Australians living with motor neurone disease are falling through a gap in the country's care system, with patients diagnosed after the age of 65 locked out of the National Disability Insurance Scheme and forced to rely instead on the far more limited aged care system. The federal government has now announced urgent priority access for people with the illness, but advocates warn the level of funding still leaves many families to shoulder costs that can run them into financial ruin.
The human cost of that gap is laid bare in the case of Glenn Rowan, who has spent four years battling the disease. Once an avid sailor and swimmer, he now requires around the clock care as the condition strips away his ability to perform the simplest of daily tasks. Eating has become impossible for him to manage on his own, and even getting out of bed is beyond his reach without assistance.
Rowan says he is spending thousands of dollars a week out of his own pocket because government support covers only a fraction of what his care actually costs. He describes the arithmetic as unworkable, pointing out that it is impossible to fund a person's 24 hour care on the roughly 78,200 dollars available to him through the system, leaving the burden to fall squarely on patients and their relatives.
At the heart of the problem is an age threshold. Anyone diagnosed with motor neurone disease after turning 65 is not eligible for the National Disability Insurance Scheme and is instead funded through the aged care system, a model that advocates say was never designed for a fast moving neurological condition. The result is a sharp divide in support depending on how old a person happens to be when the diagnosis arrives.
Advocates argue that the aged care funding simply does not match the reality of the disease. They report that people with motor neurone disease are generally assessed at level three or level four, equating to about 30,000 dollars a year in support. That sum is enough to pay for someone to help a patient get out of bed and shower perhaps twice a week, with no flexibility to respond to the drastic decline in motor function that the illness so often brings.
The issue has been thrust into the national conversation by the recent death of Australian Football League legend Neale Daniher from motor neurone disease, which cast a fresh spotlight on the condition and prompted renewed calls for the government to expand aged care supports. The attention has given new urgency to longstanding warnings from carers and disability advocates about the shortfall.
Even with the government's announcement of urgent priority access for people with the disease, advocates insist that the amount of funding must be increased, describing the gap as enormous and warning that it is financially crippling, and in some cases bankrupting, families across the country. Compounding the strain, recent figures show older people are waiting an average of 12 months to access in home support. Rowan says it is too late to change his own circumstances, but he wants the government to act so that others diagnosed after 65 are not left to face the same fight alone.