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.
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.
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.
The Conversation Project: Provides guides to help you get started talking about a very emotional topic.
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.
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.
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.