Information updated August 2023.
The Patient Advocate Foundation has a ALS Medicare Resource Line, a program that offers free and confidential navigational assistance with financial and practical challenges that impact your ability to access healthcare.
Medicare Educational Webinars
Medicare Access Project Webinar Series 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 addresses 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.
Medicare Access Project Webinar Series 2:
Case Studies Illustrating Required Components for Medicare's Home Health Care Benefit: Skilled Care, Homebound, face-to-Face Certification and "Dependent" Services Defined
The webinar, presented by Center for Medicare Advocacy, will provide an opportunity to learn using real-life cases to show people living with ALS how to further understand and maximize their home health benefits.
Medicare and Home Health Information for People Living with ALS
Hiring in-home assistance can help you cope effectively with the everyday challenges of living with ALS, as well as relieve some of the pressure on family caregivers. But sometimes, it can be difficult to make the decision to bring on additional support. Here are some guidelines that can help you with the decision process.
Read More When is the right time to consider in-home help? What type of home care assistance is appropriate for your situation? How do you find and hire in-home help?
When you are considering home health care services, it can be helpful to know the lingo. This is a glossary of commonly used terms in home health care.
Medicare is a federally funded insurance plan that provides health insurance to people 65 years and older, as well as to younger people with certain disabilities and conditions (including ALS).
Because of your ALS diagnosis, you are automatically enrolled in the Medicare program as soon as you begin to receive disability benefits from Social Security (or, if you were a railroad worker, the Railroad Retirement Board).
Read More What is Medicare? How do you receive home health benefits under Medicare? What is a Medicare-certified home health agency and how do you choose one?
If you have ALS or are caring for a loved one with ALS, there are many reasons to consider hiring in-home help. One route is to find and hire help on your own, but a home health care agency can provide a wide range of care and support services while also handling day-to-day administrative tasks, such as managing personnel and payroll. If you’re thinking about hiring help through a home health care agency, here’s an approach for finding an agency that is a good match.
Read More How do you find your in-home help requirements? How do you identify your options? How do you assess your choices? What services might private insurance cover?
For most families living with ALS, in-home care becomes a necessity at some point. The expenses associated with in-home help can add up quickly. Public insurance plans (such as original Medicare and Medicaid) and private insurance plans (such as Medicare Advantage, an employer’s health insurance plan, or long-term care insurance) may help to cover some of the costs associated with in-home help. This article will cover several payer options that may be available to you.
Read More What is Medicare and what services are covered? What is Medicaid and is it possible to receive benefits under both Medicare and Medicaid? What services might private insurance cover?
As you live your life with ALS, you will most likely be supported by many different home care workers, each responsible for providing specific types of care and services to you. This article will review the various types of workers who could be on your home support team.
Read More Who are assistive care providers and what services do they perform? Who are skilled care providers and what services do they perform? What is the difference between assistive care and skilled care?
Many families choose to use a home health agency or a non-medical home care (companion) agency to match them up with suitable employees and coordinate the delivery of services. Other families opt to hire help independently, using personal referrals or an employment (registry) agency. This article will address the steps and considerations necessary to hire in-home help on your own.
Read More How do you recruit an in-home helper? What questions should you ask a potential in-home helper? Is an employment contract necessary and what factors should the contract cover?
Adapting your living environment to meet your changing needs will become a necessity as the ALS progresses. Environmental modifications can help you to stay safe and retain your independence for as long as possible.
Read More How do you identify and plan for home modification needs? What potential funding options exist for accessibility modifications?
When you hire in-home help, either through an agency or on your own, you automatically become an employer and a supervisor. These may be roles you are comfortable with, but for many people, managing the relationship with in-home service providers is unfamiliar territory. The people who assist you are integral members of your health care team, so you want to do everything you can to ensure that they are able to do their jobs effectively.
Read More How do you orient an in-home caregiver to the job? How do you communicate effectively with in-home service providers?
It can be difficult to plan for the future when you are focusing on living in the present. But giving thought to what lies ahead can help you live your best life now and provide you, and your family members, with peace of mind going forward.
Read More What future care decisions might you consider? What financial planning steps should be taken? What is estate planning and why is it important?
Respite is a service that provides family caregivers with time away from their caregiving responsibilities. Respite offers the caregiver a chance to meet his or her own needs, which benefits both the caregiver and the care recipient.
Read More What are the different types of respite arrangements? What payment options exist that may help pay for respite services?
Hospice is a model of care that focuses on providing physical and emotional comfort to people who are dying, and on supporting their families, during the end-of-life period.
Read More When is it an appropriate time to consider hospice care? How do you choose a hospice provider? What payment options exist that may help pay for hospice services?
The ALS Association is pleased to partner with Center for Medicare Advocacy (CMA) to provide the following materials. These materials can be accessed here and on CMA’s ALS Medicare Access Project webpage.
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?
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 More What services are available? What coverage is required? How do providers know if coverage is available? What is "skilled care" and who provides it?
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?
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 More Can 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?
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 More What 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?
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?
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 More When 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?
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 More What 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?
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?
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 More What 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?
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 More Am 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?
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.The following self-help packets are available for download:
- Ambulance Appeal
- Outpatient Therapy Denials (including “Improvement Standard” denials)
- Home Health Care Appeals (including “Improvement Standard” denials)
- Hospital Discharge
- Skilled Nursing Facility Appeals (including “Improvement Standard” denials)
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 More Why are SGDs so important? Have there been changes in coverage?
Taken word-for-word from the 2016 Edition of Medicare Handbook, 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.
This brief, easy-to-understand booklet discusses some of the basics of Medicare, including: What is Medicare? Who is eligible? What are the parts of Medicare? What are the costs involved?
This brief, easy-to-understand booklet discusses some of the basics of Medicare Advantage, including: What is Medicare Advantage? What do I need to know before signing up for MA? When can I enroll in an MA plan? What if I want to leave the plan?
This brief, easy-to-understand booklet discusses some of the basics of Medicare for people with chronic conditions, including: What is skilled care? What are Medicare’s coverage requirements for skilled care?
This brief, easy-to-understand booklet discusses some of the basics of Medicare for people with disabilities, including: How do people with disabilities qualify? How do they enroll? Are the same Medicare benefits available?
This brief, easy-to-understand booklet discusses some of the basics of Medicare home health coverage, including: What is covered? What if coverage is denied?
This brief, easy-to-understand booklet discusses some of the basics of Medicare hospice coverage, including: What is hospice? What care is covered under hospice? How long can it last?
This brief, easy-to-understand booklet discusses some of the basics of Medicare Part B coverage, including: What kinds of services or items are covered? What are the costs involved? What if coverage is denied?
This brief, easy-to-understand booklet discusses some of the basics of Medicare Part D prescription drug coverage, including: Am I eligible for Part D? When do I enroll? Do I have to enroll? What does it cover? Is there help for the costs?
This brief, easy-to-understand booklet discusses some of the basics of Medicare preventive health benefits, including: What preventive care does Medicare cover? Is a “Wellness Visit” a physical?
This brief, easy-to-understand booklet discusses some of the basics of Medicare Skilled Nursing Facility coverage, including: What is covered? What if coverage is denied?