Submission 1787

I am frightened now that I will lose NDIS. I am autistic and I have bipolar.

When I am unwell, I don’t get out of bed. Sometimes I have gone as long as a week without showering. I find brushing my teeth very difficult due to sensory issues, but I try to do it once a day even though it’s uncomfortable.

I don’t go to the supermarket alone, because I find it too overwhelming. There are too many sounds and too many people, and I struggle to make decisions about what to buy without help. I can get confused, forget where things are, and feel lost. Even when I go with my husband or a support worker, I sometimes have to leave part way through because it becomes too much. The lighting and sudden noises, like alarms, can make things worse. I can usually tell when I am getting close to a meltdown because everything starts to feel louder and more intense.

I travel to Sydney regularly and sometimes to Perth to see family. When I fly, I need support to get to the airport because I become very anxious. We arrive early because I worry about missing my flight. I find security checks difficult, especially being touched, and I am constantly worried something will go wrong. I use noise-cancelling headphones but don’t feel comfortable using them unless someone is with me in case I miss announcements. I don’t sleep well before flying because of anxiety. On one occasion I became so overwhelmed at the airport that I sat on the floor and cried for a long time. Once I am on the plane, I stay in my seat the entire time as I don’t feel safe leaving my belongings. My husband is my support if he is flying with me, when I go to the airport without him I need a Support Worker (my hubby can’t always take time off work).

I find it hard to keep on top of things at home. Tasks feel overwhelming and I often start things but don’t finish them. Our house can become cluttered, which adds to my stress. I struggle to find things and rely on others to help me.

I live on the Mornington Peninsula and like living here, but I don’t go out or socialise on my own. I don’t have friends locally and mainly keep in contact with friends in NSW over the phone. I would like to join groups like a craft group or get involved in the community, but I can’t do this alone and don’t currently have enough support hours to do more than basic tasks and appointments.

I rely on my support workers to help me with day-to-day life, including getting to appointments, managing my routine, accessing the community, and staying on top of my health. They also support me when I am feeling overwhelmed and help me follow through with tasks. Without this support, I would struggle to manage my daily life and would likely become unwell.

Submission 1787

I contact my Social Worker if I am feeling down or distressed. She helps me regulate my emotions and work through things when I feel overwhelmed.

I also rely on my Support Coordinator to organise and manage my supports, including my support workers, therapists and appointments. I find it very difficult to keep track of everything, make decisions, and communicate with services, and I become overwhelmed easily. I also struggle to follow through with tasks and appointments without support. My Support Coordinator helps make sure everything is in place and that my supports are working together. Without this support, I would struggle to stay engaged with services and attend appointments.

I recently got married. My husband works full-time and supports me when he can, but I worry about being a burden on him. We do simple things together like going to the club or visiting friends occasionally, but most of the time I stay at home.

I attempted to study a Masters in Social Work but had to stop because it became too overwhelming. I found it difficult to manage the workload and travel requirements, and it negatively affected my mental health. The last time I worked was when I was 26, and I was only able to maintain employment for a short period.

When I am at home, I spend time doing art, being with my dog, or watching things online like craft videos.

I enjoy going to exercise physiology and have noticed real improvements in both my mental health and physical health. Over the past 14 months I have reduced my weight significantly, which I had previously gained due to the side effects of my medication. This support helps me stay motivated, manage my routine, and improve my overall wellbeing. Without it, I would struggle to maintain my progress and my mental health would likely decline. I would like to continue with this support.

I miss my parents, who were my main support for most of my life. I lived with them until I was 41. My mum now has dementia and my dad cares for her full-time, so they are no longer able to support me in the same way. I visit them when I can, but I don’t have the same level of family support anymore.

Because of this, I rely heavily on my formal supports to manage my life and stay well. Without these supports in place, I would struggle to cope.

My life has never been better than it is now, and this is because I have the right supports in place. These supports help me stay on top of my daily life, manage my mental health, stay engaged in the community. I am worried that if my supports were reduced, I would struggle and things would go backwards.

I believe there are better ways to save money for NDIS than cutting people from the scheme. I’ve listed these here:

• Stop hiring expensive elite law firms to fight people from accessing NDIS. Often the law firms are charging more then people even want in their plan to begin with. Much of the time they lose anyway, but not before causing participants a great deal of pain and costing the government a great deal of money.

• Train your staff better. A local area coordinator only has six weeks training. Planner and LAC’s commonly make mistakes on plans. To get changes we need to go to the ART again costing the government more money. Make Planners and LAC’s specialise in types

Submission 1787

of disabilities. No one can know everything about all disabilities. Staff lack of specialised knowledge and understanding specific disabilities causes inaccurate information and plans needing expensive ART reviews.

3.Why are they using private ‘consultants’? Employing people with skills to work directly for NDIS is cheaper than ‘consultants’. I’d like transparency as to what these consultants are actually doing.

4. Ludicrous staffing caps mean paying current employees huge amounts of overtime to get through the backlog. Overtime cost much more. Also overworked employees make mistakes. This leads to more ART reviews. The hiring freeze means when people leave due to overwork cannot be replaced creating more work for already overworked staff. No wonder mistakes happen.

5.If you want support providers to be registered get rid of the costs to get registered and focus on what the service they provide to their participants. Right now it can cost $16k or more to register once independent auditors are hired. Most sole traders do not have that amount of money especially if they work part time or have three or less participants. This would mean less people having access to support workers particularly in regional and rural areas. We need upskilling of existing workers free of charge to ensure there are enough skilled workers to meet existing and growing needs. Auditing when not face to face doesn’t prove how good a provider is and is not about the wellbeing of participants. P s the biggest rort I experienced was a registered provider that really was a labour hire company operating from California USA and outsourcing to people in my local area that could not be trusted to actually turn up. I hired them because they were the top google result when I search for registered providers of cleaners in my local area, so yes you can be a registered provider and be cheating the system.

6.Stop making us get endless reports. We have already proven our disabilities and their permanence we shouldn’t have to prove it over and over again (sometimes annually). This costs money out of our plans and has to be factored into what we ask for. These reports are unnecessary and in my experience are usually unread by the staff who are too busy.

7.If you want to save $$$ and have a working system consult people actually use the system. Many of us are smart and can provide good strategies to save money and not compromise supports for people. Real co-design is needed not lip service. This inquiry is an example of inaccessibility as there isn’t much time or support to write a submission.