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Medicare and Health Care for People living with ALS

Established in 1985, the ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  Click here to navigate to the ALS Association.

The Medicare Access Project (MAP) is intended for individuals served by the ALS Association.
All materials are Copyright © Center for Medicare Advocacy, Inc.

Learn More at the Links below:

Watch Recorded MAP Webinars:

Medicare Information for People Living with ALS

  • Medicare Benefit Policy Manual – Chapter 7 Home Health Services
    • NOTE: The Medicare requirements for the Plan of Care are located at pages 24-29 (Sections 30.2 through 30.2.10) of this document.
  • Questions regarding multiple payers of benefits? (Such as Medicare and private insurance or other coverage)?
    Call the Benefits Coordination and Recovery Center (BCRC) at Medicare to confirm they have all the correct information.
    The toll free number is 1-855-798-2627.

Print and keep any of the below information from the Center for Medicare Advocacy for your records.

    1. A Basic Introduction to Medicare

    Medicare is the national health insurance program to which all Social Security recipients who are either over 65 years of age or permanently disabled are eligible. In addition, individuals receiving railroad retirement benefits and individuals suffering from end stage renal disease are eligible to receive Medicare benefits.
    Read More – Who is eligible?  How do you enroll?  What are the costs involved?

    2. Medicare for People with Chronic Conditions

    Many beneficiaries and providers often have questions about obtaining Medicare and Medicare Advantage coverage for services provided to individuals with on-going, chronic conditions.  Medicare coverage can be available for health care and therapy services even if the patient's condition is unlikely to improve.
    Read MoreWhat services are available?  What coverage is required?  How do providers know if coverage is available? What is "skilled care" and who provides it?

    3. Medicare Coverage & Appeals

    Generally, coverage is available when services are medically reasonable and necessary for treatment or diagnosis of illness or injury.
    Read More – What services are covered by Medicare Part A?  What services are covered by Medicare Part B?  What ISN'T covered by Medicare?  How can I appeal a Medicare denial?

    4. Medicare Coverage for People with Disabilities

    Medicare is available for certain people with disabilities who are under age 65. These individuals must have received Social Security Disability benefits for 24 months or have End Stage Renal Disease (ESRD) or Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease).
    Read MoreCan my illness disqualify me for Medicare coverage?  Are the benefits the same for me as for those who qualify by virtue of age?  If I go back to work, can I keep my Medicare coverage?

    5. Durable Medical Equipment (DME)

    Durable Medical Equipment consists of items that have a medical purpose and repeated use.  They are covered by Medicare if certain specific criteria are met.
    Read MoreWhat types of DME does Medicare pay for?  What is the rental/ownership policy and what are the benefits to renting a wheelchair versus owning it? What is the Competitive Bidding Program?

    6. Home Health

    Home health claims are suitable for Medicare coverage, and appeal if they have been denied, if they meet specific criteria.
    Read More – When does Medicare cover home health care?  What services are covered?  What is considered "homebound" for Medicare coverage?

    7. Hospice Care

    Hospice care is compassionate end-of-life care that includes medical and supportive services intended to provide comfort to individuals who are terminally ill. Care is provided by a team.  Medicare claims for hospice care are suitable for coverage, and appeal if they are denied, if they meet specific criteria.
    Read More – When does Medicare cover hospice care?  What kinds of care are covered?  What is the difference between the regular Medicare home health benefit and hospice?  When will Hospice cover prescription drugs?  What is the difference between "palliative" care and "curative" care?

    8. Hospital Care

    Medicare claims for inpatient hospital care are suitable for Medicare coverage, and appeal if they have been denied, if the patient's condition must have been such that the care he required could only have been provided in a hospital, or he required a skilled nursing facility (SNF) level of care, and no SNF bed was actually available.
    Read MoreWhen does Medicare cover acute hospital care?  How many days of hospital care will Medicare cover?   What are the costs?  What is "Observation Status" and what can I do about it?

    9. The "Improvement Standard"

    For decades Medicare beneficiaries, particularly those with long-term, debilitating conditions and those who need rehabilitation services, have been denied necessary medical and rehabilitative care based on an "Improvement Standard." They are told that it is necessary to show improvement in order for Medicare to cover their skilled services.  This is not true.  Medicare does, and should, cover skilled services to maintain one's condition or prevent deterioration.
    Read MoreWhat is the Jimmo case and where does it stand now?  What can I do if I had services denied for lack of improvement, or was told they were "maintenance" services?

