ABSTRACT Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease associated with escalating disability and complex care needs. Although most individuals with ALS reside at home, existing US guidelines primarily address clinic‐based care and provide limited direction on medically necessary home health services and durable medical equipment (DME). The objective of this task force was to develop expert consensus guidance defining minimum medical standards for home health services and DME for individuals with ALS, with the goal of improving patient outcomes, safety, and quality of life. This guideline was developed by a multidisciplinary task force convened by the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM). The process incorporated a scoping literature review, stakeholder engagement (patients, caregivers, and advocacy groups), and iterative expert consensus. Recommendations were informed by clinical expertise, patient‐centered priorities, and existing policy frameworks. This guideline outlines stage‐responsive home healthcare recommendations spanning nursing, home health aides, physical and occupational therapy, speech‐language pathology, respiratory therapy, nutritional support, and social work. It emphasizes proactive, anticipatory care aligned with the predictable trajectory of ALS, rather than being reactive based on functional decline. The document defines medically necessary DME across domains, including mobility, communication, respiratory support, and activities of daily living, advocating for timely access independent of restrictive payer criteria. Key principles include coordinated interdisciplinary care, continuous reassessment, caregiver support, and integration of palliative care. These recommendations establish a foundational standard for ALS home‐based care in the United States. Adoption may reduce delays, prevent complications, and support sustained independence and dignity for individuals with ALS.
AANEM (Tue,) studied this question.