Submission 664
Senate enquiry.
Right now, with the help of NDIS, I am able to live independently. I can live in a safe home away from abuse that I previously experienced. I have help to keep my home clean & my space liveable. I have help making nutritious and delicious food in my home. I have support to access the community to get groceries, medicine, other necessities, get some exercise, and someone to attend appointments with me so I receive the care I need. I have a counsellor who helps me learn the skills I need to manage my condition as best I can. These things allow me the space to attend to my basic needs like hygiene, eating, etc. They have allowed me to live a pretty normal and dignified life. I don’t think any of these things are excessive things to need. But the government seems to think it is. Previously, I have required frequent hospitalisation and other inpatient treatment. The public system of supports was incredibly traumatic. People who didn’t understand my needs, who weren’t specialised in the care I needed, who held a lot of prejudice toward me as a young woman with mental health issues. The support worker services don’t even exist any more, but the one hour a week would not allow me to live independently, to keep a clean and safe home, complete hygiene tasks or feed myself nutritious meals. I wouldn’t be able to exercise or have help advocating for in situations I cannot do that for myself. I don’t have any friends or family to help with any of these tasks. For me, the chance of severe and life threatening deterioration is very real. Even the fear and stress of these discussions is taking a dramatic toll on me. This is not just me. This is the reality for almost every participant on the NDIS right now.
I’m very concerned about the way eligibility would be assessed under these changes. Disability is such a vast & varied experience. The government, non-speciality trained people, nor some algorithm and questionnaire can truely grasp how debilitating complex disability is. Especially when it is not physical. Not to mention the difficulty of a participant being require to explain their experience to a stranger with not medical or disability training. My psychosocial disability is
Submission 664
complicated and has no cure. There is management and support to live a meaningful life, but I will never recover. It is complex and dynamic. There is no easy or straightforward way to explain why everything I do in a day, is difficult and often times unachievable. I seem capable, I seem intelligent, but in simplest terms my brains wiring, processes and chemical reactions does not work correctly. Which means that everything I do in a day is severely impacted. Even my ability to communicate can be dramatically impaired at different points in the day or week. I can write this for one hour on this one day but that is not normal. I didn’t think I would have any capacity during their enquiry period that my disability would allow me to write this. Thankfully I do today. At my worst and without supports I am regularly in hospital or other impatient services. There are no other support services available for help at home, for help with meals and community participation. There are very little allied health services funded to keep our symptoms under control. The healthcare system is at a breaking point. Now, without care, it could see an influx of 10,000+ people who were otherwise stable. You cannot rip apart the NDIS with no other systems in place without seeing people be severely deteriorating, higher costs elsewhere & people dying.
Furthermore, I’m very concerned for people who require urgent changes to their plans because of crisis situations and breakdown of equipment they need for their everyday life. These things cannot be planned for. Even if they’re being planned for, the current proposed legislation can cut these supports with no warning. There’s no room for these contingencies. You don’t plan for when your car is going to breakdown, the same goes for mobility equipment and aides. Unused fund does not mean not-required. They should signify that people are being responsible. They are only taking what they need at that time. They shouldn’t be ripped away. That is likely only going to cause people to act with more urgency & less with need. Some of these proposed changes in time limits and removal of supports make me wonder if the government actually understands how much the medical, allied health and other disability services are actually dealing with. Things work slowly. It takes time to get documentation. A long
Submission 664
time. Providers are doing their jobs at the same time as providing documentation to all kinds of people. This takes time, often months. Similarly, not being able to communicate with participants in an appropriate time frame? What if they’re in hospital? they don’t have an advocate who can speak for them? What if the technology breaks down & they don’t receive the communication. Sure, a time frame might be acceptable. But it needs to be a reasonable amount of time. It can’t be left up to the discretion of whoever is trying to make contact.
Please reconsider these sweeping changes. Look in to how companies are unscrupulously over charging and under delivering. Talk to people in supported accommodation and those around them about how the money is being spent. Talk to individuals about dodgy providers. Break up monopoly companies where the support coordinator; the person who should be a safe guard, is also the service provider and accomodation provider. I have witnessed how others are taken advantage of in these ways. How the system has been rorted by providers. Often the largest companies are the ones doing the most dodgy things. The government could choose to build and run high quality disability accommodation to keep costs down and give people what they need. There are ways to meet people’s needs without penalising the people who have done nothing wrong. Who desperately need help. Who have nothing else to fall back on. You need to build a system that works for all people’s needs if you claim so many don’t belong on NDIS. I know people who would leave the scheme if their supports were equal to what they had prior to the NDIS. There needs were met better under that system. Many of us need more than that and therefore both should be available.