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:
Caregiver tools

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
Financial Resources

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
Healthcare and Support Systems

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)

Learn more about ALS & Caregiving

Care. Community. Cure.

We provide individualized care, local community support and hope through
scientific research.