Submission 77
I am a 27 yr old NDIS participant who has access to scheme for autism and other psychosocial disabilities since 2021. Despite having the possibility of being autistic brought up by multiple mental health professionals over the course of my life, I was not officially diagnosed until I was 22. In addition, I have several chronic physical health conditions that impact my day-to-day life that I do not receive NDIS funding to support.
I have experienced severe mental health struggles since I was a young teenager. Due to being autistic, social interactions were challenging and I struggled greatly with making and maintaining friendships. School created so much anxiety that, despite doing well academically, I would come home at the end of the day and have meltdowns or refuse to go to school all together. My self-esteem was so poor, and I was struggling so much that I thought that I and everyone around me would be better off if I was dead. I was 15 the first time I attempted to take my own life. Since then, I have attempted so many times that I cannot count them. At 18 years old I was spending more time in psychiatric hospitals than I was at home. I was hospitalised many more times in my early 20’s prior to receiving my autism diagnosis. I would go through phases of doing a little bit better and attended university part time with a lot of support from my mum. But would very quickly crash and burn and I had to drop out half-way through the semester multiple times. At times, I experienced so much skill regression that I could not choose an outfit for myself or prepare food that required more than microwaving a meal that was bought or prepared for me by my mum. I was unable to live independently, had difficulties leaving the house, was socially isolated and felt very distressed every day.
Since receiving NDIS support my quality of life has been improved greatly. I have made a few good friends and am able to get support from my support workers and psychologist to maintain these relationships. I get my basic needs met with assistance from support workers which allows me to put more of my capacity towards education (I am taking one subject at university), work (I work about once fortnight but I am hoping to continue to build my capacity to allow me to work more), maintaining friendships, and building capacity in other areas of my life (at the moment I am mostly focussing on gaining skills in the kitchen). But I still have significant struggles. I still experience obsessive suicidal thoughts. However, the support I receive has allowed me to create a life that is worth living, so when they do pop up, they are easier to manage. I still struggle with executive dysfunction. So even though I have a lot more tools to help overcome barriers to doing things, tasks often take me much longer than the average person. I still feel overwhelmed by the number of things that I need to do to keep myself alive and healthy, but I feel comfort in knowing that within a few days I will have a support worker coming to help me. Occasionally my support needs aren’t met, despite having funding, due to difficulty finding the right person to support me, illness and injury of support workers or support workers going on holiday being unable to find suitable temporary replacements. These periods have created crisis situations which unfortunately take a long time to repair even after appropriate supports have recommenced. Losing access to reasonable and necessary supports, even for short periods of time, can have massive, long term consequences. So having access to funding and consistent supports is paramount to maintaining my health and well-being.
Submission 77
Given the significant impact that the NDIS has had on my life, I am very concerned about the NDIS Amendment Bill and planned reforms. In particular, I am concerned about the ability to cut funding for a specified group of supports (including social and community participation), reduction in the number of participants and how people will be cut, requirements for providers to be registered and a demonstrated lack of understanding of how additional disabilities intersect with each other. These changes can be dangerous for participants, limit access to reasonable and necessary supports, remove choice and control, and create unnecessary fear and anxiety.
Cuts to funding for specified groups of supports
Allowing the minister to make cuts to a specified group of supports will have dangerous consequences for disabled people. This amendment allows cuts to be made even if the participant is receiving less funding than the cost of supports that are considered reasonable and necessary. Meaning those who are already unable to receive the support they require, may also see a reduction in funding putting them at a higher risk for harm. Currently, the government is proposing cutting social and community participation funding by 35-50%. This is incredibly dangerous. I mostly use my social and community participation for going to buy groceries, medication and other items that I may require to take care of myself, and going to medical appointments. Without this funding, I may have difficulty eating adequately, go days without access to my medication or be unable to provide my doctor with the necessary information for my care due to communication difficulties. But it is also important for other necessities like accessing other government services (e.g. Centrelink or the Department of Transport and Main Roads), clothes shopping, going to the bank, taking items to the dump/resource recovery centre or taking my dog for grooming. This funding allows disabled people the opportunity to live ordinary lives, just as anyone else can.
Beyond essential services, social and community participation funding has also allowed me to connect with my peers or engage in activities I enjoy when I am socially isolated or during crisis episodes. Social connection and engaging in meaningful activities are essential for the mental health and wellbeing of all people. Without access to these things, I experience more frequent and prolonged mental health crises, struggle with self esteem and has significant impact on my wellbeing. Disabled people, just like anyone else, deserve social connection and to be able to participate within their community.
