In a society that often values youth and productivity, the story of Glenn Rowan and other Australians living with motor neurone disease (MND) highlights a stark reality. It's a reality where age, an arbitrary number, can dictate the availability of crucial support and, ultimately, the quality of life and dignity in one's final years.
The Ageing Paradox
Imagine being diagnosed with a debilitating disease like MND, a condition that robs you of your physical abilities, and being told that your age determines the level of support you receive. This is the paradox faced by many Australians, like Mr. Rowan, who are diagnosed with MND after turning 65.
The National Disability Insurance Scheme (NDIS) provides priority access and substantial funding for those diagnosed with MND, recognizing the rapid deterioration the disease causes. However, if you're over 65, you're directed to the aged care system, which is ill-equipped to handle severe disabilities and offers a fraction of the funding.
Financial Burden and Early Euthanasia
Mr. Rowan's situation is a prime example of this disparity. Diagnosed at 71, he is ineligible for the NDIS and instead relies on the My Aged Care system. The highest support package covers a mere fraction of the actual cost of 24/7 care, leaving him to pay thousands of dollars out of pocket each week.
This financial burden is not just a strain on individuals but can lead to premature euthanasia, a choice Mr. Rowan is considering. The aged care system, designed for the elderly with age-related needs, fails to cater to those with severe physical disabilities, like MND.
Fast-Tracked Funding: A Step Forward, But...
The recent announcement of urgent priority access to funding for older people with MND is a step in the right direction. However, as MND Australia's CEO, Clare Sullivan, points out, it doesn't address the core issue of inadequate funding.
The automated assessment tool, while well-intentioned, often fails to recognize the unique needs of MND patients, categorizing them at lower funding levels. This results in families being financially crippled, if not bankrupt, as they struggle to provide the necessary care.
A Systemic Issue
The problem extends beyond individual cases. As Senator David Pocock rightly points out, the government's auto-assessment tool lacks the flexibility to consider exceptional cases like MND, where the need for support is significantly higher.
Professor Dominic Rowe, a neurologist specializing in MND, emphasizes the rapid physical deterioration associated with the disease, which sets it apart from other neurological conditions typically associated with ageing. The aged care residential sector, geared towards Alzheimer's patients, is simply not equipped to handle such severe physical disabilities.
A Call for Action
Mr. Rowan's plea for government action is a desperate cry for recognition and dignity. He urges policymakers to look beyond the numbers and consider the human cost of their decisions. For those with MND, the cost of providing adequate care is minimal compared to the potential financial ruin and loss of dignity they face.
In a society that values life and human rights, it's imperative that we address these systemic issues and ensure that age is not a barrier to receiving the support and care one deserves.
