I go by the pronouns you/your. Or just call me Sam when referring to me.
I am an NDIS participant with extensive physical support needs. I currently have 15 hours of one to one support a day.
I will explain my position on the NDIS Review.
The new bill does not uphold my rights.
Mandatory registration My right to independence, choice, and control depend on my freedom to choose who works for me. Mandatory registration of support workers and other providers would seriously jeopardise this and create a segregated market. I have a lot more about how I feel on this issue in this letter.
I’m terrified of the NDIA and the disability minister of the day having more power over me I’m terrified of the NDIA having more power over me. They have displayed incompetency for many years, an example being they told the builder of my SDA that I have the funding and then they sent me an email 10 days later, saying, “Congratulations, you have the funding.” I felt like a massive afterthought when I should have been the first one to be told. It was my home, my future.
The biggest example of this incompetency is that the NDIA said in a letter that they wouldn’t fund evening support because it wasn’t cost effective. This is so wrong on many levels, everyone else has a life after 8pm, why not me?
I have just been through the AAT and it has given me an even more poor opinion about the NDIA. The NDIA kept arguing things we had already settled on, it was insulting how little time they spent checking where things were at. And they kept asking for more information that if we had known we would have prepared at the start. Instead it drew out for months and months. The AAT was vital for me. And the fact that this bill will give the NDIA more power over us and make the AAT less accessible to us, people with disabilities, is so scary.
And having a politician, with all of their changeability, having any kind of say over what I have a right to, already is unthinkable. My right should be set in stone.
Making us have to give information I had a neurologist who I did not agree with. He was prescribing a treatment that he himself said years ago won’t work and it still didn’t work. I have since got a new neurologist, but I’m scared because this kind of thing will happen again, and has happened to me before and the NDIA will demand this information and believe a professional’s opinion over mine.
My right to a humane interview
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I feel the diagnosis-free admissions of people into the NDIS will result in lots of very invasive and time consuming questions.
My right to choose my own Support Coordinator. Support Coordinators/Navigators being chosen by the government and not driven by the market would lead to having not enough Support Coordinators/Navigators, and no choice for participants.
My right to be adequately supported. I feel 1 support worker to 3 people who need 24 hour support is wrong. I have a lot more about how I feel in this letter.
Mandatory registration could be catastrophic for many people’s lives.
I will write on this now.
If the recommendation to force us to use registered providers is allowed, it will destroy choice and control for participants in the NDIS, and the government’s promise to put us in control of our own lives.
Losing Access To Essential Support
We will no longer have access to the essential supports that we depend on. Many of us have set up support with independent, unregistered providers out of necessity, because there isn’t any other option for many of us. The support companies can not provide services which can cover all of our vital needs - I often had support workers cancel when I was with a company.
I never had the consistency or security until I had all of my support workers independent. I feel safe with them, I never thought I could feel safe again, until I had independent support workers. It was the most wonderful feeling, letting go of the fear. And it wasn’t just fear, many of the registered support workers were dangerous.
I worry that registration will be expensive and/or prohibit people from becoming an independent support worker. And I fear that if this happens, the support companies will be the only way we can get support, and the only way people can become support workers.
My current team of support workers are all unregistered sole traders. I have trained them myself and have full trust in their abilities to work professionally and safely. And most are from my community of artists so they have a better understanding of me and my needs. I fear that under the proposed model I would lose my entire support team.
Purchasing It’s already hard to get the disability consumables without having a registration put on top, and anything could be a disability product.
Support Companies
We could potentially be at the mercy of the support companies and this makes me so angry and scared. I have experienced far more abuse from support companies.
I have experience of living in a nursing home and group home, before coming to the SDA apartment where I am currently living, a place of my own, but I still had my support under a corporation. I have since found it far, far better to find my own 1 on 1 support workers.
I fear being forced to use support corporations again. In my extensive experience they have been worse than useless. They have pushed support workers on me that I did not like. It is horrible orture, to have someone who you don’t like, touching your body. And many of the corporations’ support workers were dangerous. The support corporations went against my wishes, they met with me and said, “yes, yes,” but failed to do anything about their issues. The support corporations even gaslit me and didn’t give me any security of my support.
