Beyond Disability: Distinguishing Self-Care Dependence from Work Capacity in Neuromuscular Disease

Work participation is a core rehabilitation goal, yet individuals with severe neuromuscular diseases (NMD) often face workforce exclusion due to the misconception that severe physical impairment, or ventilatory dependence, implies unemployability. This review synthesizes data on employment rates, barriers, and facilitators to demonstrate that employment can be fostered through workplace accommodations and technology, sometimes through simple communication adaptations. We explore the roles of assistive technology (AT), accommodations, and ventilatory support, both invasive and noninvasive, on employment outcomes. Our findings underscore the need for early vocational screening and interdisciplinary interventions. By considering how disability frameworks influence expectations regarding work participation, we illustrate how they shape clinical perspectives and participation. This review highlights that severe physical dependence should not be equated with unemployability. Its main contribution is to link a disability-evaluation (medicolegal) perspective with evidence on occupational capacity enabled by noninvasive ventilatory support, and to propose a functional decision framework that operationalizes the distinction between disability for self-care and disability for work. By mapping self-care to the activity domain and work to the participation domain of the International Classification of Functioning, Disability and Health (ICF), this framework offers physiatrists a clinically oriented, participation-centered approach to support work in individuals with NMD.