    10. Long Term Care

    Long Term Care Hospitals (LTCHs) provide care to patients with medically complex problems resulting in the patient requiring a hospital-level of care for an extended period.
    Read More – When is Coverage Available in the LTCH?

    11. Nursing Home and Skilled Nursing Facilities

    Medicare Part A provides payment for post-hospital care in skilled nursing facilities (SNFs) for up to 100 days per "spell of illness."  A spell of illness begins on the first day a patient receives Medicare-covered inpatient hospital or skilled nursing facility care and ends when the patient has spent 60 consecutive days outside the institution, or remains in the institution but does not receive Medicare-coverable care for 60 consecutive days.
    Read More – What does Medicare cover?  Can a patient who is receiving non-skilled "custodial" services receive Medicare coverage in a SNF?  What are examples of skilled services in a SNF?  Are there any tools for comparing nursing facilities?

    12. Part B Medicare

    Part B of Medicare is intended to fill some of the gaps in medical insurance coverage left under Part A. The major benefit under Part B is payment for physicians' services. In addition, durable medical equipment, outpatient physical therapy, x-ray and diagnostic tests, and home health care in certain circumstances are also covered.
    Read MoreWhat are all the things covered by Medicare Part B?  Does Medicare Part B pay for the entire cost of Part B services?  What does it mean if my doctor "accepts assignment?"  Does Medicare cover dental services, eyeglasses or hearing aids?  What is this new "competitive bidding" program all about? Do I need to change suppliers?

    13. Part D Medicare

    Medicare did not cover outpatient prescription drugs until January 1, 2006, when it implemented the Medicare Part D prescription drug benefit.  The Part D drug benefit helps Medicare beneficiaries to pay for outpatient prescription drugs purchased at retail, mail order, home infusion and long-term care pharmacies.  Medicare Part D is only available through private insurance companies – there is no public option for Medicare drug coverage.
    Read MoreAm I eligible for Part D?  What drugs are covered?  What are the costs involved?  How do I enroll?  What if I forget to enroll?  Is there help available with costs?  What if a drug I need isn't covered?

    14. Self Help Materials for Medicare Denials

    Did Medicare deny coverage for your needed services?  Appeal your own Medicare denial with these printable packets that include a handy checklist of steps to take.

    15. Speech Generating Devices (SGDs)

    SGDs are typically tablet-like units that allow a person to communicate thoughts by electronic voice generation when he or she is no longer able to speak.  Without an SGD, which is highly personalized and uniquely programmed, many people are isolated and awake, trapped inside a body they cannot control, with no ability to communicate.
    Read MoreWhy are SGDs so important?  Have there been changes in coverage?

    Downloadable Materials


    These small, easy-to-understand items discuss some of the “basics” of Medicare.  Print .pdfs using the links below.

    Self-Help Packets

    Appeal your own Medicare denials.  Each self-help packet includes information and materials needed to consider, and file, a Medicare appeal.  Each packet comes with an easy-to-follow checklist that tells you each step you need to take in your appeal.  Each packet also includes a discussion of the “Improvement Standard” and what to do if your denial is based on this illegal rule of thumb.  Print them using the links below.

    The Medicare Handbook, Chapter 4 – Home Health Coverage

    Taken word-for-word from the publication that is literally the book on Medicare, edited by Center for Medicare Advocacy Executive Director Judith Stein and Senior Policy Attorney Alfred Chiplin, this chapter is a complete, in-depth breakdown of Medicare Law and policy regarding home health care.  All the Medicare home health citations you need for reference or to support a case, right at your fingertips.

    MAP Webinars

    • MAP Webinar 1: An Overview of Medicare for People Living with ALS with an Emphasis on Medicare's Home Health Benefit

    Presented by Center for Medicare Advocacy Associate Director Kathy Holt and Executive Director Judith Stein, this webinar will discuss topics including: an overview of the Medicare program with particular focus on the home health benefit, Medicare eligibility and enrollment, and Medicare payment rules and assistance.

    • Log in to view this webinar
    • Download slides
    • MAP Webinar 2: Medicare Home Health Coverage & Case Studies (llustrating Required Components for Medicare's Home Health Care Benefit: Skilled Care, Homebound, face-to-Face Certification and "Dependant" Services Defined)