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Submission SUB-B8N1-003640 (Anonymous)

Submission reference
SUB-B8N1-003640
Submission type
10 areas for improvement
How can we empower you through the planning process?

When the NDIS first rolled out it was an asset-based scheme. Sadly today it is no longer the visionary asset-base scheme. If one takes a look at the International Convention on the Rights of People it is heartbreaking to see how far the scheme has moved away from the intentions of the convention. Now it is deficit-based. From a planning perspective, an asset-based scheme looks at the vision, and goals and asks how it can help to support the vision. But the deficit-based scheme that we now have is focused on "What's wrong, what can't you do, the planners are almost entirely operating from a medical focus. No one gets a 'Good Life' when the focus is deficit. My daughter's first plan was done by the NDIS and the planner clearly understood its asset base. With all her questions focused on how to help my daughter kick some big goals.

What is the best way to provide supports for those not in the NDIS?

NDIS needs to focus on people with disabilities. Not medical problems, not mental health just disability. Medical issues belong within the Health Department, and mental health issues need to be addressed perhaps with a similar scheme just for mental health. Here is an analogy of the current situation. The ship has gone done and people are climbing into the lifeboats. But there are too many people in the lifeboats and they are now also sinking.

What is the best way to support children with disability… and those with emerging developmental concerns?

When the NDIS rolled out it was very clear that the NDIS for children was not meant to replace the role of parents. I don't feel it's helpful to start providing support workers for children. A better solution might be to have a greater focus on the inclusion of students with disabilities in spots, and schools. Having a support worker just makes the child with a disability stand out more instead of being included.

How can the market be better designed, structured and supported?

Again, if we look at the very beginnings of the NDIS it was not market-based it had a social base. But bean counters and bureaucrats just couldn't leave things alone. Go back to the social base. A market-based scheme works fine in large cities where you have a big market. But in rural and remote areas this leaves people with nothing. From the very beginning, there was an opportunity for the NDIS to be embedded in the community, to work with education, universities, chamber of commerce, sporting groups, and community-based groups like Rotary and Lions, to ensure that the community understood the value of people with disabilities and how the NDIS was in fact going to benefit all Australians. In my community, the NDIS contributes 140 million to the local economy each year. But yet the business community and chamber of commerce are completely unaware. Economic participation was promised to participants, but that is never going to happen without the understanding and willingness of the community to engage people with disabilities.

How should outcomes and performance be measured and shared?

Well, one of the big problems is no accountability. Any fool can become a provider and help themselves to the NDIS purse. Providers must be held to account right from the moment they apply, there should be an interview process with a panel including participants and families asking tough questions. Providers need to be able to demonstrate how they have helped participants that they take money from to build their capacity. All providers must be put through training on how to counter the wounds and devaluations that people with disabilities experience. There need to be regular but random visits to all providers to check on who, how, and what they are doing. At each of my daughter's planning meetings, I provide and report on her capacity and how and in what areas she has grown. And therapists need to be held to the same high standard.

How would you build better outcomes or goals into your plan?

One of the biggest challenges that I see for many families is a lack of understanding of how to help their son or daughter get the good things in life and how the NDIS can help.
Perhaps after being accepted into the NDIS ALL participants and their families go through a training process before any money is handed over to ensure that are know how and what the NDIS plan is for. Again if there was more connection with the wider community through the education system, and universities then families would start to understand how to think about the future, what will we need how will we get there, and how can NDIS help.

What does good service from someone helping you navigate the NDIS look like?

All of my daughter's support staff are trained in SRV- Social Role Valorisation. And Asset-based community development. The reason, these trainings help staff to understand the importance of a role for a person who society has devalued. The training helps staff to safeguard the valuable roles that my daughter has. The best kind of support is not seen. E.G. My daughter has a small business, she goes into lots of local businesses to do her work. Support staff assists in getting set up and then I have them leave, my daughter phones them when she finishes. Not having paid support staff there all the time allows people within each business to have their own relationship with my daughter. If paid support staff were there the whole time this would never have happened as people will always defer to the support staff.

How should the safeguarding system be improved for a better NDIS?

One of the best ways to keep people safe is for them to be included and live their life in the light not in the shadows. The history of disability in this country has some very sad chapters, ensuring that we don't repeat the mistakes of the past is very important. Information is power, when support staff have a good grounding in SRV they understand how to support the person to 'do for themselves' not do for them. Here is an example of how good training can lead to great outcomes in particular building enormous amounts of capacity. " When my daughter first started working in her little business we didn't have any paid support. So for the first year, I was her support person. During that time I very much wanted her to take responsibility for putting fuel in her car. But try though I might I couldn't get her to do this. One of the great advantages of paid support staff is that it offers the person the opportunity to learn to accept and adjust to how other people manage and do things differently. So after a couple of years with an amazing young support worker, my daughter was not only filling her own car but she was going in to pay on her own. One day the support worker told me that a young man had been watching Emma fill her car and he approached her when my daughter went in to pay. He was quite taken aback by seeing my daughter in her own car and that she had a business. At that moment my daughter was a great teacher, she helped that young man look differently at people with disabilities. But a few months ago that same worker was again waiting while my daughter filled the car. Then a young woman approached and very angrily said You lazy so and so you are supposed to be helping that young woman. My daughter's support worker told her I am doing my job, my job is to get out of the way and not be needed, to help this young woman be as capable and independent as possible." One of the big challenges for support staff is that they don't understand the real purpose of their role namely to help the person they support to make their own way in the world. Many providers are completely unaware of the ways in which they exploit the people they work with. E.G. Staff wearing uniforms with a company logo on it. Company cars with logos on them particularly when the provider is offering a day service for adults and have 'child-like' images on the side of the vehicle. So the question is, are providers corporates or are they in the care field? One of the other training modalities that I send staff to is behavioral and sensory awareness. If providers and staff understand that very often 'behaviors are a way for the person to communicate'. Imagine how the participant's world could change if instead of restrictive practices being put in place staff just watched noticed and learned what the behavior was saying.

Is there anything else that you would like to tell the NDIS Review?

There is a very real problem with High Care. As a result of the Quality and Safeguarding decision in 2021 participants with high care needs could only be supported by a qualified nurse who has also had to undergo specialised disability training. This is probably fine in a large marketplace but the further you get away from big cities this becomes very problematic. Here in Townsville, this has had devastating results. At the start, local providers felt that this was too expensive and they got out of the high care market. That left Townsville with just 1 provider offering high-care support. But when she passed away in early 2023 this group of participants was left with no choice or control as the only way they could get the support that they needed just to survive was to go to the hospital. There are in fact 10 NDIS participants stuck in the Townsville Hospital, they have been there now for 6 months. Recently the hospital has started to talk to them about shifting them into aged care facilities. I am also aware that this situation is also happening in several other regional centers. This must be fixed.