Submission 967
Do not make cuts to the NDIS.
It will cost the government and every person far more in the long run. More importantly, it will impact me and my fellow people with disabilities significantly. I am considerably concerned that the reductions in the Bill will leave participants with a lot less funding and no choice.
I am a high support needs power wheelchair user and use a speech device to communicate.
I have no family I can rely on for my support needs.
NO to mandatory registration of support workers:
I have experienced so much discrimination, infantilisation, neglect and abuse from a number of registered support providers, leaving me with considerable trauma.
I have now built a good life for myself through NDIS funding and most importantly the choice in how to use funds to best support my needs, by building my own team of unregistered support workers that come from my community. I am queer and I used to face constant discrimination from registered support providers because of this, causing me to feel unseen and unsafe in my own home.
But what I found more detrimental to my mental and physical health was the infantilisation, neglect and abuse. The registered support providers did this through: improper induction of their workers, poor communication across the board and poor treatment of their workers which leads to poor treatment of us. It’s awful because this treatment makes you feel not human anymore. All of this led to a high turnover of workers which in turn led to its own problems. I was subjected to new people almost on a daily basis, often not knowing my routines at all and, most of the time, they were hugely incompetent. And daily and even hourly, this uncertainty filled me with so much anxiety, it was so bad for my mental health. Also they often hurt me as they did not know how to handle my body. They gave me no choice in who supported me. It’s horrible torture having someone you didn’t choose touching your body. Every registered support provider has done this to me. And I was gaslit so often by the support providers.
It was only when I could get my own unregistered support workers that I was free from this, the discrimination, infantilisation, neglect and abuse. My team of support workers are all unregistered sole traders, and because of this I have the ability to carefully choose who supports me.
Submission 967
I was told registration cost for support workers would come down in price, therefore independent support workers could afford to be registered, but it hasn’t. The current price of registration is outrageously overpriced. Where is the money going? Who is it for? There is no real transparency surrounding the high cost of registration.
I’m so afraid of losing my team due to mandatory registration.
I strongly disagree with the idea of people’s access to support being blocked due to not wanting medical intervention. People should have the right to choose.
I have dystonia and I had an operation to alleviate my symptoms. I didn’t need to have the operation, but I felt I had to because of society. As a result I had a massive stroke during the operation. I would hate for others to feel the pressure from the system to undergo treatment that they don’t want in order to get support from NDIS.
Moreover I have been recommended to receive medical botox 4 times a year, but the government only funds 2 treatments a year, I cannot afford to pay for the other 2. Although receiving the recommended medical botox 4 times a year would improve my quality of life significantly, because of my disabilities I would still require the same amount of support from my support workers. However I would not require more support hours for longer as I get older if I did receive the recommended 4 doses.
No to cuts in capacity building:
I have finally got an awesome Occupational Therapist and finally getting on top of so many things. I would hate to lose them.
I have a really great physio who understands dystonia well and if I didn’t have them my dystonia would get worse and the neurologist wouldn’t know as well where to put the Botox in my muscles.
I have a great Support Coordinator who helps me to understand my funding and how best to use it, which is vital as I’m dyslexic.
No to block funding:
Are we going back to the bad old days where people have to please a third party in order to get the support we need?
Submission 967
I am greatly concerned that people will have their supports cut below what is reasonable and necessary:I am concerned that thereductions in the Bill will leave participants with less funding than the total costs of their reasonable and necessary supports.
The hours I have are greatly needed, as my support needs are high. Now I’m able to have my home cleaned properly, I am able to keep myself clean and healthy, I eat properly now, communicate properly and I can be part of my community. People used to ask ‘Where is your carer?’ ‘Where is your support worker?’ ‘Are you ok?’ As they saw me struggle. And now the government wants to take 30% to 50% of“social and community participation support” away from us.
“Social and community participation support” isn’tjust for fun stuff. I use it for exercise, communication, medical and therapy appointments, grocery shopping, cooking and life administration. So what if it’s a nice day and I have the time and decide to go to a cafe or meet a friend at a cafe, doesn’t everyone? We just need support to do so. I can’t go out on my own any more, so I would practically be under house arrest.
My health and quality of life would greatly suffer. Even if I’m not affected by these cuts I’m afraid of many other people with disabilities having to suffer like I suffered.
It is untenable that the government would suggest such a thing.
Heaps of people want to support me for free, but they can’t because they have to earn money to live in this society and they don’t have time to spare. And it is work, not just fun, to support me on a social outing. I hope my support workers enjoy their work with me, but it is work. I rely on my support workers so much. If I were to have to rely on free labour, the people supporting me would have their rest and social time impacted. And most of my friends are living with disabilities so can’t help me in these ways. This system would be entirely unsustainable.
The carer pension isn’t enough to live on. And, I wouldn’t want any one person tied to me again. Nor do I have any one person available, if I did want that.
So, support workers need money to live, in order to support me.
