Health Insurance for People with ALS – Overview

Health insurance usually covers the majority of medical expenses—including equipment—for people who have been diagnosed with ALS. Though the process and paperwork can be confusing, it is well worth the effort to learn about and apply for the benefits you are entitled to receive.

Medicare and Social Security Disability Insurance

Most people living with ALS qualify for Medicare health insurance and Social Security Disability Insurance (SSDI)—regardless of age. You do not have to be 65 or older. Thanks to advocacy efforts by the ALS community, applications from people diagnosed with ALS are now fast-tracked to help you receive benefits as soon as possible.

​Medicare is a national health insurance program for seniors and some disabled people. It covers the bulk of medical and equipment expenses for most people living with ALS.

Social Security Disability Insurance provides monthly income for people who become unable to work due to a disability. The amount you receive each month depends on how much you earned and paid into Social Security over the years.

SSDI and Medicare are two separate programs, but you apply for them together. You only have to apply for SSDI—and if you qualify, you will automatically receive Medicare disability benefits, too.

Medicaid

​Medicaid provides health insurance for low-income adults and children.​ The primary criteria for Medicaid eligibility is financial, including income and assets. Every state’s eligibility formula is different.

If you qualify for both Medicaid and Medicare, Medicare will become your primary insurance and Medicaid will be secondary. If you don’t have Medicare, Medicaid will be your primary insurance.

Private Insurance

If you have to stop working due to ALS, you and your family could lose your discounted employer-based coverage. If you qualify for Medicare, that would become your primary insurance, but it would only cover you, so your family members would need to purchase their own private insurance plan.

If you don’t qualify for Medicare or Medicaid, you would need to apply for a private health plan. Navigating the insurance maze can be challenging, but it is well worth doing your homework and finding the best plan for you.