National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 146

Hello,

I am deeply concerned about the NDIS bill and the disdain that the government is showing for people with disability. The proposed changes will make people’s lives significantly harder and will prevent some from accessing much needed supports. I would love to have written you a more comprehensive, edited, and referenced submission but I’m tired- from having a disability, from trying to navigate the NDIS and Centrelink, and from trying to keep up with the news and the narratives around the bill.

Not only would these changes make people’s lives worse but they’re not even good economic decisions. Providing people with needed supports keeps them in the work force- it keeps industries benefiting from our skills & keeps more people contributing to the economy. Not only that but the industry around supporting people with disability is part of the economy too so reducing access is economically short sighted as well as inhumane.

I understand that there is a lot of concern over the scheme blowing out in part because of the rise in Autistic people getting diagnosed and accessing supports. I think there is a misconception that many of these late identified people are simply complaining more than they used to but this is not the case. Factors such as the cost of living, changing employment landscape and the general state of the world are making life more stressful for everybody, but one of the key features of autism is difficulty with change and uncertainty- these challenges impact us disproportionately. Now more than ever it is essential that low support needs Autistic people are able to access supports that will keep them from catastrophic burnout. Autistic burnout is something that research is only starting to address but results in dramatic loss of skills and capacity, increases in sensory challenges, can last for months to years and some never recover- I’ve been in a deep burnout for over 18 months and don’t know if I’ll ever be able to work or live a normal life again AND this would have been entirely preventable if I had had more support in place earlier.

needs assessment tool -even in the best case “codesign” scenario this couldn’t possibly account for the needs of all people with disability and our intersectional experiences -it won’t keep up with evolving understanding of disability (if this tool was created only for autism I doubt it’d hold up to research in 5-10 years so why would we look this tool in for everyone?) -it’ll be incredibly easy to skew (deliberately or not) based on the people involved and the research considered (a particularly large concern for the autism community given the landscape of autism research and understanding) -highly unlikely to meet communication & executive functioning needs of many of our community or account for our need for time to adjust to new situations -many Autistic people and people with disabilities have trauma from working with systems (Centrelink & NDIS providers etc.) which will have significant impacts on their feelings of safety & ability to get all the necessary information across -this is will be expensive to create and won’t fit the purpose- why bother creating the tool at all? It would be simpler and cheaper to refer to the expert opinions of our health providers

“Suitably qualified” staff to administer the needs assessment -Irrespective of how much training they receive, it’s ludicrous to think that any professional could be equipped to meet the communication and accessibility needs of everyone in the disability community -If Centrelink is anything to go by then a “suitably qualified” probably doesn’t even mean medically trained- I recently had an “independent medical assessment” with Centrelink that involved a bureaucrat asking about my work and employment history and absolutely no questions about my health

“NDIS supports” The specific items of support that participants can access would be determined by a set list approved by ministers- what qualifications do ministers have to weigh into what people need? -this will particularly impact on our community (and is probably meant to) as understanding of our needs is still evolving

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 146

Powers to cap funding based on content of initial plans is outrageous- in many cases the initial plans are inadequate and haven’t considered all necessary information. In my case, the assessment report included in my application that stated I need support with meal preparation in order to access food, however meal prep has not been included in my plan- I was told that I’d need additional evidence from an OT in order to have it included. It is simply not reasonable or realistic to expect that participants would have knowledge or access to documentation from multiple professionals before applying for the NDIS and that not having such evidence should preclude us from accessing the supports that we need.

Participants who get “too close” to spending all of their funding within a certain period can have their plans taken over and agency managed- what about choice and control?! This is an outrageous denial of our autonomy

There are many legitimate reasons for intra-plan inflation, especially with the shambles that the sector is in at the moment. I am on my my first plan and am onto my fifth support coordinator in less than six months. I have had to pay for all of their handovers, while they haven’t done the work that I need from them. I’m still waiting to access a psychologist, and to get support finding a support worker because I’m too disabled to do it on my own. It’s infuriating to think that not only is my time (and life) being wasted but that I might lose out on the funding to get the help that I need simply because of broken systems.

Removing the words “reasonable and necessary” to instead prioritise “scheme sustainability” even at the level of the needs assessment shows a blatant disregard for our needs, and autonomy

There is a lot more to this but this is all that I have the capacity and confidence to address. I sincerely hope that you listen to the disability community on these matters. Our lives are at risk. Without supports from the NDIS many more people will fall through the cracks in our health and welfare systems. This means homelessness, incarceration, substance abuse and it means more people being stuck in situations of domestic violence at a time when all of these issues will be increasing. Disabled people are people. We deserve dignity, we deserve autonomy, and we need your support.

Sincerely, Emma Wylie