VA ALS System of Care
Learn more about ALS Care at VA
Amyotrophic lateral sclerosis (ALS) is a disease that attacks the nerve cells in your brain and spinal cord, and especially those that control voluntary muscle movement. In ALS, these nerves are destroyed. This causes the muscles we use to move, swallow, speak, and breathe to get weaker over time. In addition, we now know ALS can affect other functions like thinking, behavior, or bowel or bladder function.
About 30,000 people in the U.S. are living with ALS, and about 5,000-6,000 people are diagnosed each year.
ALS and Veterans
Studies have shown that U.S. Veterans are about 1.5 times more likely to get ALS compared to people who were never in the service.
For that reason, ALS became a 100% service-connected condition for any Veteran with ALS who served longer than 90 days, received an honorable discharge, and was later diagnosed with ALS.
How to get care for ALS at VA
We recognize that this can be an overwhelming time and know how important it is to find support quickly.
Every VA medical center has an ALS Coordinator. If you think you may have ALS, speak to your primary care provider, or contact your local VA health facility to be connected to the ALS Coordinator for assistance with enrollment immediately. If you're not enrolled in VA health care, learn how to apply for VA health care.
You can also get help from an accredited attorney, claims agent, or Veterans Service Organization (VSO) representative to file a claim or request a decision review. Find an accredited representative today.
Where to go for care at VA
We work to provide you with the right care at the right time and location for you. We provide your care at the VA facility closest to your home that has the know-how to manage your needs. If you need a high level of care, you may need to travel to the VA facility that can provide that care. Virtual care may also be an option.
Here’s a map of VA ALS clincs and coordinator contact information.
Getting connected to an ALS clinic has been shown to improve life expectancy and quality of life. Here are some clinic locator tools from our community partners:
ALS Certified Centers & Clinics | The ALS Association
ALS Clinic Map - I AM ALS
ALS Geospatial Hub (arcgis.com)
How the VA treats ALS
One of the most effective treatments for ALS is to receive care from a specialized ALS care team. The VA ALS care team is a group of health care experts who work with you to figure out the best plan. The care team can help you with:- Mobility
- Self-care needs
- Staying as independent as possible
- Speech and communication
- Swallowing
- Nutrition and hydration
- Thinking or memory changes
- Drooling
- Uncontrolled laughter or crying
- Breathing problems
- Energy for activities of daily living
- Pain management
- Mental health
- Living your life to its fullest
- Preparing for future decisions about your medical care
- Discussing risks and benefits of the available medications to slow progression of ALS
- Discussing options for research and clinical trials
- Genetic testing and counseling
- Off-label and complementary or alternative treatments for ALS
The VA ALS Coordinator- Your team’s “quarterback”
Many Veterans and their families are overwhelmed by the amount of new information, paperwork, and decisions they are faced with after a diagnosis of ALS. For that reason, VA has one ALS coordinator at each of our medical centers. These individuals serve as a system navigator and advocate for Veterans and their families to streamline care as much as possible.
VA and Virtual Care
The VA pioneered telehealth care in the United States. If you have difficulty getting specialty care due to distance or disability, telehealth may be for you. Let your ALS coordinator know if you would prefer to receive some of your ALS care by telehealth.
What to expect from the VA ALS System of Care
The VA outlined the expectations for ALS care across VA in the ALS Directive in 2021. This document provides an overview of the roles and responsibilities for ALS care at each VA facility.
Our Community Partners
VA works with many community partners to provide the most up-to-date information and resources for Veterans with ALS. Here are a few examples:
- I AM ALS Support Groups
- ALS Support Groups | The ALS Association
- Free ALS support groups | Less Turner ALS Foundation
- Roon
- Your ALS Guide
- ALS Network - Connection groups and Webinars
- National ALS Registry
- ALS United
VA resources for ALS
- Veterans Health Library
- How to file a claim
- How to upload medical evidence to support a disability claim
- VA Caregiver Support Program Tips-ALS
- VA Healthcare
- Find a VA accredited representative or VSO
- VA presumptive conditions
- Disability Housing Grants for Veterans
Research
Find ALS research information