One corporation on New Years Day weekend 2019, the grade 5 asked me when I was moving to my new place, because they were moving us out of the group home in February to start construction work (to bring it up to the highest level of NDIS funding). This was the first time I was given a date, they had told us about two years before but no date was given and I sent them an email with my concerns, but no reply. I had always felt just fine with the bathroom the way it was and my support needs are quite high. At that time I didn’t have a moving date for my SDA flat. Then the grade 5 said they were starting at the other end of the units so I didn’t have to worry, because they wouldn’t get to mine till June and I would be long gone before then. Then on the 17th of January, the grade 5 told me that they had changed their plans, and I and the person who shared the flat with me would be going to a local motel on the 4th of February. Their excuse was that the builders hadn’t given them any notice, but we, the consumers of their support, should have been their number one priority, and therefore they should have told the builders to wait. I had a meeting with the manager on the 23rd of January and I felt a bit better about it. I would be in a unit of my own, with support workers that I know and I finally got something in writing. On the 25th of January, the manager and another manager came into my room, without invitation, and said they were not sending me to the unit anymore. I would still be going on the 4th of February and would be sent to a home, but they didn’t know where yet. Just that it was in the East. I sent a complaint by email to the service provider about the managers just coming into my room like that, and one of the managers came into my room, uninvited again, to say she was sorry. I couldn’t be bothered saying it again, I was going through so much stress already. With only 3 days notice and 3 days before the 4th of February they sent me to their respite facility. A place even more in need of a renovation, like the light often didn’t work in my room and I was with all new support workers. People again screaming at any time of the day and there was so much other noise at any time. I didn’t get much sleep and I got sick. I had to hear everyone’s business and there was even less privacy. I didn’t even have a proper bed. The bathroom was shared, I was disturbed on the toilet by other clients. And though the managers had said there would be, there wasn’t a buzzer system. I wasn’t given proper notice and I wasn’t given a proper place to stay.
At another corporation, a manager had sent out a group email to all the clients complaining about one of us, saying that they were buzzing too much and that we should only buzz for ‘emergencies.’ Firstly, this was incorrect, as we specifically had a buzzer system that had
different levels of urgency - there was a ‘green’ button for when we needed assistance with anything if we were alone, which was not an emergency. And while they didn’t actually name anyone, there are only 6 of us. So it wasn’t very anonymous and seemed to be attempting to make us all think “is that me?” and/or be suspicious of the others. It made people self-conscious about buzzing, having to doubt whether their need was ‘important’ enough. I asked them to send an apology to all of us clients and when I asked them “did you send it?” they said “I can’t give out that kind of information.” I asked the other clients, and they hadn’t received any apology.
It just made clear the double standards that exist within these organisations.
I never got a straight answer out of management at any of the companies, about anything. Like early on in the pandemic I was asking if they had PPE and could not get a straight answer out of them. I ended up ordering my own PPE, but then I found out they did have PPE.
And their responsiveness to preferences was very lacking. I had an inadequate document about me for about 2 years. First year I didn’t know anything about it, and the second year was them being unresponsive about updating it. Meanwhile, for the second year, this document was the document support workers read before seeing me.
Another area where this support provider frequently failed was around complaints and feedback. The responses from management to complaints or negative feedback from myself and others was inconsistent, inadequate, and untimely. Sometimes complaints and feedback were simply ignored.
I was expressing concerns to the manager at one point, saying a support worker was working too much and showing signs of burnout. The manager accused me of being critical of the workers, and said I was in danger of all the support workers not liking me because of this. The support workers loved me by the way. They were so out of touch with their workers.
Another failure was clients not being properly consulted or involved in the process of interviewing and hiring our support workers. They told us at the beginning that we would be involved in this. They did for a little while, but quickly stopped consulting us.
The management literally cried on me on a number of occasions, they would say, “we are going to get better,” but they never did.
Just last week the current shared support company in my building lied to me about one of their employees, saying they were demoting them because I gave some feedback. I was very upset because I didn’t want them to be demoted. And I got back “Sorry for the confusion, their availability didn’t fit.” They were trying to gain points with me by being dishonest, saying they were demoting them when they weren’t.
