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.
