Web Posted on: August 24, 1998

Disability's New Paradigm:
Implications for Assistive Technology and Universal Design

Katherine D. Seelman, Ph.D., Director
National Institute on Disability and Rehabilitation Research
U.S. Department of Education
600 Independence Avenue S.W., Washington D.C. 20202-2572, USA
tel: + 1 202 205 8134 ttd: + 1 202 205 5479 fax: +1 202 205 8997
email: Kate_Seelman@ed.gov

1. Introduction

This paper will provide an overview of Assistive Technology (AT) in the United States, and assess the implications of the new paradigm in disability research on AT and Universal Design. In 1997, a report commissioned by the Congress entitled Enabling America: Assessing the Role of Rehabilitation Science and Engineering was published by the Institute of Medicine/National Academy Press [http://www.nap.edu/readingroom/books/enabling/]. This report identified the National Institute on Disability and Rehabilitation Research (NIDRR) as the primary and largest Federal Agency concerned with disability and rehabilitation research and with AT. NIDRR accounts for approximately half of all federal R&D expenditures in rehabilitation science and engineering [http://www.ed.gov/offices/OSERS/NIDRR/info.html]. The two NIDRR funding mechanisms that are most closely related to AT are the Rehabilitation Engineering Research Centers (RERCs) and the Technology Act Projects.

2. Overview of AT in the USA

The definition of AT devices from the Technology-Related Assistance for Individuals with Disabilities Act (Tech Act) of 1988 [PL 100-407] is: "…any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified or customized, that is in use to increase, maintain, or improve functional capabilities of individuals with disabilities."

2.1 AT Legislative Initiatives in the US

There have been several major pieces of US legislation related to AT. All formally recognize the importance of AT for individuals with disabilities and support different approaches to its development. The Rehabilitation Act of 1973 [US PL 93-112] established NIDRR and its research and development programs. The Tech Act supports the development of consumer responsive projects at the state-level, which provide AT to individuals with disabilities through various state-funded programs. The Americans with Disabilities Act of 1990 [US PL 101-336] provides for the full integration of individuals with disabilities in employment, government services, public accommodations, and transportation. The Telecommunications Act of 1996 [PL 104-104] and the Television Decoder Circuitry Act of 1990 [47 USC 303,330] both address accessibility in the information age.

2.2 Epidemiological Studies of AT

There have been several attempts to estimate the number of actual users of AT in the US as well as the number of potential users. In 1990, NIDRR and the National Center for Health Statistics co-sponsored a survey that was part of the National Health Interview Survey of 1990. This study found that about 13.1 million Americans (5.3% of the population) were using AT because of physical impairments. About 2.5 million additional individuals expressed a need for AT they did not have [LaPlante MP et al., Technology and Disability 6:17-28, 1997]. A subsequent study found that the use of AT has increased dramatically over the past decade, due to the aging of the population, technological advances, public policy initiatives, and changes in the delivery and financing of health care [http://www.cdc.gov/nchswww/releases/97facts/97sheets/disable.htm].

2.3 The Availability of AT in the US

NIDRR has taken a lead role in establishing the most comprehensive database of AT that is available in the US. Over 23,000 items of AT are listed on ABLEDATA, which provides detailed information and contact information [http://www.abledata.com/].

2.4 Linking Who has Information with Who Needs Information

One of the critical areas NIDRR has identified is the problem of rapidly linking individuals and families who need information about AT with appropriate information sources. NIDRR supports the National Center for the Dissemination of Rehabilitation Research (NCDDR). The NCDDR's purpose is to enhance the dissemination efforts of NIDRR-funded research projects and to increase the accessibility of research outcomes for the benefit of their consumers [http://www.ncddr.org/].
The National Rehabilitation Information Center (NARIC), also supported by NIDRR, has collected and disseminated the results of federally funded research projects, and maintains a large database, REHABDATA, which includes citations from various sources [http://www.cais.com/naric/].

2.5 Public and Private Entities Concerned with AT in the US

There is a broad spectrum of activity with respect to AT in both public and private sectors in the US. At the federal level, the Interagency Committee on Disability Research (ICDR) is the focal point for the coordination of AT [http://www.ncddr.org/icdr/].

2.5.1 Government Agencies

There are two basic categories of government agencies, those that support AT research via discretionary funding mechanisms and those that provide payments via entitlement mechanisms to provide AT to individuals in need. Research agencies are typified by agencies such as NIDRR, the Department of Veterans Affairs, [http://www.va.gov/resdev/ps/psrrd/rehab.htm], the National Institutes of Health , and the National Science Foundation [http://www.nsf.gov/]. The Department of Veterans Affairs publishes the Journal of Rehabilitation Research and Development, one of the oldest and most respected peer-reviewed journals that routinely publishes AT-related research.
Payment for AT services includes federal and state funds for Medicaid, Vocational Rehabilitation, Medicare, and Special Education. Despite these governmental efforts, there are still too many cases in which consumers must pay "out of pocket" for AT they need themselves.

