Money & planning
Financial resources for ALS caregivers and families
The cost of treatment, caregiving, equipment, and home modification adds up fast, but a wide range of help exists. Start with the government programs, they pay the most, then the ALS non-profits, then the general assistance funds.
Where to start
If you do only three things: apply for SSDI (ALS qualifies with no waiting period for Medicare), call The ALS Association chapter nearest you, and ask your clinic’s social worker which local funds are currently paying. The ALS Association is a US nonprofit that funds ALS research and provides care services through a nationwide network of ALS clinics. Everything below is organized by who runs the program.
Government programs
Social Security Disability Insurance (SSDI)
Provides monthly benefits to qualified individuals with disabilities, including ALS. Learn more and apply at the Social Security Administration website.
Medicare
Federal health insurance that can cover many ALS-related medical expenses, including durable medical equipment. Eligibility and enrollment at medicare.gov. The ALS Association also publishes a plain guide to signing up for Medicare.
Medicaid
Joint federal and state health coverage for low-income individuals and families. Each state administers it differently, so start at medicaid.gov and follow through to your state’s site.
Veterans Affairs (VA)
ALS is a service-connected condition for VA purposes. Veterans with ALS qualify for healthcare benefits, disability compensation, adaptive housing grants, and equipment support. Start with your VA social worker or a Veterans Service Officer.
There is no VA fund set aside only for ALS. Veterans with ALS qualify under existing programs:
- Comprehensive medical care at VA medical centers, including specialists, symptom treatment, and medications.
- Durable medical equipment such as wheelchairs, ventilators, communication devices, and other assistive technology.
- Home-based primary care, including medication and symptom management delivered at home.
- Respite care, with possible financial help so the caregiver gets a break.
- Disability compensation. Veterans diagnosed with ALS are typically eligible for 100% disability compensation, paid monthly and tax free. The amount depends on service history, disability rating, and number of dependents.
- Aid and Attendance, extra assistance for veterans who need another person’s help with daily living activities.
- Vocational Rehabilitation and Employment (VR&E), for veterans looking at other career options or adapting their skills to keep working.
Eligibility generally requires active duty service, typically 90 days, and a discharge characterized as other than dishonorable. Individual programs can add requirements, so ask your local VA medical center for a complete benefits evaluation.
Useful links: va.gov, VA disability compensation, the VA ALS benefits fact sheet (PDF), and the National Center for PTSD.
ALS non-profit organizations
Additional assistance
For veterans
The Independence Fund (adaptive equipment and housing modifications, 888-851-7996), Semper Fi Fund, and Paralyzed Veterans of America (866-734-0857) all serve veterans with ALS.
- independencefund.org, a non-profit that supports veterans with disabilities through adaptive equipment and home modifications.
- thefund.org, the Semper Fi Fund, which supports combat-wounded veterans, their families, and their caregivers.
- pva.org, Paralyzed Veterans of America, focused on veterans with spinal cord injuries and diseases.
For basic needs and one-time hardships
Project Main St. (rent, utilities, car repairs, 800-965-6246) and Modest Needs (one-time grants for unexpected bills, 844-667-3776) help with the expenses no medical program touches.
- projectmainst.org, for low-income families and individuals facing hardship.
- modestneeds.org, for one-time costs such as car repairs, medical bills, or rent.
For medication costs
NeedyMeds (800-503-6897) and the PAN Foundation connect patients with medication assistance programs at reduced cost. Both are listed in full above.
Start with the NeedyMeds database and the free drug discount card, then ask the PAN Foundation about the specific drugs you are prescribed.
For working out what you qualify for
If the list above is too much, hand it to someone whose job this is. Your clinic’s social worker knows which local funds are paying this month. Patient Advocate Foundation case managers (844-244-1306) do the same work by phone.
For a searchable list, use the NORD Patient Assistance Resource Center. Our support network directories page lists the groups and helplines worth calling first.
Planning ahead
Educational content only, not financial or legal advice. Program eligibility and funding change, so verify with each organization directly.