Cuts to social and community funding could mean myself, and other disabled, may lack access to essential community services and activities, but this amendment would also extend the power to the minister to cut any specified group of support in the future. Potentially leading to reduced support across multiple categories, putting disabled people at risk of even more harm.
Cuts to number of participants – and assessments
I have concerns about who will be cut and how people will be cut. There are talks of creating and/or using an “objective assessment tool.” However, for a lot of disabilities, especially psychosocial disabilities, this could not possibly exist. This tool will apparently assess a
Submission 77
person’s ability to do things without any assistance from people, assistive technology or a mobility aid. But in my experience as a person with psychosocial disabilities, assistance with some tasks means that I am able to do other tasks independently because I have more capacity to put towards other things. For example, I get some assistance with cleaning my house, preparing some of my meals and doing some of my errands. Because of this support I am able to do other things independently – cooking and baking for some of my meals, some errands, some tidying and/or going to a social event. I fear that people may see what I’m able to do independently because of the support I receive and assume that I may not need the support I get. I have the skills to do the things, what I am lacking is the mental capacity to do all of the things all of the time. How can a single tool or a stranger I talk to for a few hours possibly assess what I am able to do without any support at all? The last time I had a collapse in supports, I became so overwhelmed that was unable to feed myself properly for multiple weeks and ended up in hospital with a feeding tube because I was at risk of refeeding syndrome. So is that my capacity without any support? But how would we know that without me having to experience it?
In addition, there have been suggestions that the assessment tool will be I-CAN. I have concerns that being assessed by someone who does not know me will be incredibly distressing. I often find it overwhelming to meet new people, but especially when I will be expected to be able to discuss how my disability impacts me. My disability impacts the way I process and communicate information. I find in medical appointments doctors ask me lots of questions I’m not expecting and I answer with something that feels true at the time, but over the next couple of days I realise that it wasn’t accurate at all and often I have downplayed how often something happens or how much it impacts me. But at least with my doctors I can go back and see them if I really need to. It has also been my experience that autistic people especially will think that their circumstances are quite normal. For example, saying they experience, ‘just the normal amount of pain,’ when they actually experience moderate to severe pain on a daily basis. I worry that I will not be able to give them accurate information about my support needs. Having someone who has supported me for an extended period of time would have a much better understanding of my capacity than someone who has spoken to me for a couple of hours.
Requirement for providers to be registered
Requiring providers to be registered removes choice and control from participation and does not improve participant safety or reduce fraud. My worst experience with an NDIS provider was with an agency that was registered. They overcharged over $1000 and used my entire funding for support coordination/recovery coaching, while providing very little support. I asked them to provide me with an itemised list of support and despite pointing out to them that around $1000 was unaccounted for, they denied everything. They had also charged for admin work (e.g. scheduling appointments, note taking) that were not allowed to be charged for according the Pricing Arrangements and Price Limits. In addition to overcharging, this company leaked private contact information of all of the clients in an email. I reported them to the NDIA but never heard anything back. The company has only gotten bigger.
Submission 77
At the time this category of supports was NDIA-managed, so despite having a better option (a non-registered provider), I was unable to choose differently. This is proof that requiring registration will not fix the problems you are trying to solve. It will only make it harder for participants to choose supports that suit their needs.
Intersectionality of multiple disabilities
Funding for supports for only the specific diagnosis that a participant meets access for fundamentally misunderstand the experience of people with multiple disabilities. Having multiple disabilities isn’t like having disability 1 plus disability 2. They all interact with each other and sometimes symptoms overlap. For example, if we examine a task like cleaning for me. Autism makes it difficult to clean due to difficulties with executive dysfunction and sensory processing issues (having difficulty with getting wet, smells being too strong etc.). My physical health conditions make cleaning difficult because cleaning can make my heart rate exceed normal levels, I become fatigued more easily and I experience joint pain. But then because of all these experiences, it exacerbates my sensory processing difficulties even further due to the physical sensations in my body, which can cause overwhelm, distress and/or meltdowns. In addition experiencing fatigue reduces my ability to regulate my emotions (which is already challenging due to being autistic). You can’t separate one disability from the other because of the way that each one exacerbates the other(s). And in trying to do so, you completely dehumanise participants.