NDIS Legislation Submission

By Zoe Mithen

I am an NDIS Participant, I joined the NDIS as a participant in 2017. I live in a regional area, Castlemaine in Victoria. My NDIS disabilities are Autism Level 2, and Psychosocial Disability for Schizoaffective Disorder (Bipolar Type) and Delusional Disorder.

I have several concerns about the NDIS Amendment (Getting The NDIS Back On Track) Bill 2024. These are both systemic and personal. I also have concernts about the NDIS Review, which is related to the legislation.

Singling Out Invisible Disabilities

As somebody with invisible disabilities, I feel like invisible disabilties are being targeted by both the Review and the Bill. People with invisibly disabilities are singled out and are seen as second class disabled people who need less support, or who don’t need the NDIS at all. We have seen children with Autism singled out and we are being told that many children with Autism will be moved off the NDIS and into the not yet developed Foundational Supports based in schools. We have also seen people with Psychosocial Disabiltiy singled out and we are being told that many people with Psychosocial Disability who apply to be in the NDIS in the future will not access the mainstream NDIS, but will be put into the Early Intervention stream and expected to exit the NDIS ASAP.

I would like to say that it feels really horrible having disabilities that are being singled out by the Government and the media. I strongly feel that the NDIS rules should apply the same to all types of disabilities, and that changes should be based on general principles rather than targeting specific disabilties. General principles could be the degree of severity, the probability of permanence, age, and whether the person’s disability is fluctuating and episodic.

So there could be a reason to move all children off the NDIS and into school based support, potentially with exceptions for severity. And all applicants to the NDIS could be put into the Early Intervention stream if their conditions are not proven to be permanent. Doing this would avoid singling out and stigmatising already stigmatised disabilities like Psychosocial Disability.

I have found it distressing and worrying to be in disability types which are singled out like this so frequently by politiicans and the media. It has made me feel at times fearful of losing NDIS support, as the changes are so non-specific we don’t know what the future holds in terms of eligubility and budgets.

I would like to say in particular with having two psychotic mental illnesses, I feel like the singling out relating to the NDIS, only compounds the stigmatisation related to psychosis by the media, especially at a time when we have had a multiple killing in NSW related to psychosis. On the one hand we are told that we are dangerous people, and on the other hand we are told that we don’t deserve the NDIS. Maybe if the NSW killer had NDIS he would not have stabbed those people. It is so important that we are not stigmatised and that society is inclusive of us, and that we can access medical and disability supports when we need to. Please do not create more barriers to help for people with psychotic mental illnesses, and please do not stigmatise us more in the media by saying we don’t really need support, or we can easily get better after some Early Intervention. I have had psychosis since 2006, I have had multiple psychotic episodes over the years, 6 episodes in just the last 30 months, where 4 required hospitalisation, and with the other 2 I managed it by stating with family and taking extra medication. I take 3 medications every day, and another medication if I am having symptoms. I do this even though the medications have side effects such as weight gain, gastointestinal problems, and causing me to sleep more. People with psychosis are likely to die a lot younger than the general population. The course of psychosis is different for different people: around 20% get better after 1 psychotic episode, another 20% have treatment resistant psychosis where medication is unable to help, and the remaining 60% of people with psychosis are somewhere in between, having more than one episode, but able to be

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helped to some degree by medications. Psychotic conditions are known to be associated with a cognitive decline over time, so as we age out cognitive skills will reduce, usually in relation to how many psychotic episodes we have. There are also other functional issues, which are known as “negative symptoms”. Positive symbols are delusions and hallucinations, and negative symptoms are loss of motivation, flat mood etc. I personally have problems with executive function, tiredness, not being able to concentrate as well as I used to be able to. Because of social stigma towards people with psychosis, we often have problems making friends and participating in our communities. This can be very distressing. We also have problems with stuyding and working due to stress and disability. Stress can cause psychotic episodes. It is known that our prognosis will be better if we are socially active, and that isolation can cause psychosis. I use my NDIS for a range of social and community activities, such as bush walking, camping, yoga, swimming, music lessons, and group classes in learning to not waste food, making sourdough, cooking with edible weeds. This helps keep me socially active when I do not have a large number of friends in my local area. I think that this will help me be able to go back to study and work in the future, compared to what would have happened to my social skills if I had not had access to funding for these activities. The mental health system does not help with disability related issues or social participation costs, it really only helps with diagnosis of conditions, medication, symptom monitoring and management, and hospitalisation.

Talking about costs, my NDIS funding has gone up and down between now and 2017. It took me a long time to get all the documentation that I needed. People talk about psychosis being episodic, but I have ongiong impairments as well as episodic psychosis, depression, and mania. If psychosis was ongoing for me, I would probably need long term hospitalisation or Supported Indepdent Living. My funding has always been much lower than the costs for Supported Independent Living. So I am just explaining that, so you can understand that an episodic condition can have ongoing impairments, and also that if you only want people with non-episodic conditions, you would not have people with psychosis except for those who are in need of Supported Independent Living.

