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.

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.

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.