National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 108
Submission to the proposed NDIS legislation
I am representing my 42 year old daughter who is diagnosed with Autism Level 2 and lives with mild-moderate intellectual delay (IQ of 52). There has never been a time in our lives when we have not been part of the disability sector in some way. We participated in early intervention programs, in specialist classes in primary school and high school. She has always received some level of disability support from the government whether that was from child disability allowance as it was called then or now the disability support pension.
As parents we wanted the very best chance of being independent. As a result, I did not work full time until she was in high school. We were adamant about the type of education we wanted and chose an inclusive setting. We built work experience into her school program from year 7 and some of our friends volunteered as teacher’s assistants in the absence of paid assistants. We firmly believed that this would give her the best chance of working.
As it turned out we were right as she gained employment after school that worked out well for seven years when the place she was working got new management. After that she had a series of jobs and some time without a job and finally secured employment for 2 days a week and she has been in that job for the past 13 years.
We also were concerned about where our daughter would live but were concerned about group homes and the like. We wanted choice. We were very fortunate because circumstances arose whereby, we could purchase a courtyard home within driving distance from our home for her to live in. We bear the costs of that. Initially she was able to live there because of the support of a school counsellor who needed a place to live and who offered to live with her.
When that person left, we tried a couple of other sharing situations but none of these worked. Our daughter was too routine driven and expected others to fit into her routine. Then came NDIS which has been an absolute game changer for both her and us.
As a result of her birth year, she was one of the last group of people to be onboarded to NDIS however we have always been very appreciative of the funding she has and is receiving. It has given us as increasingly older parents a degree of independence and she has gained both independence, confidence and growth in skills. We have begun to see some growth in thinking, in being able to communicate her opinions (wants and needs), she is beginning to understand the value of money (you need to save for things) and to assist in planning her own social activities (invite a friend to do something). Just in the last 12 months she has started to call me just to say hello like you would expect any daughter to do. I think this is fantastic. For the first time, I have felt like just a mum and not a carer. She has grown her fitness level, and swimming has been something she finds pleasure in. Between us we pay for exercise physiology regularly, a gym membership and swimming lessons). This has been to reduce the likelihood of other medical conditions that would put further stresses on caring for her as well as the health system. She is now in a healthy weight range. Recently, she has been able to travel alone by bus for a “holiday”. This means staying with our friends in Wollongong and joining us at the South Coast a few days later. She catches the bus to and from work. However, all this growth in the past 10 years does not take away her need for support from us or from support workers. It has only been achieved because of the hard work and dedication of our support workers, her OT and Speech Pathologist.
Our daughter is very fortunate to have been blessed with a strong support network in our friends and people from our church as well as some family members. Together we have worked with NDIS support so that she can become who she is today. We could not have achieved this without NDIS support, but I think you can see that we have not relied on NDIS alone nor expect to.
Independence is not something she will ever fully achieve, her literacy and numeracy whist improved is not functional and details become confused, like the bus stop she read as being closed but missed the detail until…). Her success also rests strongly on how secure in the world she feels. She can become anxious about things that don’t concern her (like someone outside our family’s funeral arrangements). Things that would not necessarily bother you or I will fester in her until she can’t cope and melt downs. At one stage she was fixated on the light on the smoke detectors, believe it or not that took quite a lot of working out including a visit to the fire brigade. A melt down at 42 is not pretty and difficult for us as parents to cope with. However, the having one of our support workers being able to speak into the situations and help apply the suggestions of both the OT and speech therapist (who work together) we can limit the number of melt downs.
Changes to NDIS legislation and my concerns
- I am concerned about the amount of time given for the Committee to consider the changes to NDIS legislation given that is “landmark legislation to reform NDIS” I believe that 2 weeks for community submissions and the Committee having to hand down its findings by the middle of June is very little time for good consideration of the proposed changes.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 108
- Access – I am concerned about the new functional assessment and the possibility of not receiving access as the tool used may not reflect true functionality. I am concerned about losing access to the scheme because in our case the disability levels are mild/moderate, but those terms do not reflect true functionality.
I am concerned that if our daughter that even if our daughter is assessed by the new tool as requiring NDIS support it will be whittled down to the bare minimum and if she is assessed as too functional for support that she will lose the skills she has and without any support at home would need to return home which would be a backward step for all involved (I am close to 70 and my husband is already). I am concerned that there will no supports for her to access should she deemed ineligible and in the long term I am concerned for her future when we are no longer able to care for her. I am concerned that no-one miss out. On numerous occasions I have heard the Prime Minister use that phrase however, I feel his words are empty as these changes are about getting people off NDIS and cutting back funds for those who remain. The Prime Minister and other Ministers insist that they want to make the NDIS sustainable into the future but because of likely decisions resulting from this new legislation, the conditions for people living with disabilities and families supporting them are likely to be eroded. It appears that there was a fundamental misunderstanding about the needs and the number of people with disability in the Australian community.
I am concerned that the use of such a tool removes the person and individual needs from the process. I am concerned that this is the only basis on which access will be granted with no input from OT’s or other professional reports. Taking into consideration individual circumstances and needs is the only way to give real choice and control back to individuals and families and gives the participants the best opportunity for success and thriving.
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Planning – I am concerned about the proposal in this legislation that allows for the Minister or any future Minister to determine and change levels of funding without the need for further legislation. I am concerned about the move away from personalised planning further eroding choice and control. It is a basic human need to be able to experience enjoyment, to be in community with others and to feel a sense of satisfaction that you are living a good and fulfilling life into which you can contribute. This legislation threatens to place people in a situation where these experiences are denied or at best limited.
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Fraud – I can only speak from our experience, and we have always been very careful about how funds are spent and even when our Exercise Physio was refused and I was told by some providers I could use my budget for that, I said that I had been specifically told by the LAC that I could not. I argued with service providers. I therefore resent the inference that we are in some way responsible for fraudulent behaviour and as a result greater control needs to be taken to prevent that fraud. I want to have the flexibility to use providers that are best for us and our daughter. Currently, we use all NDIS providers but have in the past used non-registered providers because they were personally known professionals prepared to work with us and not generally available to the public. We did not, and people with disability did not create the fraud but we are somehow, intentionally or not, made to feel responsible for it. Please can the government consider other ways of dealing with this.
Thank you for taking the time to read my submission.
Kind regards
21 May 2026