As someone who contracted polio at the age of four in 1950, I have lived with disability my entire life. Now, at 75, I am still fighting for the support I need, not because my needs have diminished, but because the system deems me too old to help.
The National Disability Insurance Scheme (NDIS) excludes anyone over 65 from applying, regardless of whether their disability has been lifelong. This is ageism at its core, and it is compounded by the flaws in the new Support at Home program, which promises much but delivers inequity for older Australians like me.
As a self-funded retiree with 40 years of volunteering in the aged care and disability sectors, I am passionate about ensuring our systems respond to the diverse needs of all older people. Yet here I am, making do with second-hand equipment and limited care while watching a system that could help me slip further out of reach.
The core injustice of the NDIS age cut-off is simple. It is discriminatory and creates inequity across the community. Before the NDIS, I could access affordable supports where age was not a barrier. Now that has been denied. Born too early to qualify when the scheme launched a decade ago, I am left with a Transition Home Care Package (HCP) that provides just 9 to 10 hours of care per week, averaging $1,098 in spending. That might sound adequate on paper, but it is far short of what I would receive under the NDIS.
If eligible, I would have timely access to essential assistive technology (AT) like a custom power wheelchair with electric footplates and a powered headrest. These features would reduce my fatigue, prevent injury, and maintain my independence. Instead, I am on my third or fourth reissued second-hand chair in five years, each one groaning under the strain, just like I do.
A few years back, I was boarding a train when my second-hand-wheelchair malfunctioned. The clutches in both motors failed simultaneously, leaving me with no control or braking power. I barely avoided catastrophe by steering into a wall on a ramp. The railway staff helped, but it was a stark reminder that recycled equipment, while I support its reuse, often does not meet evolving needs. Chairs get written off because maintenance becomes too costly, and without proper funding I am always one breakdown away from disaster.
My current needs have changed. Neck pain requires better support, but I cannot afford a hydraulic headrest. A new, scripted power chair would cost more than $65,000, yet under Support at Home, AT over $15,000 is promised but doubtful. Approvals could take six months or more, with bureaucrats likely arguing that a $10,000 hire chair would suffice. In the meantime, I would rely more on carers, increasing burdens on my family and eroding my safety.
This is not just my story. It is a systemic failure affecting many older Australians with disabilities. Compare it to the UK’s NHS, where grants up to £30,000 (about AU$62,000) are available for AT and home modifications, and you can apply for more if needed. In Australia, we have never matched that. I recall a brilliant modification in Melbourne years ago: installing a lift in a garage to allow wheelchair access into a home with a steep driveway. It cost more than Support at Home’s $15,000 cap would allow, yet it preserved independence and prevented a costly move to residential care. Under the new program, such innovations are out of reach, leaving people hanging quite literally and figuratively.
Now, with Support at Home in effect, things are set to worsen. As a self-funded retiree, I expect that my contributions will double, based on percentages of services used rather than a fair income test. The model ignores unspent funds from previous packages, which many save for big-ticket items like AT. If you are only spending part of your allocation now, that is what they will base your grandfathered amount on, penalising prudence. For me, this means higher costs for the same inadequate support, all while my income remains fixed.
This user-pays approach ties costs to service usage, not affordability, hitting those with higher needs hardest. A full pensioner needing 12 hours of weekly support might face $150 to $200 in co-payments, which is unrealistic on $525.65 a week. For self-funded retirees like me, it is even steeper, potentially $700 to $800 weekly at higher levels. Hardship provisions are almost meaningless, unavailable if assets exceed $44,811 or deemed income exceeds $45,386. The result is depleted savings, reverse mortgages, forced home sales, or entry into privatised residential care. It uproots lives and communities.
The emotional toll is profound. Knowing I will not get approval for the equipment I need, I simply give up. What else can I do? It is disgusting, this ageism and inequity via partocracy, where Labor and the LNP are indistinguishable. I had hopes when the Albanese government took power, expecting a proper review. Instead, they have have made things even worse.
