National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711
Occupational Therapy Services
Date: 27 May 2026
To: seniorclerk.committees.sen@aph.gov.au; Minister.McAllister@health.gov.au; A.Albanese.MP@aph.gov.au
Dear Honourable Madams/Sirs and your teams,
Re: NDIS reform legislation feedback
Purpose of this letter I am writing this letter to advise you about my concerns related to the NDIS reform act, and make recommendations to increase the financial viability of the NDIS. Background I am an Occupational Therapist with 25 years experience in rehabilitation as well as Occupational Health and Safety at WorkSafe Victoria. I treat mostly NDIS participants with mental health and neurodiversity challenges. I sat beside the people who developed the original NDIS proposal. I have worked as an OHS inspector. My concerns with the NDIS reform legislation
- The assumptions underlying the reform legislation appear to be: a. “All NDIS participants, their families, allied health and providers are rorting the NDIS. Only lawyers and accountants can save the country. We must not listen to those rorters”. Hence there is only two weeks for comments on this complex legislation. Keep in mind, when Victoria changed its OHS legislation, there was a six month review period. And OHS professionals and businesses have the skills and capacities to provide feedback. While NDIS participants, their families and non- profit organisations who most often delivery support, do not have the skills and capacity to provide comment quickly. This is truly unethical and not in keeping with the spirit of the law. The purpose of the NDIS law is to support people with disabilities. b. “All families are happy extended family with excellent English skills, who support the one member whom they enjoy supporting because it gives them a reason to be – and they have plenty of money to spend on medical services.”
- The flawed basis of this reform is the assumption that most participants the only person in the family with a disability and the family is willing, able and eager to support them. a) Research shows • Most people with mental health challenges are married to other people with the same challenges. • The divorce rate among people with psychiatric conditions is higher than the general population • Family breakdown among people with psychiatric conditions is higher and places high stress on both family of original and their children • People with psychiatric conditions have lower rates of literacy
Letter – May 2026 Page 1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711
Occupational Therapy Services
• Most people with ASD are unmarried; only 5% of people with Autism are married • Most people with ASD have parents or siblings with ASD. Research indicates that approximately 60-90% of autism spectrum disorder (ASD) can be attributed to genetic factors. • While some people with ASD can listen, speak, read and write, those with lower functioning ASD are unable to communicate verbally, listen, read and write. Most people with ASD on the NDIS are lower functioning • Most of my participants with neurodiversity or psychiatric conditions are unemployed and struggling to maintain stable housing and attend medical appointment out of pocket expenses due to financial strain. • The Australian Government wrote “A person who does not have access to affordable, secure and appropriate housing may experience several negative consequences, including homelessness, poor health, and lower rates of employment and education (see ‘Homelessness services’, ‘Health’, ‘Employment” b) My experience confirms these findings. The reality on the ground is: • Most adult married participants with ASD or Psychiatric conditions are married to other people with ASD or Psychiatric conditions • It is rare to find a family where there is only one person with a psychiatric or neurodiverse condition. For example, o A single mother with ASD who has six children with ASD. They have no extended family support or friends. The mother had a temporary relationship with a man and now has an AVO against him for domestic violence. She is unable to work because of taking children to appointments and special school (and it took three years for a special school to accept her children because they were too low functioning for special schools). She is struggling to maintain safe and secure accommodation for her and her children; landlords are reluctant to rent quality homes to families’ whose children smash walls, flood the bathroom regularly and throw used nappies at the fence. o Parents who don’t speak English (low ability to read or write English) who have four children with a rare genetic condition that creates ASD-like challenges and intellectual impairment. They have no extended family support or friends. The NDIS says that as parents, they should be able to coordinate their children’s supports, but they can’t due to their own low English skills. They are afraid for their children’s future. o A single mother with a rare genetic condition leading to intellectual impairment (unable to read or write) with four children with ASD. They have no extended family support or friends. The mother had a temporary relationship with a man and now has an AVO against him for domestic violence. The children refuse to attend school and the mother doesn’t have the parenting skills to get them to attend school. o Two children with ASD level 2 and hypermobility syndrome – and their parents got tested and found they have ASD. They have no extended family support or friends. The daughter has multiple
