Creating an assistive technology clinic: the experience of the Johns Hopkins AT clinic for patients with ALS

Abstract

For persons with Amyotrophic Lateral Sclerosis (ALS), comprehensive multidisciplinary care can effectively improve overall quality of life from diagnosis to end of life [16]. Considering the rapidly progressive loss in overall function experienced by persons with ALS, it is essential to provide comprehensive multidisciplinary care, including Assistive Technology (AT) services, in an effective and efficient manner. AT is an important adjunctive therapy for people with neurological disability. For people with complex conditions, access to a comprehensive AT clinic can be the best way to access these tools. Unfortunately, few medical centers have invested in AT clinics, and managers may not understand how to go about developing AT resources at their facility. This article chronicles the step-by-step development of The Johns Hopkins Assistive Technology Clinic for persons with ALS. It offers background evidence, the process of program development, and insight into the experience of professional accountability of one occupational therapist turned AT Director. It also details descriptions of the stakeholders and their roles in the development process, funding and ethical considerations, and barriers to implementation. It is hoped that this may provide guidance for teams who may wish to build AT facilities in their own practice settings.