This article is part of the HHCN+ membership
Home care is the most preferred option for patients with progressive diseases such as amyotrophic lateral sclerosis (ALS), but the substantial costs associated with treatment and funding issues can be a barrier to care for these patients.
Home care providers can take a holistic approach to care, diversify their service lines and apply for grants, providing important home services to this patient population while protecting revenue.
“Simply put, ALS patients are the most comfortable at home,” Bill Shields, caregiver at Maxim Healthcare Services, told Home Health Care News. “They are in a situation where they lose so much and are skilled at home nursing, so they can live as close to normal as possible.
Headquartered in Columbia, Maryland, Maxim Healthcare Services provides skilled nursing, personal care, respite care, behavioral health and physical rehabilitation to individuals with chronic and acute illnesses and disabilities. The organization operates 140 locations in over 35 states. Shields has been working as an agent for nearly 25 years, and has been caring for the same patients with ALS for 16 years.
ALS initially affects small muscles, including those used for biting, speaking, and facial movements, and impairs their function. As the disease progresses, degeneration affects the limbs and ultimately affects the respiratory muscles, requiring the use of ventilators. According to the ALS Association, the average survival rate for ALS is 2-3 years.
“ALS is a rather rare disease when you look at it in connection with other progressive neurological diseases,” Professor Heather Young of UC Davis's School of Nursing in Sacramento, California, told Home Health Care News. “There is a lack of understanding (among some providers) regarding physical changes and functional limitations.”
ALS is different in each patient and requires specialized care routes. Patients usually require palliative and primary care services provided by family, facility-based care, or specialized home care. Home care includes treatment, support for daily activities of daily life (ADL), and emotional support.
Benefits and challenges of ALS care at home
ALS home care allows patients to receive care by reducing transitions and changes. The familiar sights and sounds provide comfort, home care is more affordable and less destructive for families.
“Home care is an incredible service to provide the greatest quality of life possible for ALS patients,” Shields said.
The home service required for individuals with ALS depends on the individual and duration of their illness experience, Shields said.
In the early stages of the disease process, individuals often need ADL support, including eating, dressing, bathing, and walking. As ALS progresses, they begin to experience difficulties in swallowing and breathing. Equipment may be required that include gastronomic tubes, tracheostomy, and ventilation agents.
“Most of the time, if they don't have vents, trucks, or G-tubes yet, it's the end,” Shields said. “These can demand strict treatments from loved ones and threaten intimidating treatments. A skilled nurse can provide this care. A home health aide can give family caregivers a break or run errands.”
Home care is the best option for patients, but families can have a hard time raising funds for home care.
Home ALS care is not usually covered by insurance. However, many patients are eligible for long-term care through Medicaid, Medicare, or veteran benefits when serving in the military. If Patieton purchases a policy prior to diagnosis, care is also often subject to a long-term care policy.
However, according to Young, one of the issues with Medicare is that payments are not approved unless individuals have specific needs.
“Medicare covers a lot for people. At ALS, you're quickly qualified for Medicare. This is relatively new,” she said. “But ALS moves very quickly and people know that in two months they will need a wheelchair to control their mouths, but they can't get it until they need it, and by the time it's approved and delivered, it's past the window that requires it.”
Young said he must acknowledge the importance of predicting and approving what lawmakers need before they need it, especially when it comes to reimbursements for Medicaid and Medicare. You must also recognize the increased costs of this professional care and the type of caregiver you need to provide it.
“We can afford the kind of home care people need, and the amount offered through Medicare and Medicaid is limited,” Young said. “It gets complicated at the end of a person's life when they're falling into a family and having swallowing or breathing problems. Finding a home health aide who can manage it can sometimes be challenging, and having a registered nurse at home is even more expensive (manages that care).”
Difficulty in providing care
While there is a potential benefit for home care providers who provide care to patients with ALS, the market is difficult due to significant costs and funding issues.
Providing home care to individuals with ALS includes the costs of caregivers, equipment, medication, treatment, and more. According to the ALS Association, insurance coverage varies widely and the overall cost of care tends to be higher.
The costs associated with home care for individuals with ALS vary widely based on the stage of the disease and the specific needs of each individual. A study published in the American Journal of Managed Care shows that the total cost of home care, including payments to caregivers, is $669,150 over the course of the illness. Additionally, annual medical costs could escalate to $200,000 due to the 24-hour care required.
Additionally, researchers found that, according to a study on medical resource use from Biogen, a Cambridge, Massachusetts-based biotechnology company, the typical time spent focusing on professional and non-professional care can reach up to 130 hours depending on the stage of the illness.
Despite the challenges and uncertainty, a study published by the American Neurological Association shows that home care providers who can effectively manage costs and ensure appropriate funding can still benefit.
The researchers explained that it is essential to negotiate fees with insurance companies, streamline services, coordinate care with other providers and develop efficient care plans to make ALS care profitable. Providers can also explore grant opportunities and other support programs to compensate for refunds while providing additional specialized services, such as respiratory therapy, to direct higher fees.
Hiring a professional caregiver is one way of family-based caregiving institutions that helps provide the best care for ALS patients.
Young proposed that institutions focus on the employment of receptive and empathetic individuals when selecting caregivers for patients with ALS. Future caregivers need to understand that they care about people with complex and evolving needs.
“I want to see healthcare professionals being more proactive and expecting what needs to happen (for the patients),” Young said. “Being an advocate for people with ALS, thinking about what you need to order from them and whether you're going to do it in a timely manner, whether it's effective or whether it's more than someone else being cared for, and whether it's more than someone else being cared for.
