A Queensland man with Motor Neurone Disease has chosen to access voluntary assisted dying after being denied support through the National Disability Insurance Scheme because of his age, reigniting concerns about Australia’s two-tier approach to disability and aged care.
Tony Lewis is 71. Diagnosed with Motor Neurone Disease last year, he falls outside the eligibility criteria for the NDIS, which excludes people diagnosed after the age of 65. Instead, he must rely on the aged care system, where funding levels and response times are widely acknowledged as inadequate for fast progressing neurological conditions.
Motor Neurone Disease is terminal and degenerative. People 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. The reality of his care needs far exceeds what is funded. Most of his daily support is provided by his wife, Gill, who has a nursing background and has taken on the role of primary carer.
Despite her experience, the pressure is immense. As Mr Lewis’s condition changes, requests for reassessment can take months. During that time, 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 organisations 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 prioritised. 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.
This is totally unacceptable. I am sooo sorry Mr Lewis. I am not surprised by the heartless organisations and the cold beurocracy behind ever decision.
There is absolutely no help for people who are older and living with unendurable pain. That people choose to die because there is no support or help, is the hallmark of a society without compassion.
I agree with you Ebony. It is unconscionable and unforgivable. No wonder lots of us don’t want to be here. What’s the point. I hope you’re okay Ebony.
What a dreadful situation for Mr Lewis. Yet another example of how the government doesn’t give a toss for the ageing population, with its hardhearted approach to Mr Lewis’ predicament.
I don’t know who it is that makes these decisions without any empathy for individuals whose misfortune sees them faced with the choice of ‘assisted dying’ rather than help.
Ludicrous.
Yes, this is indeed unacceptable.
Many don’t know that the NDIS Act itself bans disabled over 65, if they had their disability since childhood.
So a better decision for Mr Lewis is made impossible- there is zero discretion allowed.
Section 22 of the Act does this evil deed.
If anyone opposes it, contact the NDIS minister and say so. We all have a part to play, and simply calling it out is powerful.
So decisions are prevented
It’s a tragedy that Mr Lewis and his family are subjected to this cruelty and forced into a lethal choice
The NDIS age ban is a shocking breach of human rights, doubly worse because it is actually enshrined in Commonwealth legislation.
People may like to know that the ban is currently facing 3 legal challenges :
1. My United Nations case under the Convention on the Rights of People with Disabilities. The Commonwealth has postponed its defence a few times but expected to lodge it in February.
2. My case before the Australian Human Rights Commission
3. A class action has been mooted and is seeking a funder
It would be excellent if HelloCare could follow-up these matters.
.
Well said Peter!
Mr Lewis’ situation is indeed very sad, and reflects very poorly on our Disability, Aged Care and Health Systems.
However, your article makes no mention whatever of his eligibility to access VAD, which is very poor reporting – dare I say unprofessional. Mr Lewis will not be able to access VAD unless 2 doctors agree that his prognosis is that he has less than 12 months to live. VAD is a very sensitive issue for many people, and to report about it with such lack of knowledge is completely unacceptable!
The vast majority (>80%) of Australians support the right to choose VAD when NO OTHER medical treatment is able to prevent suffering at the end of life. It should not be reported in such a sensationalist negative manner, and your Editorial team should be ashamed of themselves.
I suspect that Mr Lewis mentioned VAD as a way of generating publicity for his tragic circumstances, hoping that it will shine a light on the inadequacy of funding for Health Care, resulting in a political rethink of their policies. If that was his intention, let us hope that he has succeeded splendidly!!
Like everyone else says, this is abjectly appalling. I’ve got nothing new to say, but I just wanted to add my voice. In this country!! The lack of humanity is astounding. The poor family. The heartache they must feel.