Submission 1581

To those considering cuts to the NDIS

I am writing to you because several years ago, I was in the Canberra Hospital – I was there for almost 3 months, with 2 weeks at Bruce Hospital to add up to a total of 3 months hospitalised. No, this is not a complaint about that time, though I do not wish to ever go back to hospital. They were actually very kind to me. Even when I was getting quite agitated by the 24 hour watch they had me on, because I was suicidal. There’s nothing like being watched when you’re doing a poo to make you realise how bad things have gotten.

I still am suicidal.

Back then, it was my cat, and knowing he had no other place to go, that stopped me from killing myself. He has since died of lung cancer, and I still mourn the creature that kept me alive for so many years.

Now it is the fact that I do not want my carers to find my body – on a bad day. On a good day, it’s because I don’t want to kill myself that day, because I am looking forward to seeing my carers, or my therapist has helped me have hope for the future. I have never before had hope for my future. I have never even believed that I might have a life worth living.

It has always been the most tenuous of luck that has kept me alive this long. My physical and mental health have suffered so severely that I have lung and heart failure, and my therapist often donates free hours to give me extra therapy. When I was in hospital for 3 months, a therapist came to see me 3 times a week. But the NDIS does not fund therapy like this, even if it is desperately needed, as is the case with me.

For several years I have been in hospital for multiple weeks every year. Quite an expense for the Territory to swallow. And don’t worry, I feel like a burden, like a negative dollar sign, instead of like a human being, most of the time. My mental health, politics and media have made sure of that.

But I have done nothing to deserve feeling like this – so my therapist says. I have committed no crime that requires punishment. Indeed, extremely serious crimes were committed against me as a child – crimes so serious that they have left their stain upon my psyche and basically destroyed my life. I have been diagnosed with Complex Post Traumatic Stress Disorder. A mental illness that re-writes the brain, and has left me with severe depression, anxiety, various phobias, a sense of hopeless and helplessness, suicidal ideation, emotional flashbacks, a deep-seated sense of worthlessness, difficulty maintaining relationships, self-harming habits, poor health outcomes, including lung issues, digestive issues, headaches, obesity, dizziness, chronic fatigue etc.

Submission 1581

All of this because before I had even reached puberty, a male family member, repeatedly, over several years, could not keep his penis to himself. And when I tried to tell my other family members about it – they did not believe me. If that is hard to read, please know that it is much harder going through it. I barely scraped through high school, despite being of ‘above average intelligence’, I flunked out of university on my last subject, though I was a HD student until I could no longer handle the pressure, 2 failed marriages, failing at every job, even if I was over-qualified for it, the majority of my friendships ending, leaving me extremely isolated and very alone and lonely. It is fair to say that I have been let down by people in my life, and fallen through just about every ack. It was social workers who picked me up, and sorted out public housing and the Disability Support Pension, and yes – the NDIS. The thing I am writing to you about. Because I am about to be failed again – by a government I voted for.

For the next part of my letter, I would ask you to remember the Covid lockdowns. How everyone was so isolated, how they complained about desperately wanting to go outside and touch grass, or get a haircut – something I have not had for over three years. Everyone’s mental health suffered during Covid.

And for many disabled people, myself included - that level of isolation, and inability to leave the house was just business as usual. But whereas for the rest of Australia it was weeks, perhaps months, that they had to endure this. For me, and other disabled people, it is years, a lifetime. During Covid, I started to have a single carer come into my home, to clean. Just once a week. Before her, I could go weeks at a time without saying a word out loud, and then that word would most likely be to my cat. The ACT government started paying for me to do therapy, but that was only a short term thing, and they were trying to move me onto the NDIS. At first I got a very minimal plan, but all the experts around me (OT, GP, specialists, psychiatrist, psychologist, etc) believed I needed more. So the battle to get a better plan began. It was a few years before I got the plan I am on now. Which is almost everything I need.

It’s a three year plan that will end in April 2027. I’m scared of that day.

