Assistive/rehabilitation technology, disability, and service delivery models
Meera Adya, Deepti Samant, Marcia J. Scherer, Mary Killeen & Michael W. Morris Cognitive Processing International Quarterly of Cognitive Science ISSN 1612-4782 Volume 13 Supplement 1 Cogn Process (2012) 13:75-78 DOI 10.1007/s10339-012-0466-8
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Author's personal copy Cogn Process (2012) 13 (Suppl 1):S75–S78 DOI 10.1007/s10339-012-0466-8
SHORT REPORT
Assistive/rehabilitation technology, disability, and service delivery models Meera Adya • Deepti Samant • Marcia J. Scherer Mary Killeen • Michael W. Morris
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Published online: 22 July 2012 Ó Marta Olivetti Belardinelli and Springer-Verlag 2012
Abstract The United Nation’s Millennium Development Goals do not explicitly articulate a focus on disability; similar failures in the past resulted in research, policy, and practice that are not generalizable and did not meet the needs of persons with disabilities since they were developed for an ‘‘average’’ population. Academics and professionals in health and other disciplines should have a knowledge base in evidence-based practices that improve well-being and participation of people with disabilities through effective service delivery of assistive technology. Grounded by a theoretical framework that incorporates a multivariate perspective of disability that is acknowledged in the convention on the rights of persons with disabilities and the World Health Organization’s International Classification of Functioning, Disability and Health, we present a review of models of assistive technology service delivery and call for future syntheses of the fragmented evidence base that would permit a comparative effectiveness approach to evaluation. Keywords Assistive technology devices Assistive technology services Disability Rehabilitation Community-based rehabilitation Universal design
M. Adya D. Samant M. J. Scherer M. Killeen M. W. Morris Burton Blatt Institute, Syracuse University, 900 S. Crouse Avenue Crouse-Hinds Hall, Suite 300, Syracuse, New York 13244-2130, USA e-mail:
[email protected] URL: BBI.syr.edu M. J. Scherer (&) Institute for Matching Person & Technology, Webster, NY, USA e-mail:
[email protected]
The United Nations (UN) estimates there are 650 million people with disabilities in the world, and these numbers will grow due to population increases and prolonged life spans (World Health Organization and The World Bank 2008). This figure includes individuals with difficulties in cognitive processing and spatial cognition due to, for example, blindness, stroke, and traumatic brain injury. Embodied cognition considers cognitive processes to be grounded in the body’s interactions with the world. In a reconstitutive, dialectical process, the body of an individual with a disability and its interactions with the world can be greatly impacted by the use of assistive technologies (AT) to enhance functioning in activities of daily living, control of the environment, recreation, mobility, and employmentrelated skills (de Jonge et al. 2007). Despite national and international initiatives promoting research and development, financing, and distribution programs, people with disabilities still experience limited access to, and awareness and acquisition of, appropriate AT products. The support of technology use affirms the human rights model of disability as represented in, for example, the Americans with Disabilities Act (1990), the WHO’s International Classification of Disability, Function, and Health (2001), and the Convention on the Rights of Persons with Disabilities (2008). Views of the quality of life of individuals with disabilities are shaped by the specifics of other’s own embodiment as well personal and cultural assumptions of what is necessary for a good quality of life. As shown in Fig. 1, people may experience a variety of barriers to full participation in society. AT, as a mediator between people and their environment and participation barriers, has been innovated and transferred to relevant markets in a variety of ways. The right side of Fig. 1 shows the continuum of positive outcomes that may derive from transferring AT. This
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Fig. 1 Assistive technology and knowledge translation
continuum represents a continuum of positive outcomes, as a knowledge path that leads from first awareness of AT (Knowing), to AT acquisition and use, and to increased participation in the domains of choice (Doing). Effective AT service delivery models should encompass a focus on knowledge translation (KT) to ensure the model’s success. When individuals are not aware of AT or different AT alternatives, they cannot select the most appropriate option; with AT abandonment rates as high as 30 %, it is critical that people receive technology that best matches their needs and ongoing training to prevent abandonment (Scherer 2002). The current literature demonstrates that the appropriate strategy for the design and distribution of AT depends on factors such as the availability of personnel, raw materials, and device parts; the interaction of all these factors can complicate AT service delivery models. For example, based on their experience in setting up an AT service delivery system in Thailand, Phantachat and Parnes (2007) assert that its establishment requires the interaction of different government agencies, such as health, labor, education, and social welfare, while simultaneously involving disabled peoples’ organizations (DPOs) and NGOs. This complex and multivariate problem has spawned several different solutions or ‘‘models’’ of service delivery, each of which is suited to particular needs, environments, or types of AT. Healthcare workers and policymakers need a knowledge base in the extant ways that AT may be provided to end users to improve their well-being and participation. As noted, the issue is multivariate and complex, and a variety of models encourage innovation and service delivery. In this article, we capture the extensive variety of models in six overarching categories, but recognize that each of these categories is general and comprised of many more subcategories of models. In addition, these categories are not perfectly discrete, but rather, some are hybridized or ‘‘multimodal’’ and overlap. Nevertheless, for the purpose of this article, we believe that six overarching categories are an important way to conceptualize the universe of transferring AT to persons with disabilities.
