An ALS diagnosis changes life for the whole family. Amyotrophic lateral sclerosis progressively weakens the muscles that control movement, speech, swallowing, and eventually breathing — but it does not have to mean leaving home. With the right in-home support, most people with ALS can remain safely and comfortably in the place they know best.

What Does ALS Home Care Include?

ALS affects everyone differently, so good home care is built around the person, not a checklist. Most families rely on caregivers for some combination of the following:

At Advantage Home Care, this support is provided by trained personal care aides and home health aides, with schedules that can grow from a few hours a day to around-the-clock care.

ALS Home Health Care vs. Personal Home Care

Families searching for “ALS home health care” often mean two different things, and the distinction matters for coverage. Home health care is skilled, medically oriented care — visits from nurses and physical, occupational, or speech therapists, usually ordered by a doctor for a limited number of hours per week, and typically covered by Medicare on an intermittent basis. Personal home care is the long-hours, day-in-day-out support described above — what most ALS families actually need as the disease progresses, and which is generally not covered by Medicare beyond limited visits. In New York it is most often covered through Medicaid. Most families end up combining both.

How Care Needs Change by Stage

Early stage

Support usually starts small: help with fine-motor tasks like buttons and meal prep, driving to appointments, and safety supervision as walking becomes less steady. A few hours of care a day is often enough, and it establishes a relationship with a caregiver before needs grow.

Middle stage

As weakness spreads, most people need hands-on help with transfers, bathing, dressing, and eating. Fall prevention becomes critical. Care hours typically expand, and family caregivers — often a spouse — begin to need regular relief to avoid burnout.

Late stage

With very limited mobility and, in many cases, feeding tubes and breathing support, care becomes continuous. Around-the-clock or split-shift aide coverage keeps the person safe and comfortable at home, working alongside the hospice or palliative team when the family chooses that path.

How Families in New York Pay for ALS Home Care

Medicare

ALS is one of the few conditions with fast-tracked federal benefits: the usual 24-month waiting period for Medicare is waived, so coverage can begin as soon as Social Security Disability benefits do. Medicare covers doctors, equipment, and intermittent skilled home health visits — but not long-hours daily aide care.

Medicaid — the main source of long-hours care

New York Medicaid covers ongoing personal care at home for eligible members, typically through a managed long-term care (MLTC) plan that authorizes weekly aide hours. Many families are surprised to learn they can qualify: New York’s rules for community-based long-term care are more flexible than most people expect. Our team walks families through the whole process — see our guide to getting approved for Medicaid home care.

Veterans benefits

The VA presumes ALS to be a service-connected condition for eligible veterans, which can unlock significant home care and aid-and-attendance benefits. If your loved one served, it is always worth applying.

Private pay

Families who don’t qualify for Medicaid, or who need care while an application is pending, can arrange private pay home care with flexible hourly scheduling.

Why Families Choose Advantage Home Care for ALS

ALS care is not ordinary home care. It requires aides who understand safe transfers with a mechanical lift, feeding precautions, repositioning schedules, and how to communicate with someone whose speech is changing — and it requires consistency, because a rotating cast of unfamiliar caregivers is exhausting for someone with ALS. We prioritize caregiver continuity, train aides for neurological conditions, and our care coordination team helps families manage authorizations, equipment, and changing care plans as the disease progresses. We provide ALS home care services throughout New York City — Brooklyn, Queens, the Bronx, Manhattan, and Staten Island.

Frequently Asked Questions

Does Medicare pay for full-time ALS home care?

No. Medicare covers intermittent skilled home health visits — nursing and therapy — but not ongoing daily personal care. In New York, long-hours aide care is usually funded through Medicaid.

Can home care help someone with ALS stay out of a nursing home?

Yes — that is exactly what it is designed to do. With enough aide hours, safe transfer equipment, and coordination with the medical team, most people with ALS can remain at home through every stage of the disease, including with around-the-clock support later on.

How many hours of home care can someone with ALS receive?

Hours are based on assessed need. Because ALS is progressive and heavily impacts activities of daily living, people with ALS often qualify for substantial hours — including, in later stages, around-the-clock care. Reassessments can increase hours as needs grow.

When should we start home care after an ALS diagnosis?

Earlier than most families think. Starting with a few hours a week builds trust with a caregiver, keeps the home safe, and starts the Medicaid process before care needs become urgent, since approvals take time.