National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2330
Submission to the Community AƯairs Legislation Committee on the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. , 31/05/2026.
To introduce myself and my background, I am a 46-year-old Social Worker (BSW, UWA 2002). I have worked on and oƯ in the disability sector my whole adult life, as well as being a carer. While I was studying, I worked with profoundly disabled teenagers who were living in supported accommodation under the WA state funded Disability Services Commission. After graduation, most of my initial experience was in out of home care for children and young people in the care system. I worked as an LAC for Disability Services Commission on a 12- month contract in 2006. Later, I was employed by Mission Australia as an LAC for the NDIS WA roll-out from 2019 to 2021. My daughter and brother both lived in the roll-out area (Midland and Ellenbrook) and were some of the first NDIS participants. I then worked as a Support Coordinator from 2022 to 2025 and now I work for a registered provider in a client liaison role. I am also a mother of 3 girls. Myself and my eldest two children (age 17 and 14) are all neurodiverse but are not NDIS participants. My youngest has a non-NDIS-eligible genetic disorder and also has autism level 2 with selective mutism, meaning that she is non-verbal except at home and in the homes of certain relatives. I also have a brother who is on NDIS, and is autistic with type 2 bipolar disorder, and ADHD. I am NDIS nominee for both family members. My experience with the state-funded hospital outpatient system, with my second daughter who has an autoimmune endocrine disorder and my younger daughter who has a genetic growth disorder has been excellent, despite delays due to under-resourcing.
Some of the stated intention of the amendments are to: 1.Reinforce the boundary between the NDIS and mainstream services. This concerns me, as in my experience, services are already heavily siloed and this creates gaps. The risk is high for the most vulnerable and complex participants to fall through these gaps. One participant I worked with as a support coordinator was a man who had a leg amputation. He had a significant health episode that resulted in him being hospitalised for several months, having a stroke which caused vision loss and cognitive deficits and then also losing the second leg. The hospital did not apply for his change of circumstances as they were waiting for him to stablise and there was a plan for him to be discharged to rehabilitation from hospital. I put in his request for a change of circumstances when he entered rehabilitation, and ultimately we waited about 9 months for the COC to occur. This meant that he was discharged home without the proper equipment and without an accessible bathroom. His wife had to shower him in a loaned hospital shower chair, over the bathroom floor drain. Had the participant been in hospital when the COC was submitted, he would have been referred to the hospital team at NDIS, but because he was in a state government funded medical rehabilitation facility, he was not referred via this pathway. Because there is no mechanism within NDIS for anyone except Members of Parliament to be able to contact NDIS decision makers such as planners, the only pathway open to this participant to have their matter seen in a timely manner was to have me contact his local MP on his behalf. The hospital
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2330
was correct to wait for the patient to stabilise and to be seen by the rehab allied health team. There was simply no correct pathway that would have avoided this issue.
- More consistently assess if the NDIS is the appropriate system of support and if treatment can alleviate or remedy an impairment. As a parent, this point raises concerns with me. The process of meeting access is already extremely expensive and time consuming, and I am certain that there are already people not able to meet NDIS access due to their inability to access a diagnosis. When I was a child, our financial situation would never have allowed my mother to do what I have done to get access to NDIS for my daughter. Although I identified that my brother was most likely autistic when he was 10, he waited until age 19 to receive his diagnosis, with the support of his (adult) siblings. My daughter was on the NDIS for early intervention from age 3 due to having needs considered too high to be met through the state funded allied health services. The NDIS rejected the application filled out by the state funded Child Development Services, which forced me to spend $1000 on a full GriƯiths Assessment by a private paediatrician. Once she was accepted, her NDIS funded speech therapist was able to get her a place in kindy in the (state funded) Language Development School. The school psychologist was able to diagnose her selective mutism, which was free. The LDC was the best, most supportive experience we had in her early childhood, although she was spending almost 3 hours per day on the bus to get to and from school. When she was 5 I revisited the paediatrician because I believed that she was autistic. The paediatrician completed an updated GriƯiths assessment but disagreed that she was autistic, even though her social and emotional development was below the 5th percentile, she was seen lining up and making patterns with her toys, and she was mute in public. This cost me another approx. $1000. In grade 1 she entered the local public school, but our local school is huge and noisy. The primary school has well over 700 students, and the school has a high proportion of indigenous, non-English speaking and economically disadvantaged students. The school is under- resourced for the level of need. The school’s disability oƯicer told me that she would not consider sending her own son with special needs to the school, because it would be too hard to keep him safe. He attends a specialist school. My daughter was non-verbal at school, completely overwhelmed, and terrified of the school bathroom due to the noise. She came out of class with wet pants at least weekly for the 6 months that she attended the school, and her teacher had no understanding of her needs. Her dad and I quickly pulled her out of the school and put her into a small, low-cost Catholic school. With my health care card discount, we paid approximately $1000/year for her education, which we would not have done had she not had disability related needs that the public system was not resourced to address. At age 7 she lost access to the NDIS due to her age, and I had her GP refer her back to the state funded Child Development Centre. After a 14-month wait, we saw the speech therapist who felt she was autistic and referred her to the state funded autism service. After another 12 months on the waitlist, I began to be concerned that my daughter would start high school before she received her assessment and diagnosis, so I began to look for a private paediatrician. After this point it took a further 12 months to find a paediatrician whose books were open, and to be seen. It cost another approximately $4000 (as a now single mother) to have her assessed and then almost 12 more months before her request for access was assessed by the NDIS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2330
These costs and others have eaten heavily into the my divorce settlement, which is my only nest-egg. After this, we waited almost 12 months for her access request to be processed by NDIS. She had one 12 month plan that went smoothly and then her plan inexplicably was returned with $0 funding attached. It took 4 months, countless complaints and the involvement of my MP to get the error remedied and her funding restored.