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Assistive and rehabilitation technology service delivery models Charity-based models Charity-based programs have been used for decades to provide individuals with material products that they could not access due to socioeconomic and environmental conditions. Charities engage in different activities such as developing low-cost prototypes available for free (Kurzman 2004); mass distribution of different types of AT (Bloom 2007; Howitt 2006); fundraising to finance the delivery of AT (AbilityNet 2006); and refurbishing and recycling old AT devices (Kurzman 2004; Howitt 2006). Although mass distributions of AT can be helpful, such as when a conflict or disaster results in a large number of acquired disabilities (Pearlman et al. 2006), they often involve products designed with a one-size-fits-all approach that cannot be customized to the needs of consumers and their environments or have low-quality designs that can lead to secondary injuries and wounds (Pearlman et al. 2006; Constantine et al. 2005). For example, low-cost wheelchairs designed through the charity model often use cheap materials such as plastic (Kurzman 2004) despite the fact that uncushioned rigid seating arrangements on wheelchairs seriously increases the risk for pressure sores and skin damage (Criddle et al. 2008). Community-based rehabilitation (CBR) models CBR was conceptualized and promoted by the WHO and related UN agencies in the early 1980s as a means of providing services to people with disabilities in developing countries who had no access to quality rehabilitative facilities, physicians, and other qualified personnel (The World Bank 2009). The original rationale behind CBR was to circumvent the need for expensive institutional care and a lack of government support by providing cost-effective rehabilitation services to people with disabilities within their own homes and communities. In 2004, the WHO, the International Labor Organization (ILO), and the United
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Nations Educational, Scientific and Cultural Organization (UNESCO) released their joint position on CBR as a method of promoting social inclusion, equalization of opportunities, and rehabilitation services through the joint efforts of ‘‘people with disabilities themselves, their families, organizations and communities, and the relevant governmental and non-governmental health, education, vocational, social and other services’’ (World Health Organization 2004 p. 2). As CBR works on the principle of finding solutions through locally available resources, most AT delivered through CBR programs is designed to be affordable, made with locally available materials, and appropriate to the environment of the consumer. Individual empowerment models In individual empowerment models, consumers ‘‘partner’’ with providers in product evaluation and selection as professionals strive to individualize services, help people achieve their self-determined goals, and ensure people are included in all aspects of community life. To achieve a good match of person and technology and improved rates of optimal assistive technology use, it is important that the potential technology user be paired with a well-informed provider and that a comprehensive assessment of the individual’s needs and priorities is conducted (Federici and Scherer 2012; Scherer 2005). Entrepreneurial models Entrepreneurial models promote the availability of AT through commercialization, and this transfer of technology can occur using either top-down or bottom-up approaches. In the top-down entrepreneurial model, the technology solution is brought into the local market by a foreign or external entity (Parker 2001). Top-down distribution of AT can also include local franchising and adaptation to the local culture. Whirlwind Wheelchair International (2009) is an example of a top-down approach toward bringing needed AT into resource-limited environments (RLEs). WWI works on the distribution of appropriate wheelchairs in developing countries by setting up local workshops and building local capacity to build and market high-quality wheelchairs adapted to the user, the local terrain, and the environmental conditions. In contrast, in the bottom-up model, local entrepreneurs identify the need for AT, design solutions, and find resources for financial and other supports needed for commercialization. Globalization model Globalization models refer to the expansion of multinational and international companies into new markets in
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RLEs to create new supply chains for the delivery of technology solutions which may or may not be adapted to local needs. Manufacturing in most globalization models is done in-country on a large scale. Solutions can be designed in collaboration with international, national, and local designers. Pearlman and colleagues (2006) observe that this model provides opportunity for scalability and maximum sustainability. It has to be noted that this model is mainly suited for one-size-fits-all solutions, even when they are adapted to local context and needs. Universal design models The universal design (UD) approach is based on the understanding that designing products to match a mythical average of human abilities and conditions are in conflict with the fact that all human users are diverse and experience different personal and environmental circumstances (Moore 2001; Story et al. 1998). The Center for Universal Design (Story et al. 1998) defines UD as ‘‘the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.’’ Inaccessible mainstream products and services designed with a focus on a narrow subset of human functioning, such as information and communication technologies (ICT), medical equipment, and physical infrastructure, can impose significant barriers on people with disabilities and people who are aging. Universally designed public use products and infrastructure are also necessary to ensure that people with disabilities have equal access to all activities irrespective of the existence of AT since many times individuals cannot use mainstream technologies that do not match their AT devices. UD can inform the development of improved user interface technologies in electronic devices such as computers and cell phones. This can eliminate the user’s need to purchase both mainstream ICT products and suitable AT, thereby decreasing user costs and enabling usage (Scherer 2012).
Conclusion Service providers and policymakers need to understand the models that exist, which ones work in which conditions, and how to implement and fund programs and evaluations that will consistently, empirically grow an evidence base upon which future health care, policy decisions, and resource allocations can be made. The current literature and state of the art of our knowledge is clear about one important aspect that should guide all policy and practice: ‘‘Disability’’ is a gap between a person and his or her environment. Assistive technology bridges and/or eliminates this gap.
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We have provided a brief overview of key models of service delivery for ensuring that effective and appropriately matched AT reaches people with disabilities. A deeper examination of the current literature, however, would reflect a fragmented evidence base regarding the efficacy and success of these various models, and as such, it merits synthesis. Constructing a comprehensive framework for similarly evaluating all models of AT service delivery will enable a comparative effectiveness approach that allows decision-makers to choose the best solution for the circumstances. It is not the case that such a framework can only be implemented in a forward looking manner with new evaluations and new data collection. We believe it would be valuable to gather and synthesize the current evidence base according to a common framework. Conflict of interest This supplement was not sponsored by outside commercial interests. It was funded entirely by ECONA, Via dei Marsi, 78, 00185 Roma, Italy.
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