Foundational Supports

I believe that reforms to the NDIS that withdraw participants’ support, should be paused until the Foundational Supports recommended by the NDIS Review are rolled out around the country.

Children with Autism, ADHD, and developmental delay, should not be moved out of the NDIS until sufficient Foundational Supports are in place all around Australia.

People with Psychosocial Disability should not be moved out of the NDIS until Foundational Psychosocial Supports are rolled out all around Australia.

Nobody who needs any support should be exit-ed from the NDIS or be denied access to the NDIS until Foundational Supports are rolled out nationwide, and people can access them. At the moment there is nothing for people who are not in the NDIS.

Furthermore I think that the Foundational Supports need to be codesigned by people with disabilities, so that even if the Foundational Supports are blockfunded like the supports in the old pre-NDIS system, they will still be tailored to the needs of the people who use them.

It would also be good to see the Federal and State governments define what the Foundational Supports will be, and distinguish the access criteria between the NDIS and the Foundational Supports in a clear way. What is the difference for example between an NDIS participant who has a $5000 plan, and someone who is using Foundational Supports that have a similar annual cost?

I would hope that Foundational Supports include some “social prescribing” where funding might pay for classes in the wider community, such as yoga and cooking, as well as support work.

I would also like to see people who use Foundational Supports for Psychosocial Disability being entitled for 20 Medicare Better Access sessions per year, rather than the current 10, as they have a greater need than those in the general community.

Needs Assessments / Budget

I am concerned about the Needs Assessment and Budget, as the assessment tools have yet to be decided, and the quality of the tools is unknown. From what I have read, there is not a good comprehensive assessment tool for Psychosocial Disability in use anywhere in the world. Will the NDIS create their own tools to assess Psychosocial Disability? Will we get the chance to have any say in what tools are used to assess us, via condesign or consultations with NDIS Psychosocial Participants.

I am concerned we do not get to chooise our own professional for the assessment. It is very worrying to be assessed by a stranger, with no rights for appeal. And we have been told that there will be no right to appeal these Needs Assessments. What if we are assigned a professional who doesn’t “get” us and our needs?

I had a Local Area Coordinator who told me in one meeting I was not as disabled as someone using a wheelchair, I was not as disabled as somsone who had cerebral palsy, I was not as disabled as someone with an intellectual disability, and I was not as disabled as someone who needs showering every day. This type of thinking is common in the disability industry unfortunately. There are milder and more severe versions of many disabilties, including Psychosocial Disability, Cerebral Palsy, and Intellectual Disability.

I believe there needs to be some way of appealing the Needs Assesments, if something is wrong with the assessment quality, or the assessor shows bias or a lack of skills or understanding.

Another issue with the Needs Assessments is as yet we don’t know how results will be compared between different assessment tools to make sure funding is fair to all disability types. For example if a person with MS scores 100 from MS assessment tools and a person with Psychosocial Disability scores 100 from Psychosocial Disability assessment tools, how will these scores be compared for fairness, since the disabilities and the tools are different? Obviously the assessments will translate into a Budget somehow, so we need to know that the Budgets will be fair across all disability types.

We have been told that the assessments will translate into a “Reasonable and Necessary Budget” rather than a Budget being created using line by line support types, but we have no idea how this Budget creation will work. What if two people get the same assessment result, but only one of them needs 28 days of STA, and weekly meal deliveries, and more therapy hours? Will the Needs Assessment include a discussion of what specfi c items we need? Will the Budget creation process be able to take the specific different needs of participants who are similar into calculation?

“NDIS Supports”

I am concerned about what I have heard about a new term, “NDIS supports” because it may be that what we can access as a support is more limited than now. It would be really disappointing to lose supports that we currently have access to.

Furthermore, the combination of “NDIS supports” and the proposal to have universal registration of providers, could together cause many providers to drop out of the market, and limit our choices. Universal registration would reduce numbers of workers, increase travel time for workers in regional areas, constrain choice and control, and help big providers not small providers and sole traders

I have heard that whitegoods would not be allowed in the future, but I bought a benchtop dishwasher which helps me keep more on top of the dishes, and that was necessary for my disability. I use my NDIS for yoga, which helps with my mental state, and with my physical health. Will yoga be an official “NDIS support” in the future? At the moment we have a lot of choice about

Rules

I am very concerned that the legislation says that a lot of information will be put in the Rules instead of in the legislation.

With a lot of information being put in the Rules, this means there will be a lack of parliamentary oversight for many future changes to the NDIS. This will mean participants will have less ability to protest changes in the future, and influence politics so that the changes don’t happen or are revised.