Autism diagnosis and reduction of therapy funding (Family or carer experience)

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1203

Submission on the NDIS Amendment Bill

Name:

I am a: Family Member (Parent) of two NDIS participants.

1. My connection to this issue My children are both Autistic, with additional diagnoses including Ehlers Danlos Syndrome. Their ages are 7 and 12 years old. They have significant social, emotional, self-care and sensory needs and moderate physical support needs. I am burnt out from my constant responsibilities of parenting, along with the additional needs their disabilities present. As well as working to afford the extra assistance we need and keep a roof over their heads. The navigation of the NDIS processes and requirements for them far beyond my capabilities and is a consistent source of stress and pressure.

2. My overall view of this Bill I feel that children and even adults with Autism are being used as a political “excuse” or bargaining chip, to justify the lack of informed and appropriate support and overhaul that the NDIS actually requires. The simple fact that those speaking about this bill and the changes in this Bill, are using outdated and disproven language about these people. Clearly shows a fundamental lack of understanding. I believe that more attention needed to be paid to previous findings and recommendations from the national enquiry into disability. The system needs to work for the disabled people in this country. Not be used as a reason to cut costs. Education and understanding are critical for all involved in this bill and in the NDIS. I believe that many of the changes proposed in this bill will have a detrimental effect to participants. I fear this bill has been drafted without foresight and for the fact that alternative systems to assist those who cannot access the scheme are not yet built or in place. Meaning there is no guarantee they will work or be able to support those participants. I beg for the committee to consider and consult with disabled people who have been crying out to be heard about what will actually help and work for so long. That this bill be withdrawn and re written with not just consultation, but collaboration from disabled peoples.

3. My main concerns Communication and accessibility

It is already incredibly challenging to navigate the NDIS. Even with support coordinator services it still becomes a stressful and overwhelming pressure. It is extremely difficult to gain answers or straight forward advice on how I can use our supports. How I can be flexible in what we have. And also, how to access the things we actually need. I have had multiple planners change and amend what we have requested in our plans and say that this will be easier and better for our plan. Yet still 12 months later be unable to use some of the funding because it is not relevant to what we need and have asked for. So therefore, not able to be used.

Administrative burden

I greatly struggle to stay on top of the needs for my children day to day But the added burden of ensuring that all therapists have provided constant evidence and reports to the NDIS is both exhausting and costly. Especially when I have been told several times in a planning meeting with the NDIS. That they did not read several of the reports. Having the same conversation end with “well you really should have provided more evidence”. Was an enormous blow to my already crumbling foundation of belief that I am coping with our situation. I have significant anxiety related to the administrative process after several years of navigating this system.

Loss or reduction of supports

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1203

My eldest child was diagnosed at 8 years old. We struggled and advocated to get that diagnosis. Which was a level 2. She is a very high masking child socially, but greatly struggles with sensory and self-care needs. Over the next 2 years, her difficulties increased dramatically and last year, her paediatrician and a team of specialists deemed that she has significant needs, and is much more likely a level 3. We submitted a functional capacity that stated she had significant distress because of her needs. She has an academic age of a far older child. But her functional skills for self-care and hygiene are closer to a 3-year-old child. I requested flexible support for therapies such as OT, Speech and Psychology. And asked for some support worker hours. We were given a support worker for 6 hours a week. Which is some help. But for a child who is 12 years old that I have to physically lift, shower and perform hygiene tasks on, usually while she is experiencing sensory meltdown. This feels low. My main heartbreak though, is that our budget for therapy was reduced from $15000, down to $9,000. We were told there was no evidence for an increase, and that psychology was not relevant.

We submitted over 60 pages of reports and assessments.

How can anyone believe that a child who’s disability level has significantly increased, does not have evidence that more support is needed. The evidence was significant enough for a paediatrician and Clinical Psychologist to categorically agree, but not enough for one NDIS planner.

We were given a PBS worker instead, which I did not want or ask for.

This PBS worker has provided 2 reports that were 5 pages long each. She engaged in a 30-minute conversation with me over the phone. And spoke to the speech Pathologist and school teacher for 1 hour each. The reports were basic and gave advice to assist, that were all things I already have in place. I was then informed she had spent her $15000 budget. And she could do more reports when the plan dates are renewed. I have been in the process of trying to find a new PBS worker and try to report this situation, but I am struggling to be able to get advice on how to do this and feel like I am powerless to navigate this process. I have many friends and family members in the same position, who have had similar unhelpful and costly experiences with PBS workers. These families all asked for small increases in flexible therapies, yet received PBS workers instead wiuth larger budgets allocated. They have all had limited help, at high cost to the NDIS. To say I am concerned, is an understatement. We have made appeals and asked for advice many times. No result or relief. I am drowning.

5. What I want the committee to understand Is that participants are generally far more likely to understand what they need than many of the plan managers involved. Yes there can be those who take advantage of the system for un needed supports. And Yes, the system requires more funding. But it is not Autistic people who are to blame for this. I believe that the NDIS needs an overhaul of its red tape filled paperwork heavy process. And that there needs to be a strong system of qualified people assessing needs. These things alone would save millions. The costs of having to provide incredibly detailed yearly reports from all therapists every year (which is taken from the NDIS therapy budget of the participant) is exponential. Especially when it has been publicly stated by NDIS representatives many times that they “do not have time to read these reports”.

6. My position on this Bill I believe the bill needs to be withdrawn and re written with the advice and collaboration of experts in disability and healthcare. Especially including those with disabilities themselves.

“I ask the committee to consider my lived experience, when reviewing this Bill.”