Motor neurone disease (MND) is a progressive neurodegenerative condition that damages communication between the brain, spinal cord and muscles. There is no cure, and average life expectancy following diagnosis is just two to three years. Despite the severity of the disease, people with MND face a fragmented and inequitable system of care. A major driver of inequity is an age-based divide in funding. 

The consequences are severe: reduced access to services, loss of independence and poorer quality of life. The personal toll is devastating, with individuals experiencing continual loss of function, autonomy and identity. arers face heavy physical, emotional, and financial strain, with many reporting exhaustion, distress, and disruption to work and relationships. The societal cost is also substantial.

This report aims to guide policy decisions that enhance care, support, and quality of life for people living with this progressive, terminal condition and those individuals that care for them. It provides a comprehensive analysis of MND’s impact and delivers five recommendations to address these challenges and improve outcomes. 

Key findings

• In 2025, an estimated 2,752 Australians will be living with MND, with numbers projected to rise to more than 4,300 by 2050.
• Those diagnosed before 65 can access the National Disability Insurance Scheme (NDIS). In contrast, those diagnosed at 65 or older – the majority of MND cases – must rely on the Support at Home program.
• The funding gap means that in 2025, 63% of people diagnosed with MND will receive significantly less support despite facing the same urgent care needs.
• Modelling estimates the total economic and burden of disease cost will reach $5.02 billion in 2025, rising to $7.51 billion by 2050.