And this is only a few examples.
Support Costing More
And with a company, my support will cost more and therefore not all of my hours will be covered. The shared support company in my building has gone up in price and the NDIA won’t cover it. The additional money has to come out of my one on one support budget and I only can afford it by employing my one on one independent support workers directly. So I will be in danger of not having enough support.
Less pay for the support workers
Support companies charge me more per hour to cover overheads but pay the workers less than I do, which really isn’t fair as companies don’t pay much, and many support workers can’t live off that without working unhealthy amounts of hours. This also increases the risk of harm to us and means that it’s hard to keep good workers because they are more likely to leave this line of work.
Many support workers will not work for a company
Many independent support workers have been with support companies and found that they couldn’t do their job well because of all the unnecessary and inhumane hoops, and therefore wouldn’t want to go back.
Registration will not work
I can’t see why mandatory registration is necessary, and fail to see how it will successfully stop and prevent abuse. I have had so much abuse from support companies - registered providers. All the government will be doing is making it harder for us, people with disabilities.
And I personally feel infantilised and unfairly targeted. Why do we need more red tape, the laws are there already. We need to be exercising the laws more and have more access to education, of how not to abuse and what abuse is. Not have a piece of paper that I can see will do nothing. I have looked it up and you don’t have to do anything to be registered except pay money. And if you did make it free it would still be useless and infantilising. A smokescreen for the government to have more control of our lives. We need more community and this will stop community from forming around us. People need money and we need support, simple as that. As a current participant and someone who has dealt with many registered and unregistered service providers throughout my life, I feel in a good position to judge.
Abuse I have suffered from companies
It wouldn’t make things safer or “better”. I have, by far, suffered more abuse and neglect at the hands of support companies - registered providers. I spoke about this in depth during my testimonies for the royal commission, writings, and I have a book out soon.
They’re taking away our right to choose who supports us.
I thought, finally, my future was ok… But now I am not so sure.
**This is an abridged chapter of my new book.
Memories.
Trigger warning: institutionalised abuse and neglect, queer phobia and sexual abuse.
“I’m not going to change your pad if you’re going to wet it again.”
They saw it as being efficient, but I saw it as them taking my say away. I later found out it was abuse, but so much of it was abuse.
A support worker was putting my catheter leg bag strap on, and I need it to be a certain tightness. Another support worker was putting my bra on and I was going, “Wait, the bra straps have come loose.” The one putting my leg bag on said in an angry voice, “You need to concentrate on me.”
All the times my catheter bag was damaged because they were in a hurry.
All the times they’d pull my catheter because they were in a hurry.
A support worker often flushed the toilet when I was still sitting on it, the water splashing my bum. They would just giggle and go, “Oops, sorry, I didn’t want to see it.” Very humiliating for me.
All of the advice I shouldn’t have listened to. A support worker said, “Once you have the catheter put in, you can’t change your mind.” An internet search came up with how easy it is to go back. You can take it out and the hole will close up in minutes.
And I had to wait for support so, so much.
Once, yet again answering my buzzer after a long time, one of the support workers said, “I would hate to be dependent.” The other support worker agreed with them. “Yeah, I would be a total bitch.”
I had one support worker who sweated so much they would drip drops on me. They were using their gloved hands to mop the sweat up with a towel, and then continue supporting me with the same gloves. I said, “That is not hygienic.” They replied, “Yes it is,” and held up the dripping sweat towel.
A support worker said, “That’s so gay,” when talking about something bad.
I used to say I was bi. Then a support worker said I was greedy. I laughed it off, but felt very weird. It was only later that I found out that was queerphobic.
One would slap me on the bum, and would say, “It’s not assault if you like it.”
They wouldn’t dry my groin properly, so I ended up with a skin infection.
Support workers telling me nearly all people with disabilities are bad.
And support workers and nurses would talk about everybody else to me, everyone’s business. Mainly about how annoying the other clients were.
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Then the support workers would talk about the neglect of other clients. Neglect by other support workers.
