ALS and Medicare
If you’ve been diagnosed with amyotrophic lateral sclerosis (ALS), you can qualify for Social Security disability benefits and Medicare. Medicare covers many services you may need, including durable medical equipment, home health care and hospice.
Qualifying for Medicare with ALS
Many people diagnosed with amyotrophic lateral sclerosis — also known as ALS or Lou Gehrig’s disease — can qualify for Medicare regardless of age.
To enroll in Medicare, you must first be approved for Social Security Disability Insurance, or SSDI. Qualifying for SSDI depends on your work history.
You typically qualify for disability benefits when you’ve worked at least five of the last 10 years and have paid taxes for a total of 10 years or more.
You are automatically enrolled in Medicare as soon as you start to receive disability benefits.
Most SSDI applicants must undergo a five-month waiting period before benefits begin.
However, in December 2020, a new law exempted ALS patients from this waiting period, so your disability benefits should begin shortly after your application is approved.
Home Health Care Services for ALS
You will likely need home health care services as your ALS condition progresses.
Medicare coverage includes several at-home benefits at no cost for those who qualify.
Typically, a home health care agency coordinates the services your doctor orders for you.
- Be under the care of a doctor
- Have a doctor-created plan of care
- Be homebound
- Have a doctor certify that you require intermittent occupational therapy, physical therapy, skilled nursing care or speech language therapy
- Receive care from a Medicare-certified home health care agency
Medicare covers intermittent skilled nursing care — not around-the-clock care.
This means the services you receive must be provided fewer than seven days a week. You may also receive daily care as long as it doesn’t exceed eight hours each day for up to 21 days.
- Skilled Nursing Services
- Home health nurses provide direct care and teach you and your family about your care. They can give IV drugs and certain injections, administer tube feedings, change dressing and provide other services typically performed by a nurse. You can receive up to 28 hours of skilled nursing care at home each week. In some special situations, you may qualify for up to 35 hours a week.
- Assistive or Personal Care Services
- A home health aide administers these services, which can include tasks of daily living, such as dressing and bathing. Medicare covers these services only if you’re also receiving skilled nursing care. You can receive home health aide services up to 28 hours a week or, in some situations, 35 hours a week.
- Therapy Services
- Medicare covers physical therapy, occupational therapy and speech-language pathology services if you qualify under a program intended to help you maintain your current condition or prevent your condition from getting worse.
- Medical Social Services
- These services include counseling or assistance with finding resources in your community and are covered by Medicare when they are ordered by your doctor.
You pay nothing for home health care services so long as you meet eligibility criteria and your services are provided by a Medicare-approved home health agency.
You also won’t owe anything for home health care if you’re enrolled in a Medicare Advantage plan.
You can use the online Home Health Compare tool to find Medicare-certified home health agencies in your area. The tool provides information about the types of services each agency offers, as well as details about the quality of care they provide.
Durable Medical Equipment for Managing ALS
Durable medical equipment, or DME, are items you can use at home to improve your quality of life and extend your independence.
Medicare covers numerous types of DME. The items you need, and when you need them, will depend on your ALS symptoms and progression.
- Hospital bed
- Patient lift transfer devices
- Commode chair
- Foot and ankle brace
- Back brace
- Suction machine
- Bilevel (BiPAP) sleep therapy machine
- Speech generating devices
- Cough assist machines
- Portable ventilator
Medicare pays 80 percent of the approved cost for each item. You are responsible for the remaining 20 percent.
You may owe less if you have supplement insurance, such as Medicaid or a Medigap policy.
Medicare covers DME only if you get it from a supplier enrolled in Medicare.
To receive your DME, a multistep process must be followed.
- Your doctor or health care professional prescribes each piece of equipment you need by filling out an order.
- Your doctor or health care professional then orders the DME from a local supplier.
- The DME supplier collects payment from Medicare and any supplement insurance before contacting you about costs.
- Once the supplier receives your equipment, they schedule a time to deliver it to your home.
- A physical or occupational therapist contacts you to schedule an at-home visit after your DME arrives. The therapist will show you how to use the equipment.
If you have trouble paying for DME, many local ALS nonprofits and clinics offer equipment for free through loan programs.
If they have them on hand, these organizations can lend small items, such as pivot discs, as well as larger items, including motorized wheelchairs for as long as you need them.
You can find your local ALS Association chapter by using this online tool.
What Is ALS?
ALS is a progressive neurological disease that destroys motor neurons. It causes people to lose control of their limbs, their speech and, ultimately, their ability to breathe.
There is no cure for ALS and no effective treatment to halt symptoms.
ALS symptoms can vary from person to person, depending on which neurons are affected.
- Trouble walking or performing normal daily activities
- Tripping and falling
- Weakness in your legs, feet or ankles
- Cognitive and behavioral changes
- Poor motor skills in your hands
- Slurred speech or difficulty swallowing
- Muscle cramps and twitching in your arms, shoulders and tongue
- Uncontrollable crying, laughing or yawning
Doctors usually don’t know why ALS occurs. It’s estimated that about 10 percent of ALS cases are inherited.
The risk of developing ALS increases with age. According to Mayo Clinic, the disease is most common for people between the ages of 40 and the mid-60s.
Treatments can’t reverse ALS, but they can slow the progression of symptoms and prevent complications.
Your doctor may prescribe certain medications — such as Rilutek (riluzole) or Radicava (edaravone) to slow the progression of ALS. Doctors can also prescribe medications to manage symptoms of ALS, including muscle cramps, stiffness and excess saliva.
You may require a brace, walker or wheelchair. Eventually, you may need assistance breathing with either noninvasive ventilation or mechanical ventilation.
You may also benefit from physical, occupational and speech therapy to maintain your muscle strength, range of motion and ability to communicate for as long as possible.
14 Cited Research Articles
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- Social Security Administration. (2021). Number Of Credits Needed For Disability Benefits. Retrieved from https://www.ssa.gov/benefits/retirement/planner/credits.html#h3
- Centers for Medicare & Medicaid Services. (2020, August). Medicare Coverage of Durable Medical Equipment & Other Devices. Retrieved from https://www.medicare.gov/Pubs/pdf/11045-medicare-coverage-of-dme.pdf
- ALS Association. (2020, June 10). FYI: Hospice. Retrieved from https://www.als.org/navigating-als/resources/fyi-hospice
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- National Institute of Neurological Disorders. (2013, June). Amyotrophic Lateral Sclerosis (ALS) Fact Sheet. Retrieved from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet#Treatment
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- Medicare.gov. (n.d.). Hospice coverage. Retrieved from https://www.medicare.gov/coverage/hospice-care
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