2.5.2 Private Sector

The private sector concerned with AT includes professional societies, advocacy and consumer organizations, service providers, and manufacturers. Professional Societies such as the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), publisher of Assistive Technology [http://www.resna.org/]. RESNA is a membership organization, which represents the interests of and provides support for rehabilitation engineers and others involved in AT. Members include not only rehabilitation engineers, but also speech/language pathologists, occupational therapists, physical therapists, educators, developers, manufacturers, consumers and vendors. NIDRR and RESNA have a relationship that is a model for collaboration. Elements of the model include: shared values, similar constituencies, and distinct but complementary missions and functions. It is a partnership born of need and service to users. RESNA is a forum for discussion and dialogue about research and outcomes for the NIDRR-funded rehabilitation engineering research centers. Through a NIDRR-administered competitive award process, RESNA now provides technical assistance and support to the 56 NIDRR-funded Tech Act projects.

There are so many consumer/advocacy groups that it would be impossible to cite them all in this paper. Some of the major ones include: the National Federation of the Blind, American Foundation for the Blind, United Cerebral Palsy, National Council on Independent Living, National Association of the Deaf, Coalition of Citizens with Disabilities, and many, many others.

3. Universal Design and Orphan Products

Two of the most critical issues for AT are those of Universal Design and "Orphan" Products. If we should ever reach the state where the built environment adhered to all principles of Universal Design, in theory AT would not be needed. However, Universal Design is still in its infancy. A companion paper in this volume by Gregg Vanderheiden explores one aspect of Universal Design in the cross-disability access to kiosks, telephones and VCRs. NIDRR funds an RERC concerned with Universal Design and accessibility for the information age [http://trace.wisc.edu/].

With so much attention to the information age, there is also the built environment. The Center for Universal Design is a national research, information, and technical assistance center supported by NIDRR that evaluates, develops, and promotes accessible and universal design in buildings and related products [http://www2.ncsu.edu/ncsu/design/cud].

Traditionally, governments have been concerned with issues of orphan technology. It appears that most of the activities of NIDRR and of the Telematics Applications Programmes have this focus. Another NIDRR-supported RERC on Technology Transfer and Evaluation is working with the small, heterogeneous market for orphan technology [http://cosmos.ot.buffalo.edu/].

4. Implications of the New Paradigm

The USA is currently shifting its perspective towards individuals with disabilities by adopting a "new paradigm" of service and opportunities. Under this new paradigm, the environment of the individual with a disability is seen as the "disabler," and not the person him or herself. The initial paradigm of disability research grew in the field of medicine and was essentially reductive to impairment and condition with an apparent emphasis on sickness and the professional. The new paradigm is more integrative and, while retaining its medical components, is broadened to include many other fields and disciplines. In the new paradigm, there is more of an emphasis on ability of the disabled individual. Success in research, especially medical rehabilitation, has helped to make the new paradigm possible.
The new paradigm is also seen in the revision to the International Classification of Impairments, Disabilities and Handicaps (ICIDH-2) that is now underway, where impairment, activities, and participation are linked [http://www.who.ch/msa/mnh/ems/icidh/icidhtrg/sld001.htm]. The Institute of Medicine Report, cited in the introduction, also notes the importance of the interaction between the individual and the environment.

One way in which the new paradigm is expressed in research is through Participatory Action Research (PAR). This is a key to the future success of AT. Individuals with disabilities, the ultimate consumers of AT, need to be involved in every aspect of the research and development that leads to AT . In PAR individuals with disabilities are involved in setting the research agenda, developing research questions, participating in the research as researchers, advisors, and consultants, testing research ideas, and most importantly, evaluating the results of the research. PAR is an approach, not a methodology. Many NIDRR-supported engineering centers apply PAR. For example, consumers may screen devices submitted by inventors. Consumers and researchers collaborate on projects in consumer engineering laboratories. The need for user involvement in AT research is an opportunity for collaboration among researchers and consumers internationally to explore the impact of consumer involvement on the vitality of the research agenda and on the validity and replication of the research process.

5. Conclusion and Looking to the Future

The EU - US Science and Technology Agreement has now been signed. NIDRR is considering four possible areas that could emerge under this agreement.

5.1 Exchange of scientists, engineers, and developers

This is a straightforward and necessary step that forms the foundation of international collaboration. Relationships between individuals, laboratories, organizations, and companies must be established by personal contact.

5.2 Shared Product Evaluation/Consumer Testing

There have been a number of calls for more activity in this area, however it is clear that more study is needed. Past experiences with joint US - EU cooperation on wheelchair standards is one model that might be built upon.

5.3 Cooperation in PAR

European and United States researchers are engaged in a lively, international debate about disability studies: the debate issue often involves the relationship between the researcher and the user. How can users be better integrated into assistive technology activities? Both Europe and the US need to examine consumer involvement in AT research through the use of exploratory and consensus conferences and studies.

5.4 Joint Research Projects:

After studying what is being done in Europe and the United States in AT, it appears that many research and development efforts are complementary. I propose that we become even more focused and proactive about joint activities in the coming years. Our collaborative efforts and future-oriented thinking are absolutely vital to ensure that our common challenges of international AT in the 21st century can be successfully met.

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