New medical standard guidance from the American Association of Neuromuscular Medicine (AANEM) has provided an extensive list of “medically indicated services and equipment” for people living with amyotrophic lateral sclerosis (ALS).
The list “builds on a scoping literature review published in Muscle & Nerve and on patient and professional stakeholder interviews,” AANEM added in publishing the guidance in May. “This document outlines the minimum standards for home care 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.”
For dignity and life
AANEM noted that such services and technology are needed “to maintain life, independence and dignity” as ALS progresses and noted, “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. In order to safely remain in the home, most individuals with ALS require home care 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.”
Because the median survival from an ALS patient’s diagnosis to death is just 14 to 17 months, “the rate of progression is generally rapid and often too fast for the current reactive U.S. payer system to cover equipment and services in an effective manner,” AANEM noted. The organization recommended that patients with ALS be evaluated quarterly, but “Current payer coverage practices allow for provision of equipment and services only after function has been lost instead of being based on anticipated functional decline. This, combined with processing times that are often months long, frequently results in delivery of equipment and services that no longer match the constantly evolving needs of the patient.”
The guidance includes a section on recommended home health services, with general considerations such as performing a comprehensive functional assessment of the patient to determine current ALS stage (early, middle or late); establishing the patient’s goals of care and priorities; understanding caregiver needs and preferences; reviewing home health options with the patient; planning in advance for palliative and hospice care; coordinating communications between home care teams and the ALS clinic team’s clinicians; anticipating medically necessary home care services, such as skilled nursing care and home health aides; and evaluating for and setting up physical and occupational therapy, speech-language evauations ; respiratory therapy; nutritional support services and social services as indicated.
The equipment that can make a difference
DME recommendations include manual and power wheelchairs, appropriate seating, and alternative driving controls; lift and transfer devices; home accessibility equipment, such as lifts and modular ramps; adapted automotive vehicles; bed mobility, such as positioning equipment, hospital bed and specialty mattresses; and equipment to facilitate bathing, grooming, dressing and toileting, such as tilt-in-space shower chairs, rolling commodes and adaptive clothing.
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; and respiratory equipment, including ventilators, backup respiratory assist devices and airway clearance devices.
“Persons 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 leaves their overall needs unmet,” guidance authors said. “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.”
The authors also emphasized the need for healthcare to keep pace with the rapidly changing needs of patients living with ALS.
“The progressive nature of ALS determines future loss of function,” they said, “and matching the equipment and services with what the patient needs as symptoms are developing, rather than after they have developed, would serve them better.”