Minister Anika Wells reportedly dismissed a levy outright for political reasons, ignoring the Aged Care Royal Commission’s recommendation. That recommendation was backed by a Flinders University study where 61 per cent of taxpayers supported higher income taxes for quality aged care. Even Kantar Public’s research was twisted to vilify baby boomers, claiming we have had it too good, while overlooking that 88 per cent of pre-2025 home care recipients were exempt from fees due to financial hardship.
The consequences are dire. Australia is becoming a nation burdened by nursing homes instead of one that values its elders. Carers bear the brunt, dipping into superannuation or facing burnout. One couple I know, a retired health professional supporting her husband, has already withdrawn $200,000 from super, facing reduced pensions and potential home sales. Families are stretched thin, with misinformation from the system adding to the distress.
And we cannot ignore the budget blowout. Moving 820,000 people from the old Commonwealth Home Support Programme into Support at Home without safeguards will escalate costs rapidly, as people progress from low-level support at $11,000 to high-level support at $78,000. Remember that the $78,000 includes contributions and deductions, leaving far less in real support.
A fairer solution exists. Reinstate income-tested fees, not percentage-based contributions. Implement the Royal Commission’s hypothecated levy to share costs community-wide. We all age, after all.
And for the NDIS, lift the age cut-off. Ten years on, the number of excluded people is fewer, and many have passed. Let the remaining few in. It is not a big drain, and they would still meet strict criteria. Create a third tier if needed, bridging aged care and disability supports.
To Prime Minister Albanese and our leaders: this age cut-off and flawed program is indefensible. Move on from partocracy and build a system that respects frailty instead of penalising it. I urge everyone to write to the Aged Care Minister, your MP, and your Senators. I urge everyone with an interest in the well being of seniors to sign the following petition to abolish co-payments and demand change before even more lives diminish.
Let us ensure older Australians with disabilities are not written off like old wheelchairs. We deserve dignity, independence, and equity.
A report by the Australian Human Rights commission endorses this article.It states that Older Australians are being treated unfairly and are often excluded from decisions about their own Care. As this article points out “Ageism in the Health system can seriously harm health leading to worse outcomes, slower recovery and even earlier death. ” How many reports do we need before action needed is taken?
Peter, Ive had health issues for years. Had to medically retire at 50. Little superannuation as it had only recently been mandated. As a single mother, could never buy my own home.
This year, I was diagnosed with a lifelong illness that has caused all my health issues and was never diagnosed. I cannot afford any decent treatment and a L2 S@H goes nowhere to assist me nor would a L4 as I have a disability not caused by ageing. I value your sterling work to have this area identified and to be heard. There are many like us and maybe a new FB page would flush out others? Take care
Well said Peter
As a retired Nurse, having worked ferociously for Aged and Disabled people for most of my career, my RAGE knows no bounds regarding the dreadful system that has evolved, through Bureaucratic interference and money-grubbing “Privatisation” of Australia’s once great Health and Community Care.
How disappointing. Only 880 people took the time to sign this petition. At 69, I’m now facing my own battle with this debacle of a system.
I have only just read about this petition and cannot find it here. I will/would have signed.
I read above that suggested that a new FB page be created for the people in this situation and feel that perhaps more people would have signed if there was such a group.
If it is not too late to sign would you please direct me to it.
Such a reasoned and well written article. The co-payment system is totally unfair on full pensioners, how can anyone on a full pension afford the 17 1/2% fee they are expected to pay. I feel the elderly are being exploited so that the government can supply more child care at the other end of the age scale. Sacrifice the elderly in order to give more support to the young and I don’t think they are even means tested! What are we to do?
Well written Thankyou. This is certainly a case of discrimination.Can anyone tell me why the cut off point for the NDIS is 65? Surely as we get older we need the NDIS!!!
We so called baby boomers paid a tax every pay day towards our pension, which was stolen by the Labour party by Mr Keating, about $200 Million,so they owe us now, I am almost 85 and don’t receive anything ,as it’s all too stressful for seniors, so I will soldier on as usual,and I didn’t it easy being the eldest of 9 children, grade 8 education as did my late husband,we worked hard together for everything that we got,there was no dole handouts at that time but we had to pay for all the dole, baby bonuses pensions ECT,and I am still paying for all this,so we helped build this country of ours,so deserve to be looked after in our old age,