National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1228
Submission to the Senate Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations Bill) 2026.
I am the mother of a 25-year-old daughter who was diagnosed with autism at the age of 16 and started receiving NDIS support at the age of 22. I am also a clinical psychologist and a PhD researcher in the field of autism and mental healthcare for adults. I write primarily as a mother but will use the knowledge of autism I have gained as a researcher.
The main point I want to make is that it is the norm for autistic people to have multiple co- occurring conditions and challenges that, together, cause reduced functioning and disability. This complexity must be taken into account when assessing a person’s functioning and need for support. In my daughter‘s case, there are several neurological conditions (dyslexia, migraine, ADHD, and, once, loss of consciousness and fitting), mental health conditions (anxiety, depression, OCD, sleep disorder and probable bipolar disorder), and physical health conditions (the most debilitating of which is a hypermobility condition that causes chronic pain, low blood pressure leading to fainting, and chronic fatigue). All of these conditions are very common in autistic people – for example, the DSM estimates that around 70% of autistic people have co-occurring mental health conditions. It was actually in the course of assessment and treatment for these co-occurring conditions, that our daughter’s autism was first recognised. Despite consulting multiple practitioners about these conditions and trying various treatments over many years (including two psychiatric inpatient admissions, 10 years of psychological therapy, multiple medications and a course of TMS treatment) her difficulties persist – sadly, I think we have to consider them permanent now.
The result of all this is our daughter has very low functioning – she left school early and has not been able to start any tertiary studies (despite high intelligence and high grades at school until her mental health declined), she has been unable to maintain a job and now receives a disability pension, and she has a very limited social life. She lives independently because we bought a house for her to ensure that at least she always had secure housing, but without NDIS support she would not be able to live independently as most of the time she cannot manage the basics, such as food preparation and house cleaning, or organise all her therapeutic care and activities. This low level of functioning is due to the combination of conditions she has, all of which are very common in autistic adults. While our daughter really puts in the effort to improve things, engaging in all sorts of therapies and activities, she despairs about things ever improving and feels the loss of a “normal” life terribly. I watch her carefully and intervene if I think her mood is declining as she made a serious suicide attempt four years ago when despairing that her life was too hard and she had no hope of it improving.
I don’t tell you that last bit lightly. Imagine what it feels like as a mother, to have your 21-year-old daughter lose all hope and try to kill herself? I live in fear of it happening again, but this is the reality of the proposed changes to the NDIS. My daughter started receiving the NDIS after that suicide attempt and it really made a huge difference. She feels supported emotionally and practically and she now has some enjoyable activities and connections in her life. If you remove supports from people whose lives have been improved by NDIS, like our daughter, they will lose hope, with terrible consequences.
I therefore urge you to:
• ensure that the new assessment regime considers and includes the impact of combined conditions;
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1228
• ensure the assessment regime is flexible and allows input from providers and others who know the person well; • ensure support planning and provision continues to respond to individual needs and preferences; • ensure the assessment of functioning properly considers a person’s functioning without supports in the longer term; • not make blanket cuts to social support or individualised care coordination, especially for autistic people, as these are the main things they need and, for adults, they cannot easily be replaced by families. • not remove adults from the scheme if they have already been receiving support as this would be a devastating blow that will result in deaths; • fix the rorting without punishing disabled people and their families.
My final comment is that the proposed changes may result in savings to the NDIS, but there will be financial impacts in other areas that tax payers will still need to fund: hospitals, public mental health services, the justice system, the education system, the welfare system, the non- profit and voluntary support system, the housing system, and reduced taxation revenue due to former NDIS recipients being unable to work or to families needing to leave the workforce or reduce hours in order to support their disabled family member. Apart from stopping rorting and fraud, they are false savings made at the expense of the most vulnerable people in our society. Please don’t let that happen.