I’m a 95-year-old carer for my son. I fear I’ll die before he gets help

The NDIS is very mindful about birthdays. Your 65th is very special, it’s the date on which you officially become “aged”. I’m 95, so I’m not sure what that makes me.

Our family had no time for cake with candles and singing Happy Birthday for my son Dan who lay unconscious in the intensive care unit of The Alfred hospital as he turned 65 in 2023. We sat and held his hands, willing him to live.

Ros Collins, 95, says she will continue to fight for care for her son. Credit: Simon Schluter

Dan had been sent home from hospital twice with the advice that he should take Panadol. He collapsed on August 24 and “celebrated” his birthday on September 1 in the ICU.

For two months, the neurosurgeons we owe so much to fought the meningitis infection. Dan survived, but with a permanent acquired brain injury.

Our application to the NDIS to support his needs was rejected because although he collapsed seven days before his birthday, he missed the cut-off date for applying. We discovered that under the rules, because Dan was not formally receiving NDIS support before he turned 65, he does not qualify. Officially, he’s only a candidate for aged care.

Dan was admitted to hospital with a meningitis infection just over a week before his 65th birthday.

But Dan is not aged. He has ambitions and aspirations and is enthusiastic about participating and contributing socially. He has resumed voluntary work at a library and looks forward to reading picture books to preps at the local school. He’s a charming, physically fit man, but his short-term memory is damaged beyond repair. He can recall his childhood in detail but can’t remember what he ate for breakfast. He will always need to rely on carers.

The Aged Care Assessment Service determined Dan qualified for a level 4 home care package for individuals with the highest needs, but says it might be a year before one becomes available. In any case, it would not equate to NDIS funding. So, apart from his disability support pension – which is totally inadequate to cover the costs of carers and respite – we have no financial support and are using all Dan’s savings to keep him afloat.

I’m Dan’s primary carer. Despite my age, like all mothers, I’ll fight for justice for my family. I have appealed to my local federal member, my local state member, the Victorian health minister, the NDIS, the NDIA, former minister Bill Shorten, new minister Amanda Rishworth, her deputy Dr Anne Aly, Health Minister Mark Butler, the prime minister, and bureaucrats from a wide range of government departments.

The NDIS legislation is cunningly worded and designed to fend off any appeal or hint of ministerial discretion. Consequently, every response I’ve received has been full of sympathy, but the writer always falls back on the mantra that “the law is the law”.

There must be a considerable file of paperwork by now. The mandarins forward it from department to department and I get older and older. It’s all a bit Yes, Minister. Some of the placating letters answer any question except the ones I’ve asked. Others tell me about the wonderful programs in place or “coming soon”. This family doesn’t have time to wait.

Ros Collins and her son Dan, who have been left on the outer by NDIS rules.

The current crop of ministers will move on, any changes to legislation will probably still be stuck with some committee or review panel, and I will no longer be here to care for my son. Dan’s hopes and dreams, his ambitions and aspirations, will fade away. Given my advanced age, the situation might change suddenly and then Dan will have no option but an aged-care home – “God’s waiting room”.

I always guessed that there might be others suffering similar injustices; now it’s clear that there are. Recent academic research on the issue of NDIS eligibility reveals that older Australians – those over 55 – with a physical disability were substantially less likely to be approved than those under 55. Researchers also found rejections higher among women: for every 1000 applicants, there were 145 more rejections for women and girls compared to men and boys.

Are these the “Labor values” that should be guiding the implementation of the NDIS?

In my distress at our situation, I went back and read former prime minister Julia Gillard’s wonderful speech to the House when she presented the original NDIS legislation in 2012. I decided to seek her advice, and even though she was unable to intervene directly, her office wrote back with compassion:

“I understand how frustrating and disheartening it must be to navigate these systems, especially when the rules seem inflexible and unsympathetic to individual circumstances. Your advocacy for Dan is a powerful reminder of the importance of compassion and fairness in policy implementation.”

I can only hope that others hear this message.

Ros Collins is a Melbourne writer. Her most recent book is Rosa published in 2019 by Hybrid Publishers.

The Morning Edition newsletter is our guide to the day’s most important and interesting stories, analysis and insights. Sign up here.