ALS is back in the public conversation following ALS Awareness Day on June 2. Recently musician John Driskell Hopkins, a founding member of Zac Brown Band who has publicly discussed living with ALS, is a reminder that this disease affects families across the country.
For Veterans, ALS has an especially important VA benefits angle. The Department of Veterans Affairs says studies have shown that U.S. Veterans are about 1.5 times more likely to get ALS compared to people who never served. VA also says ALS became a 100% service-connected condition for Veterans with ALS who served longer than 90 days, received an honorable discharge, and were later diagnosed with ALS.
That can make a major difference for Veterans and families dealing with a frightening diagnosis.
What is ALS?
ALS stands for amyotrophic lateral sclerosis. It is also known as Lou Gehrig’s disease. VA describes ALS as a disease that attacks nerve cells in the brain and spinal cord, especially the nerves that control voluntary muscle movement. Over time, ALS can weaken the muscles used to move, swallow, speak, and breathe.
ALS can also affect thinking, behavior, bowel function, bladder function, communication, mobility, nutrition, breathing, pain, and daily independence. For many families, the diagnosis brings medical, financial, emotional, and caregiving challenges all at once.
Why ALS matters for Veterans’ benefits
Many VA disability claims require Veterans to prove a connection between military service and the current disability. ALS is different.
VA’s ALS System of Care page states that 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.
That means Veterans diagnosed with ALS should not assume they have to prove a specific exposure, event, injury, deployment, or location caused the disease. The key issues often become documentation, eligibility, filing, effective dates, related benefits, and whether VA properly recognizes the full impact of the condition.
What Veterans should do after an ALS diagnosis
A Veteran or family member dealing with ALS should consider these practical steps:
- Get the diagnosis records. Keep neurology records, testing, imaging, EMG/nerve studies, specialist notes, medication lists, and any written diagnosis.
- Locate military service records. Keep a copy of the DD-214 and any records showing length and character of service.
- File or preserve a VA claim date. VA explains that effective dates can affect when benefits begin. In many cases, the date VA receives the claim or intent to file can matter.
- Ask for the VA ALS Coordinator. VA says every VA medical center has an ALS Coordinator. Veterans can ask their primary care provider or local VA facility to connect them.
- Ask about the full ALS care team. VA’s ALS care team may help with mobility, swallowing, nutrition, breathing problems, pain management, speech and communication, mental health, self-care needs, future planning, and clinical trial options.
- Ask about Special Monthly Compensation. VA describes Special Monthly Compensation as an additional tax-free benefit for Veterans with special circumstances, such as the need for aid and attendance or loss of use of a hand or leg.
- Keep track of caregiving needs. Families should document help needed with bathing, dressing, eating, toileting, transfers, communication, medication, breathing support, transportation, and safety.
Do not overlook Special Monthly Compensation
A 100% rating may not be the end of the analysis. ALS can affect breathing, speech, swallowing, mobility, use of the hands, use of the legs, and the ability to perform daily activities independently.
That is why Veterans and families should ask whether Special Monthly Compensation may apply. SMC can be important when a service-connected disability causes a need for regular aid and attendance, loss of use, housebound status, or other severe limitations.
Families should keep detailed notes about what help is needed and how often. Helpful records may include home health notes, caregiver logs, physical therapy notes, occupational therapy notes, speech therapy notes, respiratory records, prescriptions for mobility equipment, and statements from family members who provide care.
Why effective dates matter
The date of a VA claim can matter because it may affect the amount of past-due benefits. VA explains that for many disability claims, the effective date is the date VA receives the claim or the date the illness or injury began, whichever is later. VA also explains that an intent to file may help preserve a potential effective date while the Veteran gathers evidence.
For a serious condition like ALS, families should not wait to ask questions about filing. A Veteran can still gather medical evidence after preserving a claim date.
Records Veterans and families should keep
If ALS is involved, keep copies of:
- Neurology records and diagnostic testing
- VA and private treatment notes
- DD-214 and service records
- VA claim forms and decision letters
- VA portal messages and mailed notices
- Caregiver notes and home health records
- Equipment prescriptions and repair records
- Records showing falls, choking events, breathing problems, hospitalizations, or worsening mobility
- Denials, rating decisions, and appeal documents
These records can matter for the initial claim, the effective date, SMC, adaptive housing, caregiver support, and appeals.
Bottom line
ALS is a devastating diagnosis, but Veterans should know that VA has special rules and care resources for ALS. A Veteran who served longer than 90 days, received an honorable discharge, and is later diagnosed with ALS may be entitled to 100% service connection. Depending on the severity and care needs, additional benefits such as Special Monthly Compensation may also be important.
Veterans and families should move quickly, preserve records, ask for the VA ALS Coordinator, and get help reviewing the claim if VA denies benefits, assigns the wrong effective date, or fails to consider the full impact of the condition.
This article is for general information only and is not legal advice. Reading this article or contacting our office does not create an attorney-client relationship unless we agree to representation in writing.