Letter – May 2026 Page 2
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711
Occupational Therapy Services
medical conditions and frequent (expensive) medical appointments. o A couple who both have Schizophrenia. Both families refuse to have any contact with them. They are afraid to leave the house. Neither can work due to fears of leaving the house. The NDIS has given them minimal supports so they sit in the house which is becoming more cluttered and unsafe. o Numerous people with Schizophrenia who have unstable housing, no family, no friends – and turn to drugs to make their lives slightly better (temporarily) o A 50+ year old single man with no family who denies all disability and has burned down one private rental through unsafe smoking and is likely to burn down another given his challenging behaviours. o An older man with an intellectual disability whose entire family moved to Greece because they were tired of supporting him. o The list goes on and on
- The implications of this are: a. The inherent assumption that there is family and community support for people with disabilities is a fallacy. People with disabilities have skill gaps and cannot be expected to support other people with similar disabilities.
So what is this NDIS reform legislation doing to help people with disabilities? NOTHING. It is making a bad situation worse. What can be done to improve services for people with disabilities? As I wrote before, I worked for WorkSafe Victoria when the NDIS was being developed. I wasn’t on the team, but I advised them.
I told them that the system that works, both in Victoria and overseas (where I also worked as an OT in the Workers Compensation system), is:
- Early intervention for short-term conditions (at no cost because many people are unable to afford out of pocket health expenses. And if conditions progress without adequate medical support, there is a higher likelihood of chronicity. This link relates to persistent pain, but it applies to psychology too in article A and article B). a) This should be the responsibility of Medicare, but people with disabilities often have difficulty accessing this support due to: low English skills, paying out of pocket expenses, finding a doctor who is willing to take the time with a person who has a complex medical history, social anxiety around strangers and executive function. b) Recommendations: i) Support navigators who can support people with complex interacting conditions, temporary or low level disabilities to access the medical system and associated supports. This can be: (1) Organising appointments (2) Organising a person to accompany them (and transport them) to appointments (3) Organising and funding interpreters (4) Facilitating virtual consultations for people who live in “medical deserts” where there are few medical services (ie MMM4+) or people who are unable to leave their homes
Letter – May 2026 Page 3
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711
Occupational Therapy Services
ii) Identify a panel of doctors who are willing to take on complex clients (ie Bulk billing with higher fees) and guide participants to them. This may involve home visits and virtual assessments. Ensure these doctors are skilled and not incentivised in any way to deny disability. 2) Assessment that assesses the WHOLE person to determine what is “going on”. a) I am an OT, and I have assessed thousands of people. And in many cases I am the first person who gave the person a whole-body/environment/community review. And because of that I fed back information to the person’s treating team which led to improved medical treatment and no long-term disability. I recommend an OT complete home visits because people with psychiatric conditions and ASD often have low insight into their disabilities. I cannot count the number of people who live in squalid / hoarding conditions and didn’t know that their house was a health hazard. Or that they lived with a family member who was abusing them (ie they just kinda thought everyone’s mom gave them meth and pot (yes, that’s true) or that a tired parents can move a 12 year old child to live with a ‘nice man’ who likes to sleep with children (yes that’s true too)) b) Treat the WHOLE person – not just the one “disability”. People with psychiatric conditions, often experience social isolation and pain and 15 to 20% of people with ASD have chronic pain. Persistent pain is most common when there are multiple stressors including family breakdown, depression, anxiety, financial stress, housing stress, uncertainty about the future related to their condition, employment stress and no direction in life. This is so common that it is called the pain framework. See the image to the right. A PERSON IS NOT JUST A BRAIN, A BODY, A MIND and a SPIRIT. It’s a combination and must be treated in that way. If not, it’s like changing one tyre when three tyres of flat. The car isn’t doing to be functional. c) The Support Needs assessments but non-clinicians is going to become the next robo-debt scandal. They simply don’t have the skills to see through low insight, denial and family issues. 