Caregiver Rights
The Les Turner ALS Foundation is here to help you confidently navigate your needs and rights as a caregiver for someone living with ALS. You can learn more about our programs and services here.
Knowing your rights as a caregiver can help you advocate for yourself and your loved one to receive the support you need.
As a caregiver, you have the right to:
Have access to tools that will facilitate and help your effort as a caregiver:
- Education to enable you to play an active role in making decisions about care, clinical trials and support
- Regular training and resources to be better able to provide for the person living with ALS at home (for example home care, first aid, handling of equipment and medicines, etc.)
- Timely appointments and treatments for the person living with ALS
Receive any available financial resources that you qualify for:
- Disability benefits (or Veterans Administration benefits, if applicable)
- Medicare, Medicaid, private insurance
- State programs
- Non-profit grants available to assist with the care for the person living with ALS
Receive support in all areas including:
- Counseling
- Respite care programs
- Time to take care of yourself and to seek help when you need it
- Planning for your own future
- Palliative care, hospice care and bereavement guidance and services
Provide input on the healthcare and support systems:
- Policymaking
- Healthcare delivery
- The opportunity to influence and improve the ALS research process
*Adapted from the International Alliance of ALS/MND Associations’ Fundamental Rights for Caregivers of People Living with ALS (Rev. April 2021)
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