Medicare, Medicaid, & Private/Employer Insurance

Once you’ve been diagnosed with ALS, the real work begins. The costs of medical care and assistive technology can be staggering, even if you have health insurance. If you don’t have health insurance, though, it can be difficult to know where to start.

Thanks in large part to our advocacy, people who have been diagnosed with ALS and apply for Social Security Disability Insurance are immediately eligible for Medicare, which can substantially offset the cost of quality medical care.

It isn’t easy to navigate the Medicare system, but it’s important that people living with ALS start this process as early as possible to minimize the impact the disease can have on their finances.

To sign up for Medicare, a patient must first qualify for Social Security Disability Insurance (SSDI) and receive benefits.

The standard 24-month waiting period is waived for people diagnosed with ALS because the disease progresses so quickly.

As soon as you receive SSDI benefits, you’ll receive Medicare coverage.

People living with ALS can choose original Medicare, (Medicare Part A and Medicare Part B), or Medicare Advantage Plans (Medicare Part C). Part C plans are offered by private companies and provide similar benefits to government-administered plans.

Social Security Disability Insurance (SSDI) is a program that 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 have earned and paid into Social Security over the years.

​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.

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.

Am I eligible?

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.

How do I apply?

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.
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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 ALS United Rocky Mountain 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.

How soon can I get benefits?

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.

How much will I have to pay out of pocket?

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.

What are the different parts of Medicare?

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. 

​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. 

What if I already have private health insurance?

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

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.

What if I still want additional coverage?

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.

Additional Resources

​The ALS Medicare Resource Line provides free individualized case management assistance for people living with ALS, their family members, and their caregivers. Medicare experts can help you navigate eligibility and enrollment over the phone.​​
Medicare Rights Center is a nonprofit customer service organization dedicated to helping seniors and people with disabilities navigate the Medicare system. Call 1-800-333-4114.
A.C.C.E.S.S. Program is a free service for people living with ALS and other chronic conditions that can help you navigate not only Medicare but also other social and economic challenges that you may face. Call 1-888-700-7010.

© Your ALS Guide 2025-2027

During the Medicare open enrollment period, those currently enrolled in a Medicare prescription drug plan have the option to switch plans or remain in their current plan.

Those who didn’t enroll in the benefit when they first became eligible for Medicare also may enroll at this time, although these individuals may be subject to a late enrollment penalty. A benefits counselor, such as those at Area Agencies on Aging, may be able to help you determine which plan is best for you.

It’s important that people living with ALS who have enrolled in the Medicare drug benefit take the time to review their prescription drug plan options, even if they’re satisfied with their current plan. Many plans have made important changes to their benefits for the upcoming year, including changes to monthly premiums, the drugs that are covered or included on the plan formulary, the costs of drugs, coverage in the “donut hole” (coverage gap), and other policies that impact access to particular drugs.

If you don’t review your policy, you may end up paying more than you have to for crucial medications.

In addition, new plans with different options are now available in many areas of the country. Therefore, your current plan may or may not be the best plan for you, so we encourage you to take the time to review your options and find the plan in your area that best meets your needs. And as you review your plan options, we strongly recommend that you evaluate plans considering a range of factors, such as coverage policies and your drug needs, in addition to monthly premiums

Health insurance can be complicated, and it’s important to determine what is covered under your plan and to ensure you receive all the benefits you are due.

If you have specific questions about your coverage, contact your insurance company directly. Make notes of when you contact them, the name of the representative you talk with, and the answers they give you.

Ask if your policy allows for a case manager who can be helpful in getting you the answers you need, and in dealing with other people within the insurance company on your behalf.

Some things you need to know about your health insurance policy:

• The amount of the annual deductible.
• Whether there’s an out-of-pocket expense limit, and how your coverage changes if you reach that limit.
• Whether you need pre-authorization for any services.
• Whether the plan covers durable medical equipment (DME), such as ventilators or wheelchairs.
• Type of prescription drug coverage.
• Whether your plan includes home health coverage, including a home health aide.
• Whether your plan covers hospice care.

