performance on competitive exams, should the law treat such AT as a "reasonable accommodation" or an unfair advantage?
BACKGROUND. Assistive technology advocates believe that AT levels the playing field and that it is an appropriate accommodation to enable people with disabilities to show their ability and to be tested on what matters, but to others, particularly those competing for college admissions, scholarships, school rankings or other pieces of the shrinking social pie, what AT service providers call reasonable accommodations or modifications others may call affirmative action and unfair help.
(b) QUESTION: Can or should outcomes measures be developed for quantifying the impact of various AT applications on average outcomes, and if so, how should such techniques be used?
BACKGROUND. Right now, there are no guidelines for how schools or other competitive institutions deal with AT. There is little question that various reasonable accommodations are required for tests, including AT in some cases, but states are under no national requirement to allow the results of tests taken with AT to be taken into account in determining students' eligibility for graduation or the kind of exit credential they will receive.
Subject IV. DEFINITIONS of DISABILITY
(a) QUESTION: If AT devices can benefit people with functional limitations not serious enough to meet the legal definition of disability, should outcomes measures and research take such people into account?
BACKGROUND. Devices that are commonly used as or viewed as assistive technology, whether grab bars and non-slip flooring in the homes of older persons or ergonomically designed furniture in offices, can prevent or delay the occurrence of disability. These outcomes, even though they consist in things that do not happen or that happen later, differ from the kinds of outcomes we normally think about, but they are increasingly important. We need to analyze how and whether the law countenances the collection and use of such data. Currently, prevention is difficult to measure, is not formally incorporated in "scoring" techniques used by Congress or the OMB (except in limited circumstances), and may not be supported by available information in connection with people who are not officially categorized as people with disabilities. The law may not even authorize the provision of AT, for preventive purposes or otherwise, to people not technically or officially disabled. With the convergence of aging and disability, eligibility standards, giving rise to new outcomes criteria, may need to be developed.
(b) QUESTION: Except for the medical system, does the law allow AT devices and services to be provided to people who can benefit from them, but who do not meet the eligibility standards for disability funding and programs?
BACKGROUND. It is probably not very useful to speak of whether the law "allows" AT devices and services to any group of people. The law never allows or bars. Where the law comes into it is really on the level of payment, and sometimes on the level of whether an institution needs to permit the use of AT as a reasonable accommodation. If you ask the question that way, the answer is that in some settings an individual's eligibility for AT funding will be predicated on meeting some program or law's definition of disability, while in other settings other standards will apply, resulting sometimes in people who would not meet any widely used definition of disability qualifying for equipment, and other times resulting in people who manifestly qualify as disabled under any definition still not getting AT.
Ironically, this is mostly the case in the medical system. A person could have every known disability that the ADA ever heard of but still have it deemed by his/her insurer that a particular request for a given item of AT was not "medically necessary." Someone else, with differing or fewer disabling conditions, perhaps with a temporary disability such as a broken leg requiring a wheelchair for a period of time, would not be a person with a disability, since the courts have expressly disallowed temporary limitations, at least under the ADA, but would qualify for the AT device for mobility during the convalescence period or the period of impairment.
The overall problem is that disability status is rarely the determinant of eligibility for AT. Eligibility for the services of a given program or funding source is the point at which the relevance of disability comes into play. But even after a person has been deemed eligible for the services (the individual is covered by the medical insurance, faces barriers to participation in education that warrant the provision of special education services, requires auxiliary aids and services to participate in a given activity or benefit from a particular mainstream program), once these threshold determinations are made, the question of eligibility for the provision of AT, or permission to use one's own in a particular setting, is a separate determination, based on the individualized assessment of need, the plan of service, or the alternative accommodations the entity might offer. For example, even though demonstrably meeting the ADA's test of disability, an individual is not free to choose their own accommodations. If the college boards were offered to a blind person with the assistance of a reader and amanuensis, the only basis for refusing that and insisting on the use of AT instead would be that this approach could lead to a poorer result. It would still be an argument battled out on the facts.
With the exception of the medical system, which does not generally recognize the category of disability at all, I would say it is generally the case that the programs and service systems that provide or pay for AT will only do so for persons who meet their definitions, not by any stretch uniform ones, of disability.