Right now, I have a remarkable team of carers surrounding me, I get weekly therapy with an incredible therapist – that I have been seeing for nearly three years and that continuity of care is really showing results now. The carers really took the pressure off me so I could start to breathe again, and heal from my trauma. I like to think I can heal enough to one day actually hold a job properly and pay taxes that will help other disabled people. Most of my specialists say that this is unlikely, but I actually have dreams for my future now – a first for me – so I am trying to hold onto that thought.

It is the current level of carer support I have that has meant that in the last few years (since I have been on this 3 year plan) I have not had one hospital stay. It has also

Submission 1581

allowed me to start thinking of a future, to dare to dream of having a life worth living, to have the first days of my life where I have not wanted to kill myself. I leave the house for things other than medical appointments, despite having severe agoraphobia, because of therapist and carer support – it’s usually visits to the park to have a walk. Something that has helped my heart and lung health - so that my test results are showing improvements in my failing organs. I occasionally cook meals for myself – something I have not done in over a decade.

My life is not perfect with these supports. My house is still a mess, but at least it’s clean. My mental and physical health are still wrecked, but I am seeing improvements. I still can’t take care of myself properly, but I am starting to take small steps towards getting there. I’m still stuck in my house 99% of the time, but now I do go out about once a month for something that is not medical related. I still want to kill myself most of the time, but sometimes I don’t and I am even starting to see a future for myself. The NDIS hasn’t fixed all my problems, but it has given me the tools to start to try to fix things, and a chance to have a life worth living. And with time and effort I believe I truly can have a life worth living, probably with less supports than I currently have, but probably never with none – ideally the specialists and experts around me will help me slowly lessen supports over time.

But it seems like this government believes that disabled people should not be allowed to have the same things in this life as every other Australian. Why should I not be allowed to have a life worth living? I am not a criminal who deserves to be locked inside the walls of my apartment to live in isolation, fear and misery. I am just a disabled woman, literally begging her MP to think of all the disabled lives that cuts to the NDIS will affect. How many lives will be made not worth living.

Finally I would like to remind you that there are over 700,000 people on the Disability Support Pension. Each and every single one of us had to go through rigorous tests to prove that we had exhausted all other possibilities before being given this pittance of an allowance. I had to take medications that experts said would not help me and would only make my mental health worse, to prove that I had tried all avenues of treatment, simply because that medication had helped other people, with similar, but not the same condition as me. I took the medication, it made me worse, it did not help, I was finally granted DSP, after over a year of fighting for it. This leads me to 2 issues: 1 – why should I have to go through all of that again to prove I need the NDIS? And 2 - Why did the government not expect that every single recipient of the DSP would also need the NDIS? It is disingenuous at best to say that the NDIS was never meant to have over 700,000 people on it. You should have budgeted for over a million participants – for all the DSP recipients and for all those that are not eligible for DSP but are still disabled. The fact that the NDIS was not properly costed in the first place is not disabled people’s fault and we should not be the ones to burden the cost of that mistake.

Submission 1581

Pushing through Draconian ASIO compulsory questioning powers, paying for foreign armies to set up camp on Australian soil, supporting Trump’s wars and spending billions on war machines, while Australians go without cost of living relief, housing, welfare increases, and proper NDIS support, are policies I would have expected more of a Liberal government and not from the supposedly more moderate Labour government - these are not the actions of the party I voted for. Nor are they what Labour is supposed to stand for - worker’s right, unions and a fair go for all Australians. ALL Australians.

They feel more like a slow slide into fascism. And I must ask all Labour MPs- do all of these policies actually align with your personal morals? Are these the things you truly believe in? Are these the things you wanted when you joined the Labour party, rather than the Liberal party?

There’s this old saying going about, it’s attributed to all sorts of people, and its wording changes according to the purpose it’s being used for. But it goes something like this - you can judge the worth of a society by the way it treats its most vulnerable members.

Australia’s worth is being tested right now. I fear it shall come up wanting.