I am writing to express my deep concern about the proposed NDIS legislative changes currently

before parliament.

I am asking that the proposed legislation be reconsidered as many of these proposed changes will place people with a disability, like my son, at an increased risk of harm and increased use of restrictive practices. Reform is required to make the NDIS sustainable in the long term but should remain person-centred. People with a disability should not be viewed as a financial liability, or be punished or penalised by a system because they need support.

Anyone’s life circumstances may change – birth of a child or grandchild with a disability, onset of a disease such as Parkinson’s or Dementia causing disability for yourself or your partner , or some other unexpected trauma that causes lifelong and significant loss of independence in the ability to do everyday tasks. Those considering these changes should consider how their lives may be impacted and what sort of system would they like to deal with to gain supports to assist them to manage in their every day lives. Nothing special, but simple things like personal care, doing the shopping, going to appointments, maintaining social connections, being part of their community. Not becoming invisible as they cannot go out in the community, Not being a long term care burden for other family members. Not fearful of what the future holds for them when parents pass away or familiar support people exit their lives. Not being forced into institutionalised living arrangements because of lack of funding or options. Being able to choose who provides their support, where they live and control over what happens in their life and to them.

There are a number of things in these proposed changes that are of great concern to me;

• Narrowing the definition of disability and functional capacity. Considering the person’s function, without consideration given to the context of where it occurs and the environment in which it occurs. Both things inform how a person manages, what increases their success and what causes further limitations. It doesn’t take into account “real life”. There is more to people than just their disability.
• Potential bench marking of the level of support that someone with a type of disability should receive, based on algorithisms and automated decision-making. This moves away from the planning of support being person centred. The person with the disability is no longer being considered as an individual. The proposed reforms allow limited mechanisms to discuss or ask for review of these decisions if they get them wrong.
• The way in which assessments are to be undertaken. It is my understanding that the use of the ICAN assessment tool will be a standardised phone interview with someone not necessarily with allied health or disability experience. The results of this assessment will be used as the basis of the funding. Someone’s disability may have broader functional impacts than can be captured in this style of interview. What if you don’t neatly fit into the boxes of this assessment – will your needs just be ignored?
• The system is becoming more removed from the people that they are to assist, with the people currently making decisions having no direct contact with the person with the disability. There is no direct assessment of the environment in which they live. There appears to be little weight given to the “lived” extperience of the person with a disability – what works and why. Reports from Health professionals or supports who know the person with the disability often appear to be disregarded. It is of concern that weight may instead be given to

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• evidence based peer reviewed studies – if these exist for the cohort or situation that the person lives in – in isolation, and without taking into account the Health Professionals recommendations or the person’s “lived” experience..

• There are numerous provisions in the legislation which give extraordinary power to the Minister or CEO - powers that could include making decisions for blanket rules over “classes” of disabled people and what supports that should receive. Eg SIL 1:3 ratio regardless of your support needs; “Value for money” – the CEO can stipulate a funding level based on a lower cost comparable support . The legislation does not specify that the support must provide the same outcome for the person with the disability; The Minister could chose to cut social, civic and community access funding rates by more than the stated 50% if they felt this was required for budgetary reasons. These are of huge concern as there is no oversight, no consideration given to the impact it will have on individuals and the increased safety risks that this may incur. Where is the oversight from other independent agencies, the checks and balances for the future? Given the Governments lack of adoption of recommendations from the recent Royal Commission into Disability, this legislation further erodes the rights of the person with a disability and the way successive governments may view them.

• Less transparency. The review process is already hard enough. These proposed changes will make it harder to seek review if the funding approved doesn’t meet the needs. Even now the delegate who makes the decisions about funding does this with no contact or conversation with the person with the disability or anyone involved in their lives. Reports provided do not appear to be read or recommendations totally ignored. Reassessments / change of reviews / internal review requests are made because there are real concerns in regards to gaps in funding need. They are not done for fun, because the process is traumatic. The new legislation also allows for even longer time delays in consideration of reviews and requests. The avenues to request review are also less. The NDIA could save significant money alone in lawyer and tribunal costs, hours of public servants in reviews if they could spend some time at the start of the process meeting with the person with the disability BEFORE decisions are made.

I could go on about many of the proposed changes in the legislation. The concern is for how these may be used in the future, possibly not for the intention for which they are currently proposed. The system needs reform to make it sustainable, but please do not lose the central tenants of choice and control on which it was proposed. Please do not steer the NDIS into a potential ROBOdebt / Centrelink situation where the system places people with a disability, and their carers, in rear risk of harm.