Subject V. PRIVACY
(a) QUESTION: Are there any general privacy requirements that would cover all AT outcomes research, or do the rules depend on whether one is looking at medical, educational, employment, independent living, or other outcomes?
BACKGROUND. Generally speaking, privacy issues in medical research are now governed by HIPAA, in rehabilitation by provisions of the Rehabilitation Act, and so on. But there are general requirements applicable to any research done in academic or clinical settings (such as the need for an IRB), and there are additional requirements (including approval requirements) when federal funds or facilities are involved. We need to know the scope of current privacy requirements as they relate to medical, social, educational, demographic or other research bearing on AT use or AT users, providers or manufacturers.
(b) QUESTION: Are some service systems better suited to the conduct of AT research than others, given differences in the rules governing data collection, aggregation and dissemination in the various service systems utilizing AT?
BACKGROUND. We may find that legal provisions make it more feasible to conduct outcomes research and apply outcome measures in the VR or education than in the medical sectors. We need to marshal our experience to determine if this is so, and if there are any system-specific changes that need to be made to facilitate needed research.
(c) QUESTION: Does the affiliation of the researcher have any significant impact on the privacy rules governing the conduct of AT outcomes research?
(Types of researcher affiliation might include a government agency, a government-funded grantee or contractor, a private clinician, a manufacturer etc.)
BACKGROUND. Research is conducted by a variety of parties with varying relationships to AT. Manufacturers would not be subject to IRBs. Clinicians working with manufacturers may acquire an ambiguous status. We need to figure out, perhaps with reference to other kinds of research, perhaps with a little help from other kinds of research, by and to whom AT outcomes research is accountable.
(d) QUESTION: What requirements about user or service-recipient informed consent apply to AT outcomes research?
BACKGROUND. Informed consent is central to any individualized research. Nowadays, research can take the traditional form of asking people questions but it can also consist of newer methods such as automated tracking of the use of AT. We see this in the recording of the syntax achieved through the use of augmentative and alternative communication (AAC) devices. Likewise, individualized research can extend to obtaining information, opinions or reports about people from therapists or from agencies. We need to think through how these requirements apply to AT outcomes research, and exactly what people are being asked to give their informed consent to, and when that consent is required.
(e) QUESTION: Do manufacturers or service-providers have the right (with or without informed consent) to monitor AT usage through computerized record keeping, remote telephonic access or other forms of automated tracking?
BACKGROUND. This question arises in connection with two distinct but intersecting sets of developments. First, increased interest in and use of telemedicine and telerehabilitation have created a group of devices, many of which would fall within the ambit of AT, whose very function it is to remotely monitor one or another environmental or somatic parameters, including heart rate, blood pressure, temperature, etc. Simultaneously, as the need and desire for AT usage and outcome data has grown, efforts have begun to monitor the use of AT devices for research purposes. This is most common in the area of alternative and augmentative communication devices (AAC) where word usage, keystrokes and other dimensions of use can be monitored, and it is a technique that is likely to come into use in connection with other AT devices as well.
What separates this kind of research from traditional clinical studies is that in those studies various uses, devices, users and settings were assessed and compared under controlled conditions. The new forms of research involve ongoing monitoring while devices are in regular use.
Issues of privacy and informed consent are complicated in real-life settings. Various levels of intrusiveness are possible, and various options for minute-to-minute opt-in or opt-out by users can be implemented, depending on the nature of what is being done with the equipment at any given time.
(f) QUESTION: How can the confidentiality of AT users involved in outcomes research be protected?
BACKGROUND. The use of AT devices often cannot be kept confidential, owing to the nature of the equipment. Likewise, the universe of appropriate AT users in some settings and with certain diagnoses, functional needs and outcomes may be sufficiently small as to make identification possible, even after individualized data have been aggregated and redacted.
(g) QUESTION: Do the new HIPAA regulations have any impact on outcomes research conducted in non-medical settings?
BACKGROUND. The new healthcare system privacy regulations nominally apply only to research done by people within or done with data drawn from the health system. But uncertainty appears to exist about situations of dual-use technology and services. A device paid for in whole or in part through a Medicaid buy-in program established by a state to help implement the Ticket to Work Act may well be used, indeed ideally should be used, for employment, but it is not clear whether even vocational outcomes data involving that equipment is covered by HIPAA owing to the source of the funding.
