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Abstract
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In this Family Partnerships essay, we describe the road to world-class Paralympic sports taken by a patient at our regional spina bifida center. Jason's journey redefines differences in ability and provides an alternative to the medical prescription model for obtaining durable medical equipment. It illustrates a shift in the experience of assistive technology (AT) from medically prescribed to community-supported. Jason's journey is but one manifestation of an emerging vision of health as a community outcome, mobility as a fundamental human attribute, and accessibility as a process that everyone experiences.
Taking medicine is fundamentally different from using assistive technology. A wheelchair is much more than a pill. It is an adaptation for mobility, daily activities, and social participation. This aligns with the World Health Organization's International Classification of Functioning, Disability and Health,1 a framework that measures health and disability both at the individual level and as a social construct, in terms of participation. Unfortunately, in our medical system, prescribing a wheelchair typically launches a confusing amount of paperwork, multiple intermediaries, and, eventually, insurance reimbursement. The process can be disheartening, time-consuming, and isolating for patients and families/allies. Health care providers often have no idea if or when an appropriate wheelchair was dispensed. Delays or miscommunications can result in health complications such as pressure sores and missed school days. This situation is both a medical liability and a social injustice.
Equitable access to assistive technology is a human rights issue that impacts people with disabilities across the life course in our community and in communities around the world. The United Nations has recognized explicitly, in the Convention on the Rights of Persons with Disabilities, that focused effort on a global level is required to give all people personal freedom of mobility and other accommodations. The World Health Organization's Global Cooperation on Assistive Technology (GATE) initiative is working on the development of standards, information systems, and workforce training programs to develop user-centered, community-based models for assistive technologies. The GATE initiative's goal is to "improve access to high-quality affordable assistive technology for everyone, everywhere."2 Supply chain disruption due to the coronavirus disease 2019 pandemic and increased risk from weather and political uncertainty are complicating factors. The retreat from globalization further underscores the need for community-based AT solutions...
Language: en |