American Association of Neuromuscular Medicine Release ALS Homecare Guidelines

ROCHESTER, Minnesota—New medical standard guidance from the American Association of Neuromuscular Medicine (AANEM) has provided a list of “medically indicated services and equipment” for people living with amyotrophic lateral sclerosis (ALS).

The document outlines the minimum standards for homecare to support improved outcomes for individuals with ALS. It includes a list of services and equipment considered medically necessary, which may be used by clinicians, payers, home health agencies and ALS advocates for coverage decisions. Although not fully comprehensive, the list provides a foundation for care planning and acknowledges that many patients will require additional services and items depending on individual needs.

“Most persons with ALS remain in their own homes throughout the disease course; only a minority are cared for long term in a medical facility,” AANEM said. “In order to safely remain in the home, most individuals with ALS require homecare and durable medical equipment (DME); however, access to these critically important needs is often challenged by delays and limits coverage provided by the Centers for Medicare & Medicaid Services (CMS) and commercial payers.”

Current United States ALS care guidelines focus on clinic-based multidisciplinary and pharmacological management, and until this point there has not been a U.S. guidance document that expresses what services and equipment are medically indicated for ALS patients in their homes. This guideline was created to address this gap and thereby facilitate the care of ALS patients in their homes.

People with ALS and their caregivers describe the current resources and services that are provided as largely insufficient because the inadequate approach to care and limited access leave their overall needs unmet. Community-based patient organizations attempt to close the gaps in service and add valuable support, but lack the resources to address all the deficits. In addition, access to home health services and DME may be limited by several factors that fall outside the scope of this guidance document, such as geographical inaccessibility, language barriers, financial barriers and a lack of adequate insurance.

Effective care for an individual with ALS-related disability often depends on close collaboration between family and professional caregivers. However, widespread workforce shortages in home health care have resulted in reduced access to professional caregivers who have the knowledge and experience that are required to meet the needs of individuals with this disease. Just-in-time training opportunities to address the specialized needs of persons with ALS—for example, assistance with low-tech and high-tech communication aids—are limited and underutilized by this workforce.

The guidance includes a section on recommended home health services, with general considerations such as performing a functional assessment of the patient to determine current ALS stage (early, middle or late); establishing the patient’s goals of care and priorities; reviewing home health options with the patient; and coordinating communications between homecare teams and the ALS clinic team’s clinicians; anticipating medically necessary homecare services, such as skilled nursing care and home health aides.

The document also made several DME recommendations, including manual and power wheelchairs, lift and transfer devices, home accessibility equipment (such as lifts and modular ramps), bed mobility and equipment to facilitate bathing and using the restroom.

The guidance also recommends equipment such as:

• Cervical spine supports and orthotics to improve neck and limb function
• Equipment to facilitate food preparation and feeding
• Equipment to make electronics such as smartphones and tablets more accessible
• Communications devices 
• Respiratory equipment