Submission 1728
Submission on the NDIS Amendment Bill
I am a: X Disabled person X Family member X Healthcare worker
My main concern about this Bill is: I am a disabled person who also works in public health. I have deep connection to this issue, not only as someone with multiple disabilities but as someone who works with vulnerable and disabled people and hear their stories every day. I am not currently a NDIS participant, however have been strongly encouraged by my medical team and people close to me to apply for access.
Taking access to supports away from disabled people limits their quality of life, and it shuns them from society. Taking participants NDIS away from them feels like the government saying we are not good enough to be in this world so we will ignore that you are.
This Bill may affect me / people I support because:
- Reduced support for disabled people also reduces accessibility for disabled people. The world wasn’t built for disabled people, if it was, we wouldn’t need support and accessibility.
- Reduction or removal of support will lead to disabled people not being able to access basic things such as medical appointments, completing grocery shopping, making basic meals, hygiene tasks, and basic survival. This means that family of disabled people are forced to take on a carer role, and this is only if the person has family who are willing and able bodied.
- It will also lead to disabled people not being able to receive the care that they need, therefore worsening their conditions. If they are currently working, they won’t be able to anymore.
- Not having the means to access support and care needed also affects the providers, who without having disabled people to support and provide to will likely take them out of the workforce.
One example from my experience (if you can): I have been seeing doctors my whole life for symptoms nobody could explain, constantly being told that I’m attention seeking, I’m a woman and just have to get used to it, or that I’m a young and healthy woman, I couldn’t possibly have anything wrong with me and it’s all in my head. I have been employed full time since I was 15. I have worked in healthcare for 2.5 years doing administrative support where I have heard many people’s stories. Before this, I was a baker for 8 years. My life goal was to have my own cake shop or home bakery, until I started fainting at work multiple times a week and was so sick, I was throwing up in bins and being sent home because I couldn’t work. After a few months of testing, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). It was around this time I was also diagnosed with ASD and ADHD, and diagnosed with Endometriosis 3 years prior to that.
This was the point that I had to admit to myself that I was never going to have my dream of my own little bakery, because standing and being in warm environments was a huge trigger. But I can still work, so that’s okay right? I can find another job and relearn everything. I got a job working casually at a hospital doing administration. I learnt a lot, not only about the job but listening to other people’s experiences, people who are disabled.
Submission 1728
I started thinking about how my experienced feel so similar – but I couldn’t possibly be disabled, right? I’m not in a wheelchair, I have a job, the world doesn’t look at me and perceived me as disabled. But I am.
As the next 2 years go by, my health continues to decline. I can’t stand at all without being dizzy, I’m struggling to even sit upright at my desk, I have constant headaches and migraines and losing my vision. Everything hurts, I have fainted so many times and had so many head injuries that I have lost count. I’m struggling to exist and seeing doctor after doctor; nobody seems to be able to help me.
I don’t know how much longer I can go on like this. If I can’t work, I lose everything. I lose the house my husband and I worked so hard to buy, because how are we supposed to afford the repayments. If we can’t afford our mortgage repayments, we can’t afford rent. Where do we live? I can’t get the disability support pension because it is partner income tested and my husband works. I paid nearly $17k in income tax last year and there is no support when I need it. Would it be better if I ended it all? Stopped being a burden to everyone?
No, no, you need to stop thinking like that. I do more research, look further out for more doctors who might know something, anything, that could help me. I find a doctor over an hour away who is POTS aware and taking new patients. This is my last hope. I see the doctor, and finally a doctor who didn’t dismiss me, who believed me, and knew what was wrong. Now you’re probably wondering, what was it, what was causing everything happening to me? I have Ehlers-Danlos Syndrome, a rare inherited genetic connective tissue disorder. Currently I am diagnosed as hypermobile type however classical or classic-like types are suspected. The genetic test to check is $700 with no Medicare rebate and in this economy when I’m already struggling, I can’t afford that.
So, I have hypermobile Ehlers-Danlos Syndrome. This opens up many doors for rarer conditions nobody has thought to look at before, and guess who has multiple? If you guessed me, you would be right. But the great news is, now we know what the issues are, there are things that can help. What a relief to hear, except it isn’t, because it is all incredibly expensive.
My doctor recommends that I apply for the NDIS, something I never even considered I could do, and I feel so relieved. Because in the last few weeks of getting these tests done and finding these results, my mum has been helping me financially, but she can’t help me forever. She is 60 herself, with heart, lung and kidney disease and working towards retirement. And then the government announces it is cutting funding to the NDIS and more than 160,000 participants who are currently receiving NDIS will lose it.
So, we go back to square one. If I don’t get accepted for the NDIS, I can’t afford the therapies needed, which means I continue to decline. I continue to decline, not only do I have to stop working because I’m not physically able to, but we lose our home because my husband can’t afford our mortgage and utilities on his own, we did the math. We would have to rely on family to live with, except they also don’t have any room for us. So, what now? Homelessness? Do we try and get government housing?
You might be thinking, what is your point?
My point is, supporting disabled people is a lot deeper than the government and this bill is making it out to be. Disabled people go through so much already, just to even get answers,
Submission 1728
and then they have to jump through hoop after hoop to gain access to support, and now that support is even harder to gain access to.
What I want the committee to understand is: Removing support for disabled people doesn’t just affect disabled people. It affects their families and friends, and it affects the providers who support them. The NDIS returns $2.25 to the economy for every $1 put into it. The NDIS keeps people in the workforce, and helps people get into the workforce. The NDIS gives disabled people a reason to live when the world tells them that they are worthless to society. It provides them with the support to show that they are just as skilled and worthy as other able-bodied people.
Yes, there is fraud in the NDIS, but the participants, the disabled people who need these supports, should not be the ones punished. Instead of cutting funding to the NDIS and removing participants, investigate the fraud and do something about that.
My position on this Bill:
- X I do not support it
- X I have serious concerns
Because: I do not support this bill, and believe it is punishing disabled people who did not choose to be disabled and genuinely need NDIS supports instead of investigating fraud from providers. I have serious concerns because the way the government has presented this bill to the general public to gain support has vilified disabled people more than they already are.