Lived experience of the cruel NDIS 65 age limit

Article published 22 March 2023

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Lived experience of the cruel NDIS 65 age limit

A reader wrote to CPSA about the cruelty of the NDIS ban on people over 65. Once you reach 65, you can no longer apply no matter what.

NDIS class action lawsuit

CPSA has previously written about the upcoming class action lawsuit for people over 65 with disabilities who are unable to receive National Disability Insurance Scheme (NDIS) funding.

To apply for the NDIS you need to be under 65. Once you reach 65, you can stay on the NDIS if you have it.

If you don’t have it, it’s too late: you can’t apply.  At that point, regardless of your disability, aged care is all you can get.

Lived experience

A reader wrote to CPSA about the cruel consequences of that rule. In 2001, when she was not yet 65, she was diagnosed with hydrocephalus. This is a neurological disorder where cerebrospinal fluid (CSF) puts harmful pressure on the brain. CSF flows in and around the brain to help cushion it from injury.

Here is what she wrote:

I was diagnosed with hydrocephalus in 2001 when I was 47. I was suffering from hydrocephalus for years prior to my diagnosis and by the time I received surgery I had had a brain injury.

I probably should have accessed my superannuation insurance then, but I was too brain-injured to think about that.

I had no support, and I was the mother of a small child (she was 5 at the time). I was trying to escape a domestic violence situation and protect my daughter. I was put on a Disability Support Pension, and I have been on that ever since.

In 2009, the surgery was repeated as my brain was again traumatised. I have only ever been able to work part time since 2001.

I look reasonably normal as my problem is neurological. It affects my balance, my coordination, ability to react appropriately to situations, my ability to express myself. I have headaches and memory issues, vision issues and my vertigo is at times debilitating. All of these symptoms are with me daily.

Most people who have brain injuries experience extreme anxiety. We don’t know how much or little brain pressure we will have on any given day. Headaches result from too high or too low CSF in our brain ventricles. Many of us use postural changes to assist with pressure. Stressful situations resulting in anxiety attacks are all too common.

I am 69 now, and I am on a Home Care Package, but I have so much trouble dealing with the providers. They have no idea about neurological conditions. This is so frustrating.

Apart from having providers who are educated about brain injuries, all that I would like to see from this process is a change of legislation with regards to older people having access to the NDIS.

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