Over the course of the last few years, ALS Golden West has collaborated with a group of neurologists and researchers from around the country, including people with ALS and their caregivers, to launch an ongoing study that seeks to establish medical standards and guidelines for in-home care for ALS. Most people with ALS live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes. Currently, medical standards for prescribing in-home care for those with ALS do not exist, which means that most often, this desperately needed skilled home care is not covered by health care plans.
This article, published by the National Library of Medicine, is an important early step in the process, as we aim to develop an expert consensus-based ALS home health medical standard guidance document, in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine. ALS Golden West continues to participate as an advisory committee member in the study, and we will keep our ALS community posted as this work develops.