I asked a support worker to refill my water bag and they didn’t put the lid on straight, and water leaked everywhere. And then they said, “Look, it’s stopped leaking.” The bag was empty.
I got day-old urine flicked onto me because my night bag hadn’t been cleaned again, and the person supporting me to go to bed didn’t know what they were doing.
Support workers leaning on my wheelchair, over me. In effect pinning me down.
If I were to move, they would be put off balance and then there was a possibility they’d get angry at me.
They often didn’t support me right, like didn’t set me on the bed right, and one blew up at me when I asked them to see how it was done by a new support worker. They were so scary.
Nurses and support workers would do things all wrong, insult me and refuse to give me my speech device. Then I would cry sometimes and they would give me my speech device and say, “Just type,” but I wouldn’t know where to start, because they had done so many things wrong.
Then they say you’re being difficult. And sometimes they would just leave me and support someone else.
You go quiet, but still the aggression is coming off them in waves.
They would find every little bit of you wrong, till there is nothing left.
A support worker I had was showing the first signs of dementia. They did things that were illogical and I was scared of them doing something really dangerous. They had really old clothes, old polyester, peeled and stained. They would stare off into space for ages and suddenly change direction or they would say things in a loud voice. After a particularly long morning of them forgetting everything, they said they were going to clean the bathroom and then 2 seconds later they left. I looked at the bathroom and there were bits of my poo still on the floor.
They are still working.
I complained about it so much, but nothing happened.
Those were all registered support workers.
End of abridged chapter.
Most of these abuse incidents were witnessed, but nothing happened because no one wanted to deal with any trouble.
I always thought I was safer with a company, but it simply isn’t the case.
Now I will talk about the proposal to fund 1 support worker to 3 people who need 24 hour support.
Bill Shorten said this model will be for most, with a few exceptions.
1 to 3 isn’t 24 hour support because you are left waiting so much. Again a flood of awful memories of waiting an hour or 2 for support. Waiting with a wet pad, wating to go to bed, waiting to get out of bed, waiting on the toilet, waiting to get dressed and waiting in vain so many times for so many things.
Rushed support Again when you get support it’s often rushed and it is unsafe, because it is rushed. And often the support workers are rude because they feel rushed.
Potential for more fraud And there’s potential for more fraud, because you don’t know what they’re doing when they are not with you and my room was next to the office and often I could hear them chatting away when people were buzzing. And once I asked for help about something incidental and the support worker said I have study to do.
We should not be made to live together Bill Shorten said that they are hoping to break the isolation by bringing us together.
Sounds nice, but it doesn’t work and it feels like an old excuse, to save money.
I felt so lonely and stifled in all crowded living environments and it’s the world that isolates us.
They put us together with all of our traumas and expect us to get along.
Believe me I have tried and we just don’t.
We are not all connected by our disabilities because we are all different and we are different people.
And we are competing for the same inadequate support.
I couldn’t decorate my space, I couldn’t have the temperature I wanted, horrible smells, both faecal and perfumes, I couldn’t get any quiet time, even at night and there was often screaming.
Those of us requiring 24 hour support can’t make accommodations for each other like other people living together can because we are so disabled. So the argument that people with disabilities must still live together like most of society is horrifying.
And we will not be made to live with everyone, we will be made to live with other people with disabilities still, causing more segregation.
And people who live in share houses generally spend years stepping through spaces until one feels right. We don’t have this option. I spent 5 years in a horrible situation that anyone else would have just moved out of.
No Choice of support workers in the group home. I wasn’t able to choose the people supporting me in the group home and may not be able to again. This takes away an important part of the relationship. I wasn’t able to simply say I didn’t want someone supporting me and this felt like it set off a sequence of entitled beliefs in the support workers’ mind so that they’re not as conscious about making you content in the relationship or putting you first. And it is a pretty important relationship to get right, because in most cases they are doing really intimate support. This I found reinforced abusive behaviour in support workers. This is not healthy for both support workers and clients. There is often little time to build a working relationship with a support worker in a group home environment because of the demand.
More Behaviour There is little time for correction in group home support and often when I gave feedback, it was met with resistance. Often there was more than one support worker involved so then there were a number of people resisting me, and it felt like they would form a group against my feedback.
