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Navigating the System

Knowing where to start after an ALS diagnosis is tough, but ALS Texas is here to support as you navigate insurance, unemployment, and more.

How You Can Make Healthcare More Affordable

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 the ALS Association’s advocacy, the Medicare wait time was reduced from 24 months to five, which can substantially offset the cost of quality medical care.

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

What you need to know about signing up for Medicare:

  • 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 reduced to five months for ALS patients because the disease progresses so quickly.
  • As soon as you receive SSDI benefits, you will receive Medicare coverage.
  • It can take up to five months for patients to be approved by Medicare and receive their Medicare card in the mail.
  • ALS patients can choose “Original Medicare,” (Medicare Part A or 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.
  • Your Medicare policy should pay for home health providers, which can help you live more independently with ALS. Coverage for nursing homes (for the first 100 days) and hospital facilities is also part of all Medicare coverage plans.

Medicare Rx Drug Benefit Open Enrollment

During the Medicare open enrollment period, those currently enrolled in a Medicare prescription drug plan have an opportunity to switch plans, or they can remain in their current plan. Those who did not 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 is important that people with ALS who have enrolled in the Medicare drug benefit take the time to review their prescription drug plan options, even if they are 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 taking into account a range of factors, such as coverage policies and your drug needs in addition to monthly premiums.

Need Help Signing Up For Benefits?

If you are having difficulty in enrolling in Medicare, we can help. For more information on navigating the system as an ALS patient, please contact your local Care Services Manager. Our staff is fluent in Medicare and can help answer your questions and help ensure you can access benefits as quickly as possible.

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At ALS Texas, we're here to help you and your family stay one step ahead of the disease through support groups, equipment loans, ALS clinics, and more.