Medicaid is a health insurance program primarily for low-income families and individuals that provides free or low-cost coverage.

​Medicaid is jointly funded by the federal government and state governments. States must adhere to broad federal requirements, but they develop and manage their own unique programs. Eligibility, benefits, and other details vary greatly by state.

Do I qualify?

Eligibility requirements are different for every state. You do need to be a U.S. citizen (or qualifying noncitizen) and resident of the state where you apply.

Some states have expanded Medicaid to cover all adults below a certain income level. If your state does not have expanded Medicaid, eligibility will depend on a variety of factors, such as your income, household size, disability, and age.

In addition to your income level, state formulas will take your assets into account, including retirement plans like 401(k) holdings. If you have stopped working but have significant assets, you may not qualify.

If you do not qualify for Medicaid at first but then your financial situation changes, you can always reapply.

Find out if you qualify for Medicaid in your state.

Medically Needy Programs

Some states have “medically needy programs” for people with significant health expenses who earn too much to qualify for Medicaid. If you spend more out-of-pocket on health expenses than the gap between your income and Medicaid eligibility, you may qualify. In this case, Medicaid can help cover your additional out-of-pocket expenses. This is called “spending down.”

For example, if your state’s income eligibility is $30,000 but you make $40,000 and spend $15,000 out of pocket on medical expenses, then you can qualify because you have paid more than the $10,000 gap. In this case, Medicaid would help you cover the remaining $5,000.

What is covered?

All state Medicaid programs are required to provide certain mandatory benefits, such as inpatient and outpatient hospital services, home health services, physician services, durable medical equipment, and transportation to medical care.

Other benefits are considered optional, which means that some states cover them and others don’t. Optional services include physical therapy, occupational therapy, speech therapy, respiratory care, dental services, prescription drug coverage, and hospice.

How do I get benefits?

You need to apply through your state’s health insurance marketplace or Medicaid agency. Every state’s Medicaid program has a different name. For example, California’s program is called Medi-Cal.

Learn more about Medicaid, including how to apply and contact information for every state. Be sure to plan for the waiting period between applying and receiving benefits.

How does Medicaid relate to Medicare?

If you qualify for both Medicaid and Medicare, then Medicare will become your primary insurance, and Medicaid will be secondary (covering the remaining 20% of expenses that Medicare does not cover). Medicaid may also cover some costs that Medicare won’t, such as a piece of durable medical equipment.

If you don’t have Medicare, Medicaid will be your primary insurance.

How much will I have to pay?

Medicaid will help save you money, though you may need to pay for some things out of pocket, such as copayments, coinsurance, deductibles, and other charges. There are limits to out-of-pocket costs. Again, it will depend on your state’s program. Some states charge premiums, and others don’t. ​

What if I still have questions?

Contact ALS United Rocky Mountain or the social worker at your ALS clinic to get their thoughts and advice on your specific situation. They will know your state’s Medicaid program and how it has benefited other ALS patients.

Long-term Care Through Medicaid

Through a separate Medicaid program, states also help pay for long-term non-medical care for some individuals. Eligibility guidelines are different from Medicaid’s health insurance program, and you must apply separately.

© Your ALS Guide 2025-2027

Health First Colorado is the Medicaid program for Coloradoans who can't afford to pay for medical care. Medicaid pays for a number of services, but some may not be covered for you because of your age, financial circumstances, family situation, transfer of resource requirements, or living arrangements. Some services have small co-payments. These services may be provided using your Medicaid card or through your managed care plan if you are enrolled in managed care.

Medicaid is a state/federal program that pays for medical services for low-income pregnant women, children, individuals who are elderly or have a disability, parents and women with breast or cervical cancer. To qualify, these individuals must meet income and other eligibility requirements.

To be eligible for Medicaid, you must meet a program type and meet the rules for Utah residency, income, and citizenship.

For more information, visit Utah Medicaid. 

Medicaid helps pay for healthcare services for children, pregnant women, families with children, and individuals who are aged, blind or disabled who qualify based on citizenship, residency, family income, and sometimes resources and healthcare needs.

For more information visit Wyoming Medicaid.