- Tighten the criteria around unscheduled reassessment requests, while ensuring people with significant changes in support needs can still request plan variations. This point is of concern to me, as it removes the opportunity for individuals to have decisions made by the NDIS reviewed internally. This represents a reduction in checks and balances for a government department and appears to me to be a sharp practice, which would be unacceptable in the private sector. My organisation is required to undergo annual NDIS registration audits where the auditor checks all our practices against the NDIS Practice Standards. Who will fulfill this role for government decisions if participants are not able to access internal reviews of decisions? It is my personal experience that governments, especially Federal governments of any makeup, have frequently put lives at risk with decisions that do not reflect the needs of the community. Examples include: -robo-debt, -the decision of the Morrison government obstruct access to health care for oƯ-shore asylum- seekers, which almost cost the life of 4-year-old Tharnicaa Murugappan, and
- lives lost due to the long-term underfunding and regulatory failures uncovered by the Royal Commission into Aged Care. When the government refuses to listen to experts and those with lived experience, it typically results in worsened health outcomes and deaths, for those of us subject to these paternalist decisions.
I’d like to end by sharing some of the comments that I have seen published in public comment sections on social media and collected. These are de-identified by me, but they were also published in unrestricted public comment sections on Tiktok and Facebook. I have been told that the thoughts being shared in private social media groups and in-person conversations among participants and carers are far more distressing. W: “My son who lives in SIL has just received a new plan with his 2:1 overnight supports reduced, despite supporting evidence of ongoing need. No one is safe from cuts, it would seem – my own son’s safety and the safety of the sole support worker who will be placed with him on these shifts is at stake, all in the name of saving some dollars. Risk management does not come into play.” B: “I think that the government and media demonising disabled people, NDIS and also cutting NDIS is eugenics.” J: “What hope do they have?” J-J: “Certainly has made me reconsider how my disabled child and I will leave this world.” JA: “Robodebt 2.0 is go.”
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2330
L: “This is what they want. For us all to disappear/die. Good riddance is what they will say.” AD: “And they know if from the royal commission, they choose not to enact the recommendations, or work from the data.” KS: “Eugenics.” JF: “I am a participant and the changes to respite have left me in a terrible situation. I can’t escape my housing situation, and I am so burned out and dysregulated, and my sensory overwhelm is too far gone and I can’t get any help. I had dark thoughts cos the pain I am living with is too much.” BB: “It is something I am worried about for my young adult child. The supports funded have made such a big diƯerence, if they are removed, I dread and fear the outcome. Just when I thought that being an older parent with extra care responsibilities couldn’t get any worse.” JD: “My hubby will have to go into care if they cut his plan, as I am aging and I can’t carry a heavier load. It’s carers who will suƯer.” JA: “The administration of the NDIS is broken. As OT’s we spend more time and money justifying clearly needed supports than delivering direct supports. We didn’t get into OT to spend hours writing reports. We did it to have a positive impact with those with disabilities. This week alone… “Not enough evidence has been provided to show why client x needs a wheelchair.” Client x is a paraplegic.” KB: “I have sat in a few meetings now with participants who have said that they would rather die based on NDIS decisions and reductions in supports.” RS: “I went through a whole depressive episode last month with the plan changes and how it eƯects my adult autistic child. Being denied services because he isn’t deemed disabled enough, and I am in carer burnout trying to find help and being told there isn’t any.” MH: “They know nothing about living with or supporting people with disabilities. They just see $$$$$ but if it was a love of one of them, I bet funding would not even be questioned.” CH: “So when vacation care won’t take my son and NDIS cuts his funding and I can no longer work, is that an everyday parental responsibility?” PB: “But that is what Mark Butler wants, a dead person does not need care. The big issue will be the unemployment rates will be sky high and then that budget will blow out.” RA: “The way some toxic ableists act, I sometimes wonder. It’s almost as if bullying folks into taking that option [suicide] is considered a goal.” WS: “It definitely seems like disabled people are having a longer life expectancy with the NDIS and it is costing much more than was expected. Things like not funding an appropriate level of care is what meant Anne-Marie Smith died.” NJ: “I was on the dignitas waiting list before I got on NDIS. I will place my name on it again if I have to go back to that living death.” MR: “I have got to admit, the thought (of suicide) has occurred to me. To go back to just barely existing again is depressing.” KS: “Eugenics.” AC: “I am part of the disability pages and I have listening to more and more participants and families despair over the NDIS changes. I am seeing people who have already had desperately needed funding slashed. The government has undone years of advocacy and acceptance. It is no wonder that participants feel that there is no future for them.”
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2330
MW: “We asked about voluntary assisted dieing, and they said no.” EE: “MW, me too.” VF: “I tried too and they said I don’t qualify.” L: “I wonder if they will track the loss of life for the 160,000 people they are kicking oƯ NDIS. Life = less than gas profits, I guess.” SHS: “I think these stats (referring to deaths of participants) are exactly what they want.” RE: “I bet the numbers (of deaths) are higher than what is recorded here. I know many people who have been suicidal due to NDIS, I attempted twice in 2023.” TB: “I fear I will add to those statistics.”