SSDI and Medicare for ALS

Most people diagnosed with ALS qualify for SSDI and Medicare—regardless of age. The determining factor will be your work history. You do not have to be 65 to qualify!

If you have worked at least five of the last ten years and have paid taxes for a total of 40 quarters (ten years) or more, you should qualify. There are a number of variables, such as when you worked, how much you worked, and at what age you were diagnosed.

To find out if you qualify, visit the Social Security website or call 1-800-772-1213.

​Note: If you paid into Medicare in the past—but not in the last ten years—you may be eligible for Medicare Part A if you pay a monthly premium.

You can apply for Social Security Disability Insurance online, in person, or over the phone. You can schedule an appointment at your local Social Security Administration office or call 1-800-772-1213 between 7:00 am and 7:00 pm (Eastern Time) Monday through Friday.

If you have questions about how to proceed, ​The ALS Medicare Resource Line provides free individualized case management assistance for people living with ALS, their family members, and caregivers. Their Medicare experts can help you navigate eligibility and enrollment over the phone. You can also contact the social worker at your ALS clinic or local ALS organization for assistance.

Note: If you were 65 or older when diagnosed, you cannot receive monthly disability payments on top of your monthly social security payments.

For years, the standard 24-month waiting period had been reduced to five months for people living with ALS. Thanks to advocacy efforts by the ALS community, Congress passed a law in December 2020 that waived the five-month waiting period altogether. This means that you can begin receiving your benefits soon. Your application will be fast-tracked, so you should know within a few weeks if you qualify.

Medicare will cover many of your expenses, but you will still need to pay out of pocket for monthly premiums, deductibles, and co-pays. Medicare Part B covers 80% of services and equipment that are considered “medically necessary.” The remaining 20% will need to be covered by Medicaid, supplemental insurance (see below), private insurance, or direct payment from you.

If you have limited income and resources, your state may be able to help you pay some or all of your Medicare premiums, deductibles, and coinsurance. Learn more about Medicare Savings Programs.

Medicare has four main parts:

Part A covers hospital insurance, inpatient hospital stays, home health services, care in a skilled nursing facility, and hospice care. Most people receive Part A automatically and don't pay a premium. Learn more.

Part B covers durable medical equipment (DME), certain doctors' services, physical and occupational therapy, outpatient care, medical supplies, preventive services, and some home health care. Each year, the Medicare Part B premium, deductible, and coinsurance rates are determined according to provisions of the Social Security Act. 

People living with ALS often use the services covered by Part B. If you qualify for SSDI, you will get Part B unless you opt out. Most people pay the standard Part B monthly premium, which is $174.70 for 2024.

Medicare Part B will cover 80% of your “medically necessary” services and durable medical equipment after you meet the annual deductible, which is $240 in 2024. Learn more.

Part C (Medicare Advantage Plans) covers vision, hearing, dental, health and wellness programs, and emergency and urgent care. If you want Part C, you will need to enroll and pay separately for it. The cost will depend on your provider, plan, and other factors.

If you enroll in Medicare Part C, a private healthcare company will manage your benefits, which will include Parts A and B, often Part D, and additional coverage areas such as vision and dental.

You can choose an HMO or PPO. Check to make sure the plan will cover visits to your preferred doctors, because not all doctors will be included. Not all plans are available in every county or state. There is an annual enrollment period once a year. Learn more.

​Part D is optional and adds prescription drugs to Parts A and B. Some people will pay a premium for Part D. Others will not. Part D plans are offered by insurance companies and other private companies approved by Medicare. ​Prices will vary by plan and company. Learn more.

If you have coverage through your current or former employer, you will need to understand how it works with Medicare before making any decisions. Learn more on the Medicare website.

Visit the State Health Insurance Counseling Program (SHIP) website or call 1-800-677-1116 to talk with someone about coverage details in your state.

If you do not have existing employer or union insurance to help cover the out-of-pocket gaps of Medicare—like copayments, coinsurance, and deductibles—you will want to consider purchasing supplemental insurance (also known as a Medigap policy).

Supplemental insurance is sold by private companies. It is different from Parts A, B, C, and D. You cannot purchase it unless you already have Parts A and B. There will be a monthly premium (in addition to the Part B premium). There are many different plans and costs can vary widely.

If you are over 65, you have the right to purchase supplemental insurance no matter where you live. It is best to purchase it during your Medigap Open Enrollment Period, which is the six-month period that begins on the first day of the month that you turn age 65 and are enrolled in Medicare Part B. During this time, you are entitled to join any Medigap plan that is available in your state, regardless of health issues.

If you are under 65 and have disability benefits through Medicare, your ability to purchase supplemental insurance will depend on the law in your state. Some states require insurance companies to offer supplemental plans to disabled Medicare recipients. Others do not. Find out whether supplemental plans are offered in your state. If you don’t qualify for a supplemental plan in your state, then you may want to look into a Medicare Advantage Plan or Medicaid in your state.

Visit the Medicare website for more details on supplemental insurance, including the best time to buy and how to find a policy.