Subject VI. MITIGATING MEASURES
(a) QUESTION: Are AT devices and services "mitigating measures" as the Supreme Court has used that term in interpreting the ADA?
BACKGROUND. The Supreme Court has not defined the term "mitigating measures," only given examples. For example, would we consider eyeglasses to be AT? If so, then at least this one form of AT has been held to be a mitigating measure. Interestingly, the main area where the scope of mitigating measures has been expanding is that of medical devices and treatment. We are very close to the point where any medical treatment that would stabilize a condition and thereby eliminate recurrence of the events limiting major life activities, that any such medical technology or intervening measure does qualify as a mitigating measure. It is also harshly true that the courts have largely refused to address, or in fairness to them perhaps have not been so often called upon to address, the question of what happens if the mitigating measure fails. What happens if, despite blood pressure control through the use of antihypertensive drugs, the store clerk continues to have dizzy spells and passes out while talking to customers. Such occurrences would certainly limit the major life activity of working. The courts would probably require that medication be taken to qualify for coverage under the ADA, but they have not been very honorable about facing up either to the consequences of treatment's failure to work or, even more significant, of what to do about people who are unwilling or unable to utilize common mitigating measures because of side effects or highly individualized contraindications.
There are no cases holding wheelchairs, for instance, to be mitigating measures. It is my suspicion that they will not be. I think the test the Supreme Court will use is how nearly like everyone else's is a person's access or performance after the measure is applied. So long as the environment needs to remain accessible for the AT to have much effect, and so as the manner the individual interacts with the environment in the presence and with the use of the AT is still markedly different from that of a person not needing AT, the likelihood is that AT will not be deemed to constitute a mitigating measure under the ADA.
Remember too, that state civil and human rights laws vary. Some states do not require that mitigation be taken into account in determining disability status. In those instances the issue would never come up.
(b) QUESTION: If AT devices are mitigating measures, and if the use of such measures results in people no longer being classified as disabled under the law, will outcome studies which prove efficacy of AT have the paradoxical result of causing AT users to lose civil rights protections because they are no longer legally disabled?
BACKGROUND. The Supreme Court has made clear that mitigating measures must be taken into account in determining whether people are substantially limited in major (now called "core") life activities. It is precisely the role of AT to provide just such functional capabilities. But, that being so, outcomes research faces a paradoxical, not to say a perverse, conundrum. To the degree that our research documents the positive role of AT in making performance of major life activities more possible, to just that extent we are guaranteeing that many AT users will be found not to have a disability for purposes of the protection of the law. Because the definition of disability under the ADA and its definition under certain (but not all) other statutes are linked, the mitigation requirement is likely to be applied to eligibility for certain services as well. Thus, the finding that AT works could easily be used to deny people services as well, and will be so used in due course, perhaps very soon given current budgetary forecasts.
Subject VII. THE MARKETPLACE
(a) QUESTION: What if a manufacturer disputes negative results of research?
BACKGROUND. Control of the publication of research findings generally rests with those who funded the studies. In fields such as pharmaceuticals where research has been primarily funded by the industry, this has resulted in several notorious instances, and likely innumerable other undisclosed instances of suppression of adverse results. Manufacturer resources to fund research in the AT field are likely to be quite limited. Someone else is likely going to have to pay. But this does not mean that the manufacturers will be indifferent to the results or will sit idly by as negative results undermining their claims are published. We need to consider what measures are at their disposal in such situations and what kinds of manufacturer or vendor input into the design of outcomes measures and research can serve to forestall so far as possible disputes over methodology and over quality of results.
(b) QUESTION: In team-based AT applications, how does one avoid recrimination and blame shifting over bad results?
BACKGROUND. Particularly with complex team-based applications of AT, involving hardware, software and services, there may be more than ample room for dispute over relative responsibility when results are disappointing. The best device is of potentially little value without adequate training or support. The best services may amount to little in the absence of appropriate equipment. No one likes being held accountable for failure. No one is likely to get very far arguing that a pharmaceutical failed to demonstrate efficacy because the people running the study didn't know how to inject it. But with AT, the range of disciplines and practitioners involved, and the structure of the field, significantly and properly limit the opportunity for creating absolute uniformity and comparability in all phases of the AT process and relationship. Who will decide where the failure really lies and what resources they will have to plead their cases are matters of potentially devastating concern to the credibility of outcomes research. Owing to the interaction of device, service-provider(s) and environment or use-infrastructure, AT outcomes measurement and evaluation will never resemble the single-input, one-variable model that positivist and reductionist research finds familiar and supremely credible.