3) After assessment, then determine supports. a) Yes, this sounds similar to what’s going on now. But I mean actually read the OT’s report, and implement the OT’s recommendations. In the Worker’s Compensation, TAC or legal settings, the OT Functional reports are the ‘source of truth’. It’s only in the NDIS world that OT’s are required to write huge reports – and the Planners actually tell everyone they don’t have time to read these reports so they just look at the diagnosis and make a plan; the NDIS spends more money / time / lawyers on denying supports and refuting OT recommendations for supports. This money would be better spent delivering supports! I have read so many decisions which bear no resemblance to my recommendations and are hurtful to the participant and the family. The NDIS has caused so much damage to people. (a) A lady with medication-induced Parkinsons’s Disease associated with long-term use of psychiatric medications had the NDIS slash her plan to approximately 7
Letter – May 2026 Page 4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711
Occupational Therapy Services
hours a week and tell her to get a new doctor and new meds. She is more depressed than she was before she joined the NDIS. (b) One 44 year old married mother has early onset dementia and a genetic condition, is wheelchair dependent, has limited English skills, is incontinent and has extreme challenging behaviours at night. She gained weight and became too large for her wheelchair. She had her plan slashed the princely total of 7 hours of Support Work a week – and the NDIS told her to just rely on her family more and apply to replace Support Worker support for a new wheelchair. Her family were so stressed that her husband (who has minimal Englsh skills) was planning to leave Australia (vanish without a trace) because of stress. One daughter married at 18 to leave the house. Another is planning to marry at 18 (she’s almost 18) to leave the house. Her youngest daughter is mid-teens and will have to be involved in bathing, changing incontinence pads, lifting and advocating for her mother soon. After three years of fighting for her to get increased supports, she is finally getting sufficient supports. However the impact of her family will intergenerational as her children are marrying young and having children – and are carrying the gene. And they can’t afford genetic testing. And the trauma of watching their mother’s challenging behaviour will likely lead to lasting psychological problems. (c) One divorced mother with Schizophrenia who severely self-harms has been provided with the princely total of 7 hours of NDIS support/week now drives around Melbourne at night very quickly to escape the voices. Her adult children are terrified to be around her. She is facing homelessness because he cannot afford rent. She is a public health threat given her erratic driving. Taking away her driver’s license will increase self-harm and likely result in suicide. I am terrified of driving around Melbourne’s western suburbs knowing that she is roaming the streets in a fast car to out-run the voices. (d) The NDIS provides inadequate supports for people with severe, frequent and life-threatening challenging behaviours. By doing so, providers put their workers at risk. The actual providers are facing OHS prosecutions by doing what the NDIS funds them to do – unsafely. b) Also – if the NDIS has a concern with an OT’s report – PHONE THEM. Don’t just latch onto a typo or poorly worded sentence and use that to reduce supports. 4) If there are concerns about a decision, there needs to be a review of reviewable decisions. But just repeating assessments by unqualified non-clinicians is just going to lead to robo-debt. Do you really want the NDIS to become the new Robo-debt? It already has a terrible reputation. It will be the nail in the coffin. Then what will happen to the people with disabilities and their families.
Summary I recommend that the NDIS go back to the drawing board regarding this reform. The way it is currently written, it will lead to long-term problems for people with disabilities, their families, their friends, Support Workers and the general public. There will be deaths, including suicides. It’s time to return to the initial goal of the NDIS – to support people with disabilities. Not lawyers. Not actuaries. To support people with disabilities to live meaningful lives.
Letter – May 2026 Page 5
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1711