How Home-Based Care Providers Navigate Complex ALS Patient Care Landscape 

In-home care can be the most preferred option for patients with progressive diseases such as amyotrophic lateral sclerosis (ALS) – but significant costs associated with treatment and funding issues can be barriers to caring for these patients.

Home health providers can provide critical in-home services for this patient population while protecting their bottom line, however, by adopting a holistic approach to care, diversifying service lines and applying for grants. 

“Simply put, patients with ALS are most comfortable at home,” Bill Shields, a caregiver with Maxim Healthcare Services, told Home Health Care News. “They are in a situation where they have lost so much and skilled nursing in the home allows them to live a life as close to normal as possible, in what I believe to be a healthier, more caring environment.”

Maxim Healthcare Services, headquartered in Columbia, Maryland, provides skilled nursing, personal care, respite care, behavioral health and physical rehabilitation for individuals with chronic and acute illnesses and disabilities. The organization operates 140 locations across more than 35 states. Shields has been with the agency for nearly 25 years and has cared for the same patient with ALS for 16 of those years.

ALS initially affects small muscles, including those used for chewing, speech and facial movements, impairing their function. As the disease progresses, degeneration affects the limbs and, eventually, the respiratory muscles, necessitating the use of a ventilator. The average survival rate for ALS is two to three years, according to the ALS Association.

“ALS is a pretty rare disease when you look at it in relation to other progressive neurological diseases,” Heather Young, professor at the UC Davis School of Nursing in Sacramento, California, told Home Health Care News. “There’s a lack of understanding [among some providers] regarding the physical changes and functional limitations.”

ALS presents itself differently in each patient and requires specialized care pathways. Patients require palliative and primary care services, typically delivered by a family member, facility-based care or professional home care. In-home care can include medical treatment, assistance with activities of daily living (ADLs) and emotional support.

Benefits and challenges of in-home ALS care

In-home care for ALS allows patients to receive care with fewer transitions and changes. Familiar sights and sounds offer comfort, Shields said, and in-home care is more affordable and less disruptive for families. 

“Home health care is a wonderful service for providing ALS patients with as great a quality of life as possible,” Shields said.

In-home services necessary for individuals with ALS will vary based on the individual and the duration of their experience with the disease, Shields said.

Early in the disease process, individuals often require assistance with ADLs, such as eating, dressing, bathing and walking. As ALS progresses, they begin to experience difficulties with swallowing and breathing. Equipment, including gastronomy tubes, tracheostomies and ventilators, may become necessary.

“Most likely, they will end up on a vent, trach and a g-tube if they aren’t already,” Shields said. “These can be demanding and intimidating therapies for their loved ones; a skilled nurse can provide this care for them. A home health aide can give the family caregiver a break to rest or run errands.”

While in-home care can be the best option for patients, families can struggle to finance at-home care.

In-home ALS care is typically not covered by insurance. However, many patients qualify for long-term care through Medicaid, Medicare or veterans’ benefits if they have served in the military. Care is also often covered under a long-term care policy, provided that the patietn purchased the policy before their diagnosis.

However, one of the issues with Medicare, according to Young, is that payment will not be approved unless an individual has a specific need.

“Medicare covers a lot of things for people, and with ALS, you’re eligible right away for Medicare, which is relatively new,” she said. “But ALS moves so rapidly, sometimes people know that in two months they’re going to need a wheelchair with mouth control, but they can’t get it until they need it, and by the time it is approved and delivered, it is past the window of needing it.” 

Young stated that lawmakers must acknowledge the importance of anticipating and approving what people need before they require it, particularly when it comes to Medicaid or Medicare reimbursement. They must also recognize the increasing costs of this specialized care and the type of caregiver necessary to provide it.

“It is hard to afford the kind of home care people need, and the amount provided through Medicare and Medicaid is limited,” Young said. “It falls to the families and becomes complex at the end of the person’s life when they’re having swallowing and breathing issues. Finding home health aides who can manage that is sometimes challenging, and it is even more costly to have a registered nurse in the house [managing that care].”

Difficulties providing care

While there is profit potential for in-home care providers offering care for ALS patients, the market is challenging due to significant costs and funding issues.

Providing in-home care for individuals with ALS involves expenses such as caregivers, equipment, medications and therapies. Insurance coverage can vary widely, and the overall cost of care tends to be high, according to the ALS Association.

The costs associated with in-home care for individuals with ALS can vary significantly based on the stage of the disease and the specific needs of each individual. According to a study published in the American Journal of Managed Care, the total in-home care costs, which include payments to caregivers, can amount to $669,150 over the course of the disease. Additionally, annual medical expenses can escalate to $200,000 as 24-hour care becomes necessary.

Furthermore, researchers found that the typical hours dedicated to professional and non-professional caregiving can reach up to 130 hours per week, depending on the stage of the disease, according to a study on health care resource use by researchers at Biogen, a biotechnology company based in Cambridge, Massachusetts.

Despite the challenges and uncertainties, in-home care providers who can effectively manage costs and secure adequate funding may still see a profit, according to a study published by the American Academy of Neurology.

Researchers explained that to make ALS care profitable, it’s imperative to negotiate rates with insurance companies, streamline services and coordinate care with other providers to develop efficient care plans. Providers may also want to explore grant opportunities and other assistance programs to supplement reimbursements while offering additional specialized services, such as respiratory therapy, to command higher rates.

Hiring specialized caregivers is one way home-based care agencies can help provide the best care for patients with ALS.

Young suggested that agencies focus on hiring receptive and empathetic individuals when selecting caregivers for patients with ALS. Prospective caregivers should understand that they are caring for someone with complex and evolving needs, which may require ongoing education regarding ALS to develop the necessary skills to deliver specialized care.

“I’d love to see health care professionals being more proactive and anticipating what needs to happen [for their patients],” Young said. “Being an advocate for the person with ALS, whether you’re thinking about what’s needed to be ordered for them and doing it in a timely way so that it happens at a time that’s effective or considering providing care as a unit because it is more than just the person receiving care; it is their entire family who needs support.”