(c) QUESTION: How does the law treat universally-designed technology, and what special issues need to be addressed in developing outcome measures for evaluating its impact?
BACKGROUND: The law treats universally designed devices (UD) differently from assistive technology in various ways. Some of these are critical to outcomes measurement.
First, most service systems define relevant technology in AT terms. In special education or in rehabilitation services the primary categories of aids and devices available are defined and expressed in AT terms. This is also the case in the Assistive Technology Act (quotations and citations omitted).
Justifying a request for technology thus becomes more difficult when UD is involved, partly for these definitional reasons but more because the purpose of the device is ironically brought into question when it is universally designed. This problem can be seen most plainly in tax adjudication. In the period before 1993, televisions did not come equipped with closed-caption decoder technology. Anyone needing that technology would have to go buy it separately, in a stand-alone unit costing several hundred dollars. It was not difficult either to document the purpose of the decoder to mitigate a hearing impairment, thus making it eligible for deductibility as a medical expense, or to separate for accounting purposes the cost of the decoder from that of the basic TV. Today, when decoders are incorporated into TV's at the point of manufacture, their add-on cost is fortunately small, but were that cost higher, as it would be say in the case of a car with factory-installed hand controls, separating out the cost components might be more difficult. Also, proving that the choice of car model (in the event the car itself were far more expensive than another model) might present an issue, if your choice of the more expensive model were dictated by the availability of or compatibility with the accessibility add-ons.
Assistive technology generally costs more than standard technology, but where this additional cost raises no conceptual objections from most funders who support assistive technology in one context or another, the excess cost of universally-designed products often does raise hackles. These can be simply procedural--how do we split one device into two invoices. Or it can be substantive, as in -- we do not pay for standard devices but only for assistive ones.
From the outcomes measurement standpoint, the complexities associated with UD relate again to the ability to hone in on the devices being evaluated and compared. AT devices might well be prescribed, making comparison or characterization of users more readily possible for purposes of any sort of follow-up investigation. Universal devices, by contrast, are more likely to be distributed through standard commercial or other non-medical, non-specialized systems.
In addition, features of the UD device may make outcome comparisons with people using AT for the same purposes difficult. For example, only a single model of microwave oven is currently available with speech output of its settings and options. To compare microwave use between people with and without vision, even if access to this device were controlled for, would be meaningless under those circumstances. To compare microwave utilization between people with and without sight using this same model would involve a sample too small to yield any reliable, let alone significant, results.
A final issue is definitional. Whereas AT can be defined by the purposes for which and the audience to which it is marketed, as well as the unique or compensatory functions and features it includes or supports, defining universally designed technology is not always that simple. For one thing, while an item would not be deprived of the character of AT simply by reason of the fact that a certain proportion of its intended users could not in fact access or operate it, due to complexity or other factors that did not relate to inaccessibility per se, the same cannot be said for universal design. How many people with the given disability or functional limitation need to be able to use the device and to what extent before, lacking a marketing or legal definition, we can say the product is universally designed. Many a device that has redundant voice input is helpful to people with various mobility disabilities and to people with vision disabilities if the buttons are not clear, but lacking parallel voice output these people would hardly regard the device as universally designed, though still it provides some enhanced functionality at the input end.
Some devices have their relative universality discovered only accidentally by consumers, while others are consciously designed to make a feature usable in ways, if not by people, that are new and expansive (such as hands-free cell phones). But lacking clear standards of definition and source, qualifying UD devices for outcomes research remains problematic.
The ATOMS Project and this work are supported in part by the National Institute on Disability and Rehabilitation Research (NIDRR), grant number H133A010403. The opinions contained in this publication are those of the grantee and do not necessarily reflect those of the NIDRR and the U.S. Department of Education.
© 2004 - R2D2 Center at the University of Wisconsin-Milwaukee.
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