A man with Motor Neurone Disease (MND) in Queensland has chosen to access voluntary assisted dying after being denied support through the National Disability Insurance Scheme (NDIS) due to his age, sparking a debate about Australia's two-tier approach to disability and aged care. Tony Lewis, 71, was diagnosed with MND last year and is excluded from the NDIS because of his age, despite the scheme's aim to support people with disabilities from early onset.
Instead, he must rely on the aged care system, which is widely acknowledged as inadequate for fast-progressing neurological conditions. Motor Neurone Disease is terminal and degenerative, and people with the condition can lose the ability to walk, speak, eat, and breathe within a short period of time, often requiring intensive and continuous support.
While those diagnosed earlier in life may receive extensive funding through the NDIS, older Australians with the same condition are directed to My Aged Care, where annual support is capped at a fraction of that amount. Mr Lewis currently receives funding that covers only a small number of basic services each week, and the reality of his care needs far exceeds what is funded.
His wife, Gill, who has a nursing background, has taken on the role of primary carer, but the pressure is immense. As Mr Lewis' condition changes, requests for reassessment can take months, during which his needs continue to grow. The burden of navigating the system, managing costs, and filling gaps in care has become a constant source of stress for the family.
Faced with the prospect of further decline without adequate support, Mr Lewis has chosen to begin the voluntary assisted dying process. He has been clear that the decision is not driven by a lack of will to live, but by the absence of appropriate care options that would allow him to remain at home with dignity.
Disability and health advocates say his case exposes a stark inequity. People with identical diagnoses can receive vastly different levels of support based solely on age. The result is a system where access to equipment, personal care, communication technology, and home modifications is determined not by medical need, but by the date on a birth certificate.
Motor Neurone Disease organizations report that many older patients rely heavily on charities to obtain essential equipment. Others are pushed into residential aged care or remain in hospital because appropriate home support cannot be arranged in time. In some cases, the lack of coordinated care contributes to unnecessary suffering and loss of autonomy.
The federal government has stated that recent aged care reforms will improve access to assistive technology and home modifications, and that urgent cases will be prioritized. However, clinicians and advocates argue that these measures still fall short for people with rapidly progressing disabilities who require immediate, intensive support.
Mr Lewis has spoken publicly not in the hope of changing his own outcome, but to highlight what he sees as a systemic failure. His decision has forced an uncomfortable question into the national conversation: when people choose to end their lives, how often is that choice shaped by policy gaps rather than personal preference?
As Australia continues to reform both disability and aged care systems, cases like this underscore the consequences of leaving people caught between them. For some, the cost of that divide is not theoretical; it is measured in exhaustion, distress, and, ultimately, life itself.