NDIS has been life changing. I have been able to do a range of exciting things, and take on new opportunities.
Submission 967
Prior to my experience with NDIS I went out on my own, but I found it to be bad for my health. At the time, I could empty my catheter bag myself, but couldn’t open many of the ‘accessible’ toilets because they had heavy doors on them. When I did get in, I wasn’t able to lock the door, putting me in considerable danger. I no longer have the ability to empty my catheter bag without a support worker.
Today, I am able to drink more water knowing my catheter bag will be emptied by support workers, keeping me healthy.
I am able to go to the toilet when I need to, helping me be less constipated, which in turn helps me to have less bladder cramps and bypassing.
My groin doesn’t get nearly as sore, because support is there to change my pad right away when I bypass.
When I’m out and about I need support if I get too hot or too cold, to take layers of clothes on and off.
I’m able to eat and drink a wide variety of foods and beverages with support.
I am able to wash my hands in public with support workers, keeping me safe from germs.
I’m able to mask in public with the help of support workers, again, keeping me safe and healthy. I find it harder to cough now and might get pneumonia if I catch something.
I have a speech disability and I use a speech device to communicate, but 80% of people don’t recognise my typing as talking. Communication is safety. It isn’t safe if I can’t communicate. Now, with support workers that know me well, I am able to be understood because they can see that I have something to say and they can alert other people. Also, typing is hard for me so it helps to have a support worker who knows me, that can relay information for me. In developing sustainable working relationships with each of my support workers, I have trained them to not put words in my mouth and check with me about all communication. This support with communication is essential for my participation in the world.I am understoodby so many more people, including very important people in my life, from my neurologist to my sister, as I have someone to support me with communication. It’s so hard when you are non-verbal and dyslexic and other people keep getting distracted during conversation. It really helps to have a support worker there keeping things on track, and helping me when I get stuck on certain words.
Submission 967
Having support with communication is also important to alleviate ableism. My support workers can say stop when random people are ableist like: people trying to touch me, speaking over me, or speaking down to me. This lack of consent happens a lot. It’s essential for me to have an advocate.
I have to wear glasses now and I need support workers to clean them regularly. If they can not be cleaned I can not see clearly, further disabling me.
I require my support workers to administer pain medication for me, without them I would not be able to access the medication alone.
I used to pay for things by giving people, often strangers, direct access to my wallet which was very dangerous. I am so much safer with trusted support workers now.
So many of my bags and their contents got destroyed in doorways because the only way I could access them was if they were hanging on the side of my wheelchair. I have my bags on the back of my wheelchair now and my support workers can get it for me.
And what about when something goes wrong with my power wheelchair? Twice my power wheelchair stalled and broke down in the basking hot sun and no one walked by to help me.
I am able to stay on top of my emails with support. I used to get so tired and they would just pile up, and I would often miss important emails.
My catheter site is always kept clean and dry, and my support workers are able to clear the tube of crystal build-up.
My routines can be done more slowly with the right amount of support hours, as there is less rushing, and more focus on doing things safely.
Things are just so much slower for me, I have tried so hard to speed up, but I have ended up getting sick and more traumatised. I take time to dress, shower, eat, speak, go out, poo, wipe. Anything really.
My mental health has improved with the extra support because I have more time and energy to spend on the things that are important to me, like art, writing and gardening.
Submission 967
I experience less fear and anxiety and feel safer, because I know who will be supporting me each day, and that they know how to support me well.
Without adequate support my basic human rights were not being met.
Then, there is my important work as a political artist and advocate. I’m doing good work to bring awareness of disability into our community and I fear this will be greatly reduced if I have a 30% to 50% reduction in “social and community participation supports”.
I’m so afraid of losing my support worker team due to reductions and cuts.
Hospitals will be over loaded:
Before the NDIS I was stuck in hospital, when I didn’t need to be. Taking up a bed that someone else needed. All I needed was to be properly funded to go home and back out into the community. There will be an increase in injuries because of a lack of support due to the NDIS cuts.
Putting more pressure on our hospitals.
There will be significantly more mental health breakdowns because of lack of support, putting further pressure on hospitals.
With these cuts to our NDIS our hospitals will feel the immense impact.
It may seem like hospitals are winning with this budget, but really they are not.
And worst of all, we can not appeal the NDIA decisions.
All we can do is be subjected to another assessment and hope it will be different.
I have been handed a plan that didn’t make any sense before and had to go to the AAT and it was very vital to my life.
But I shouldn’t be interrogated for the things I need. I shouldn’t be interrogated, because it’s a form of torture. We need trauma informed assessments.
Yes they have to stop the fraud, but they are not going do that by cutting our lives and taking away our right to choose who touches our bodies.
Submission 967
Many will die and yet more will live out our lives in torture directly because of these cuts.
I implore you to stop the cuts to the NDIS and stop mandatory registration.
Sam Petersen