I am the mother of a 29 year old man who has Intellectual disability, Autism Spectrum Disorder (level 3), epilepsy, language difficulties and significant behaviours of concern. These behaviours occur due to his anxiety, difficulty with communication, difficulty accepting changes in routine, and becoming emotionally dysregulated. When his emotions are heightened, he will self harm, shout, scream, be physically aggressive, and damage property (throw furniture, punch / kick holes in the walls).

As carers, we (his parents) balanced supporting his everyday self care needs, assisting him to access the community, and to manage his behaviour. We did this while continuing to work in

• paid employment to our greatest capacity, and to support other family members (His sister and her children, and our elderly parents). We continued to support our son through my husband’s diagnosis with terminal cancer. As carers, we became exhausted. We experienced trauma from the violence within our home. We suffered injuries, including fractures, sustained during our son’s emotional dysregulation. His disability had a profound impact on his sister, which impacted her mental health. We worked hard to keep our son living at home with us until March 2025 when he had to be removed from living at home for both his and our own safety. His father, my husband, has since passed away in April this year.

Our son has been in receipt of support funded by the NDIS since age 19 yrs, when the scheme rolled out in our QLD region. This support was incredible and gave us hope for his future. While initially funded to attend a day respite programme (support ratio 1 worker to 4 participants), due to frequent and escalating incidents towards support workers and other participants, he was later funded for 1:1 support to enable him to access the community. Support workers assisted him to undertake activities in his local community, working on his communication and supporting behaviour management strategies, and assisting him to build a outine of daily activities (some at home, some in a group setting where he still required 1:1 support to assist his communication and behaviour management) . Our longterm goal was for him to be living in the community with support independent of his parents, knowing than one day we wouldn’t be able to care for him, and he could not be supported in the same way by his sister and her young family. Supports gradually increased with provision of support within our home, as our son’s behaviour deteriorated. We are uncertain as to what changed, contributing to escalation of aggressive behaviour and property damage over several years. Onset of epilepsy? Tired of living with Mum and Dad? Other medical or mental health issues that he could not articulate? A cycle of incidences, remorse, damage, more incidences following which support providers withdrew workers who were being injured, police involvement etc that needed to be broken somehow. Changing situation that had crises that needed urgent responses.

Our son was moved into a Robust SDA house initially with 1:1 support. Sixteen months later, he is adjusting to life in this house with support. Our current challenge is that he is now only funded for 1:2 support, meaning there needs to be a cotenant to share funding. Due to his behaviour, it is not safe for support workers or another person to reside with him due to behaviour escalations. Three times since Jan 2025 we have asked for a review of decisions around our son’s support – each time the reports provided by Behaviour Support Professionals and Therapists appear to be ignored, decisions are made in regards to funding with no discussion (the phone call is to meet to talk about how to implement the funding, the decision is already made and cannot be changed). The risks for people in his life for physical harm are very high. He is at risk of greater restrictive practices. His tenancy is at risk for community fatigue due to the noise etc. The cost of the property damage to the existing house is borne by us (family). Each time is costly in terms of hours spent, reports prepared .

I have listed our son’s disability conditions. However he is so much more than this. He is a person with likes and dislikes, a sense of humour, a loving person who feels bad when he loses control of his emotions, who feels sad and confused when someone who has been in his life for a longtime no longer comes to visit.

We know what helps him manage on a day to day basis. That is a small group of familiar support workers so as few changes as possible, and with people who know his idiosyncratic communication style. This only comes with time and getting to know him well. A very stable

• routine environment.

His ability to choose activities and what and how he does them.

A level of support so the support worker is present and can notice small changes in his behaviour that may be indicating that escalations or losing of emotional control is occurring. There are strategies that can be used early to avoid the escalations and behaviour that lead to property damage, lead to injury, lead to the neighbours, calling the police, leading to all those things that make you feel awful about yourself, and that’s the trauma that keeps feeding into the cycle of behaviours.

Our son’s disability is permanent. The level of support he will require throughout his life will not change. He will always require assistance, prompting and supervision to complete everyday personal care tasks. He will always be dependent in domestic tasks of daily living. He cannot be left in a dwelling on his own and he cannot access the community with safety on his own. He can however develop friendships, he can be a visible and welcomed person within his community. He can grow and have a positive life.

Please consider this legislation in terms what it would mean to you if this was going to impact your family member, your spouse or yourself if you became disabled. Please do not pass the NDIS amendment Bill in its current form. We are asking that you keep the ideals of choice and control front and centre of the discussion, that the system can be reformed to increase consideration of the person with a disability’s individual situation and not an algorithm / computer generated bench marking model. No two people with a disability are the same. They only want to be able to live their lives in the same way as any other non disabled Australian person with the same access to community and services, and Human Rights. Don’t penalise them for being disabled.