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The ALS Association

ALS Insight eNewsletter: Spring 2016


The ALS Association recognizes the importance of people having a working knowledge of Medicare in order to determine eligibility, understand benefit interpretations, increase ease of access to potential benefits and for general planning and decision making.

In order to help people living with ALS and their families navigate the complexities of Medicare Home Health Benefits, The ALS Association has worked to create educational materials and develop partnerships to better serve the ALS community.

These resources range from introductory level educational materials, such as considerations to help identify when to hire in-home help, choosing a home health agency and paying for home care, to more advanced content that covers a wide-range of Medicare benefits and information on how to file appeals.

Included in this newsletter are examples of resources that can accessed through The ALS Association's website.


Upcoming - Medicare Home Health Benefits: A Case Study

Case Studies Illustrating Required Components for Medicare's Home Health Care Benefit: Skilled Care, Homebound, Face-to-Face Certification and “Dependent” Services Defined.

This webinar will provide an opportunity to learn using real-life cases to show people living with ALS and their family how to further understand and maximize their home health benefits. The webinars will be open to people living with ALS, families, clinicians, ALS Association staff and volunteers, and other interested people.

Session 1: Thursday, June 30, 2016 (1:00 3:00 pm ET) Click here to register.

Session 2: Thursday, July 7, 2016 (3:00 5:00 pm ET) Click here to register.

Session 3: Wednesday, July 13, 2016 (6:00 8:00 pm ET) Click here to register.

On Demand - Medicare Overview for People with ALS

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.

View the webinar recording (Register and view recording)


Medicare and 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).

Different Types of Home Care Workers

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. Here’s a review of the various types of workers who could be on your home support team.

Choosing a Home Health Care Agency

If you have ALS or are caring for a loved one with ALS, there are many reasons to consider hiring in-‐home help. 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.

Hiring In-home Help Independently

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.

View More Resources

Click here to view all medicare and home health resources for people living with ALS.


We Want to Hear from You

Global ALS Awareness Day is Tuesday, June 21, and we’re commemorating the special day with a virtual listening tour event! People living with ALS and their caregivers are invited to join ALS Association CEO, Barbara Newhouse, and members of the National Board of Trustees from 1-3 PM EDT to express their thoughts and ideas that will help advance our quest to treat ALS once and for all! Your participation is greatly appreciated.

Please RSVP by 5 PM EDT on Monday, June 20.


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