Medicare offers specific treatment for ALS patients. Here’s some tips on how to receive the best care for your ALS care for services, equipment, and how to be vigilant in your own care.

ALS Medicare Care

Most ALS care is treated in out-patient care by Medicare Part B. You will be responsible for a Medicare Part B costs:$185 deductible, copays, coinsurance, and excess charges. If you are hospitalized, which is not often for patients with ALS, Medicare Part A covers this. You will still be responsible for your Medicare Part A costs: $1,676 per benefit period deductible and coinsurance (varies), as well as Medicare hospital stay limitations.

ALS Hospitalization Tips

Remember that ALS is a rare disease and that many of the hospital staff will never have worked with an ALS patient. You will need to be vigilant in your own care. Ways to do this are:

  • Research hospital facilities that are familiar with ALS prior to hospitalization
  • Assign an Advance Directive to a friend or family member to take care of you in case of incapacitation
  • Inform staff about your ventilation, communication, nutrition, and mobility needs and capabilities
  • Label equipment you have brought from home
  • Have a summary sheet of your ALS prescription medications on hand

ALS Medicare Durable Equipment

Home Health Care services for ALS patients (and all Medicare recipients) are at no cost with Original Medicare, however Durable Medical Equipment generally costs 20% of Medicare’s costs. Here are two important devices used by ALS patients: 1) Speech Generating Devices to help create speech are for rental only for the first 13 months; and 2) Headmouse Systems are not covered by Medicare if only for the purpose of headmouse services (to visually type).

Help Covering ALS Medicare Costs

Medicare still leaves significant costs for those with ALS, therefore there are two options offered to help:

Medicare Advantage and ALS

  • Pro: Any age may enroll and limits out of pocket expenses to as high as $9,350 a year.
  • Con: Offers limited network, therefore ALS specialists will be limited

Medicare Supplement and ALS

  • Pro: Can cover all of your Medicare out of pocket expenses and extend hospitalization an additional 365 days.
  • Con: Generally only available to those over 65 and only when first eligible for Part B

For further questions about how Medicare covers ALS services and/or click here to see a Medicare insurance quote on how to limit your out of pocket expenses.

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