My name is . I hope you can bear with me long enough to read this until the end, because it is heartfelt. When someone has a disability, that person and their family deals with that basically 90% of their time. Not because they want to, but because at the moment there is such an inconsistency and not the reliability that we all need to just go on with our lives. There are constant fears and worries being thrown at people with disabilities and their families by unnecessary bureaucracy and constant unsettling changes to how the NDIS works.
I am writing this from the perspective of a family carer. Twelve years ago, our daughter suffered massive changes to her life and consequently to ours, when she suffered an acquired brain injury due to strokes to both sides of the brain after a craniotomy for a brain tumour. We quickly realised, when she was sent to her second hospital, that she was not seen as being a viable, worthwhile, human being and was viewed as merely a cost. We were grief stricken as we watched our daughter unable to do anything. At that stage, she couldn’t even swallow. We were yet to realise how the health system treats people with disabilities. Nothing could have prepared us. Our daughter was a financial liability, and eventually we realised, the government wasn’t interested in whether she lived or died. I started to feel that they didn’t want her to survive. And we were actually told at one stage when they left her in a room when she first went to our local hospital, that they were waiting for her to die. Our daughter spent 11 months in hospital… three different hospitals. The last hospital she was there 18 weeks more than she needed to be, because no one wanted to look after her. She had been, what we now know as ‘dumped’ by a rural hospital in a major Melbourne hospital, because it saved costs for the regional hospital. We couldn’t get anyone to take her for rehab and she had to spend 12 months in aged care at 29 years of age, to access rehab. It was then I first started to see the way Australia treats people with disabilities. Our daughter had been teaching children with disabilities for several years. She knew there were some problems
with services and accessing equipment and needs, but I don’t think any of us really understood how big the problem was. Fortunately, we were living in an NDIS trial site and our daughter came home to live with us for three years, after some funded home mods, as her home was no longer accessible now that she was using a wheelchair. Eventually, the government brought in SDA and our daughter managed to get an SDA accessible property and is living there now. When she started having NDIS assistance in our home, she needed two carers to help her shower and do many things. Overnight, she needed active assistance because she was on a ventilator and at risk of aspirating at any time. Today, in her own SDA unit, she has one to one supports. Overnight she shares SIL care with a resident who lives nearby and she has managed finally, thanks to the NDIS, to go back to her work at the special school where she once taught. She doesn’t need supports during those hours. So that has cut her care needs. She is working on losing her PEG, which allows her to take in liquids, with the assistance of a dedicated Speechie, as she cannot swallow liquids and that again will decrease her care needs. The NDIS fund our daughter’s therapies and they have made such incredible improvements in her life in her building capacity and becoming more independent, which is what she wants after all. Every therapist tells us how hard she works to improve. I see the changes. If our daughter had not had her capacity building supports, she would probably be living in an institution now, unable to do very much for herself at all. I have to wonder if our daughter would be alive today without the NDIS.
I ask that politicians try to see see past their able-bodied lives and imagine what it’s like to live with a disability, especially to suddenly acquire incapacitating disabilities which totally change one’s life for the worse, while living with the constant threat of having therapies removed or the opportunity to go out into the community as the abled can do, gone.
Every time an NDIS plan review comes up, we live in fear for that time. I find I’m constantly depressed and living in a dark place because of what we deal with, with the NDIS, and even the NDIS commission. I feel resentful at members of the public who don’t have to face what we face, constantly being fearful that our lives will become even worse than they are now, as we worry about our daughter’s care needs being removed. We are in our 70s trying to care for her, which is basically an impossibility. We are already on call 24/7, as providers constantly let us down. I also worry about my friend whose son has been told he will lose his NDIS funding. He lives independently. He has a job and he’s happy. But because the NDIS now sees him as not worthy of supports, he will have to go back home to live with his parents and will no longer be able to work, even though the NDIS planner told his mother that he can find work in ‘mainstream’ society. That is not going to happen. There are so many other stories of people living in fear. The fear of the unknown is causing undeserved stress in the disability community. To those reading this and considering changes, please think about the impacts on people who are not criminals, who deserve to have reasonable quality of life and not be shoved into homes with people they don’t know. We do that to prisoners. We shouldn’t be doing it to people with disabilities. They are not criminals, even though at times they’re made to feel they are! Please think about how you can continue to help people who have already been helped to live better lives. Our daughter has also worked hard advocating for young people in aged care and we’ve seen massive improvements in the numbers dropping as people with disabilities are moved into respectful accommodation with people their own ages, and also the choice to live alone. I cannot even imagine what would have happened if there hadn’t been an NDIS. At our age we do find it hard to be on call 24/7, as we are, because providers constantly let us down.
I think about what will happen to our daughter when we die. It is a constant thought for me and many other parents. I envy my peer group who don’t have to think about that and I wish we all had the security of knowing the NDIS would have permanency.
While I realise there are some people with disabilities who don’t necessarily need the NDIS to support them, without the supports that once existed in our communities (now gone since the NDIS began ) where will they get their supports? I believe that if the NDIS is to be improved in the eyes of politicians, then there must be access to the supports in the community for those people who are no longer participants.
We can’t just write off a whole section of our society! They can’t suddenly lose supports that have enhanced their lives. They shouldn’t go backwards due to NDIS changes. Please think about how you can help people who have already been helped to live better lives.
It is, after all, only luck that you are reading this submission that I have written and I am not reading YOUR submission! We could be in each other’s positions here. Think about the good old golden rule, where you treat people as you would want to be treated.
We’ve always been so proud that we live in a country that fought to introduce a world class NDIS, to give people with disabilities the dignity they deserved and the assistance to live a reasonable quality of life, which many have never been able to do. To think that they’re now looking at losing so much, is just the worst fear a parent of a person with a disability, or a person with a disability can imagine. The stress and the angst that I and so many others are feeling, makes me so angry that we can’t all just get on with our lives, instead of thinking about the NDIS 24/7!
Meanwhile providers continue to overcharge, charge for shifts not done, notes not written and upping the price of anything deemed ‘disability’ to exploit the scheme!
Our daughter does her best to conserve her funding and get value for her funds, because we have this idea that if we save some money, someone else can use it for something they need. I don’t even know if that’s how it works, but we like to think that if she can cut costs a little when she’s buying services or equipment, it helps someone else. Just last week she needed a tube for her wheelchair tyre, and the provider was going to charge us $70 to put the tube in. We thought that was just unbelievable. So we went to a bike shop, and they charged just $30. Well, that’s more than a 50% saving. And my question is, why are providers allowed to charge so much more purely because of a disability label? It’s total exploitation, and it reduces people with disabilities to becoming commodities to be exploited. Participants are not responsible for the rorting of providers. They’ve been screaming into the wind since the start of the NDIS, but no one wanted to listen to them because it seemed it was more important for businesses to make money, than participants to be treated as human beings and not exploitable commodities. Remember: People with disabilities come to the NDIS because they need help. Providers come to the NDIS because they see an opportunity to build a business and consequently wealth at a very fast rate. Thank you for allowing me a voice.