SOCIAL SECURITY DISABILITY INSURANCE (SSDI), Medicare, and Medicaid
People with ALS can access Social Security Disability Insurance (SSDI), Medicare, and Medicaid benefits. Getting the application process underway as soon as possible will allow you to begin receiving benefits. 

• The ALS Association answers some frequently asked questions about SSDI and Medicare, including a link to eligibility.
• I AM ALS provides information to help you understand the ins and outs of applying for these benefits.

​VETERAN'S ADMINISTRATION BENEFITS
If you are a veteran with ALS, your ALS diagnosis likely qualifies you for 100% disability and compensation from the VA, regardless of your branch of service or what job you did while in the military, as long as you have 90 continuous days of active duty.

• ​I AM ALS has excellent advice to help you with the process of getting benefits: Navigating the Veterans Administration (VA) with ALS - I AM ALS
• The Veteran's Administration

​LEGAL DOCUMENTS
Living Wills and Advance Directives for Medical Decisions: By planning ahead, you can get the medical care you want, avoid unnecessary suffering, and relieve caregivers of decision-making burdens during moments of crisis or grief. You can also help reduce confusion or disagreement about the choices you would want people to make on your behalf. Mayo Clinic explains each document and why they are necessary. Learn about them here.

Advance Directives: CaringInfo provides information about advance directives and gives links to forms for the state you live in.

END-OF-LIFE PLANNING
The Conversation Project: Provides guides to help you get started talking about a very emotional topic.

• ​Conversation Starter Guide
• ​Talking with Your Health Care Team

I AM ALS: Provides necessary information about preparing for and talking with loved ones. ​Get Help and Support - I AM ALS.

I AM ALS: Talks about the difference between palliative care and hospice.

CaringInfo provides a helpful comparison between palliative care and hospice.
NEALS (Northeast ALS Consortium: Provides a webinar that reviews what palliative care is and how it can support the quality of life for people living with ALS.
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VOICE BANKING
People with ALS often lose their ability to speak. For some, this change happens quickly; for others, this change may be more gradual. In any case, it’s important for people with ALS to consider voice banking and/or message banking as soon as possible after diagnosis, while they still have their strongest voice possible.

• Team Gleason collaborates with the Boston Children’s Hospital ALS Augmentative Communication Program to provide expert guidance and support for proactive voice preservation through voice banking, BCH Message Banking™ Protocol and “double dipping” for people with ALS. Information can be found here.
• The ALS Association has a list of voice banking services.

GENETIC TESTING
​ Genetic testing looks for changes, also called mutations, in your DNA. When these mutations occur in specific genes, they can cause ALS or increase your risk of developing the disease. 

• With advances in technology and the development of gene-targeted therapies, knowing whether your ALS has an underlying genetic cause – and if so, identifying the disease-causing mutation – has become more important.
• In 2023, the FDA granted accelerated approval to tofersen, a treatment for people living with ALS tied to mutations of the SOD1 gene.

However, the decision whether to get a genetic test is a very personal one. Get information about genetic testing for ALS so you can start to think about whether it might be the right choice for you.

• The ALS Association answers some frequently asked questions about genetic testing.
• The Les Turner ALS Foundation has a guide relating to genetics and genetic testing.