I wish that all the support workers in the group home could have given me the benefit of the doubt when interacting with me. Most of them were good, but sometimes I have been misinterpreted as being hostile when giving feedback, with my techno voice or Dystonic body language. It hasn’t been nice and I’m actually really shy of anger. At times I was left quite shaken because support workers would raise their voices in response to me giving them feedback. For example a support worker didn’t put my camelbak lid on right and when I tried to tell them to fix it they said they have a camelbak so they know how to do it, but it still leaked and then when I told them they said angrily that I was making this out to be bigger than it needs to be. I have been called rude, impatient and fussy. A lot of the time I just shut down. If I showed anger I would be labeled as “the angry one” which would impact the support I received in the group home.
Constant micro aggressions day after day do add up. It’s a tone of voice and a tone of voice is so hard to explain, but behind that tone is a misunderstanding of you, a misjudgment of you. And that misjudgment gets repeated day after day and can get repeated by others. And this
misjudgment can become someone’s conclusion about you, which affects their behavior toward you and they end up not treating you equally.
I did complain to the management lots of times. They were always saying it is great to complain, but when I did it took a whole lot of explaining why I was complaining because what I was complaining about was not visible to many people. I felt that the staff weren’t taking my complaints seriously. Any mention by me of needing more workers for the group home so that the workers weren’t so rushed was met with a no.
One person in management at the service provider convinced me that they would fix it by talking to all of the support workers, but then they disappeared without doing anything. Management seemed to put their heads in the sand.
Hospital/rehabilitation, nursing home/rehabilitation and group home, they would all talk about the other residents in front of me and to me and often it was negative stuff and private stuff. I eventually said please don’t talk about others in my presence anymore. This was because I realized it was impacting my relationships with the other residents. Most of the support workers did listen to me. But it was also a symptom of the support structure, they were flying in and out of different resident’s rooms and had to talk to each other about what was going on, they needed time and space for debriefing and handover.
So often in all the shared support environments I have lived in the support workers would often leave me in the middle of doing my support routine, they could be called away at any time. It was out of sheer necessity of the moment, there was someone in need of more support. If it was just a couple of times I wouldn’t mind but it was continuous.
I can live now I now live in my SDA apartment, and while not perfect, it is meeting my needs.
I now have 15 hours of one on one support a day.
Here, I have the space, support and capacity to work, far more than I did in a group home.
With more support I can see my friends with disabilities without fear of needing anything, and I can see friends who are able bodied without having to lean on them too much. My needs are considerable. And I have noticed my relationships have become stronger.
And I have been able to leave some relationships that were damaging me.
I am able to have friends over in private and without them being cooked by the heating.
I now have proper support
You could say I have become ‘dependent’ on my team of support workers, but the assumption that that is a bad thing is very harmful. I will always need support. It should have been that way
from the beginning. My body was suffering from continuously having new support workers, because they often didn’t know how to support me.
Having proper support has enabled me to use a new wheelchair. The new wheelchair is very important for my body, my spine, but it has made me a lot more dependent on support. Having proper support means I’m able to take care of my health, food, sleep, exercise and appointments.
And I have become a Ni Ni, something I love so much, and no way my sister could have supported me and 2 babies at the same time when I visit or when they visit me. So I wouldn’t get to see them as much.
Summing up I find the new recommendations to be paternalistic and just wrong.
Can you please make sure they don’t force me, all of us, to endure invasive and dehumanising assessments by people who don’t know us; to lose our choice of Support Coordinator, whose impact on us makes a big difference when we are able to build good understanding and rapport; to be forced to use registered providers; and to be forced into group homes again.
This is not person centered support, the recommendation forcing us back into group homes proves that. The way they are talking about funding, sounds just like the old way of doing things and the old way was so neglectful of my needs.
What is happening to people is not ok, but this bill isn’t going to fix it and in fact it will make it worse.
It’s very traumatic having to defend myself and relive it all again. The reason I wrote a book was so I wouldn’t have to speak of my experiences again. But here I am writing about it, again.
I want a meeting.