Submission 1548

Submissions on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Fen Spencer

26 May 2026

Introduction:

I’m and NDIS participant, on NDIS for ASD level 2. I’ve been on the NDIS for over 3 years, and passed my first review date and had a rollover for 12 months. Before I was on NDIS I had employment but after I had a breakdown working wasn’t sustainable. This caused catastrophic burnout and cognitive issues.

Before accessing the NDIS I was mostly housebound, I would occasionally leave for appointments and to go to the pharmacy and that was about it. I had little social contact even though I had had a decent social group in the past. I had no contact with anyone and no hobbies. I wasn’t able to maintain hygiene or nutrition or feed myself. Essentially I couldn’t manage the basics of life. Due to my knowledge as being previously employed as a registered nurse with a special interest in mental health, I pursued diagnosis. I was diagnosed as level 2 and got onto the NDIS.

I received funding for accessing the community. When NDIS pays for you to do activities, it’s really helpful but the access to OT and Physiotherapy have really helped me to rebuild my capacity. I still regularly access these which helps me to maintain my capacity. If that was stripped I fear I would go back to being housebound.

Summary of key points:

My first key concern is everything having to be directly related to the one disability that is listed. ASD is very complex, with common comorbidities and symptoms that aren’t commonly known like movement issues and muscle tone problems. There have been quite a few things I didn’t understand until working with an OT. I now use a walker to move around, thiis is due to a combination of how my ASD has interacted with other disabilities. It would be impossible to pull apart what symptoms are due to ASD and what is due to other conditions such as POTS and ME/CFS. My funding for consumables was able to be used to cover the walker even though inability to walk isn’t commonly known to be connected to autism. I fear this would be taken away with the changes.

I managed to get a fairly cheap walker but paying for that myself would have been impossible. I also use a wheel chair on an intermitted basis, as ASD is a dynamic disability. With the inflexibility the changes are bringing in, because I might not use it everyday, my wheelchair might be deemed non-essential and simply not covered by the NDIS. This isn’t how reality works.

Submission 1548

It seems like those making these decisions aren’t medical professionals and don’t have a medical backgrounds. Its understandable that not everyone knows the ins and outs of disabilities. However, it’s not understandable that the people who are making decision for people with disabilities do not understand these disabilities.

Secondly, the review process and the increase from 21 days and no answer being a refusal to 90 days with no deemed refusal is ridiculous. They now have a way to trap people in permanent review purgatory. It’s unbelievably irresponsible. If this is abused it would be an easy way to get around having to ever address anything. The review process is vital.

Thirdly, needing to have tried and failed every single treatment before accessing NDIS is a concern. There are treatments for ASD but no cure, it feels like another purgatory to trap people in. Without access to NDIS, I can’t access these treatments and without access to these treatments I can’t access the NDIS. It creates a loop.

My other disabilities can be life threatening if they are allowed to just worsen. This is not just a matter of losing my social sphere but this could have genuine medical harm if I am being dumped off the scheme. We can’t keep being told by the NDIA to access thousands of dollars of treatments and then come back to them. I barely managed to make up the $4000 to be diagnosed with ASD. I simply don’t have the money. The fact that people will be expected to access these treatments without funding will kill them.

Personal impact:

I’m afraid that my support coordination and support work would be affected. I need a coordinator to understand funding and the scheme, and to manage schedules and check in on goals. I don’t have the cognitive ability to manage this on my own. If this were to be cut I would be afraid I wouldn’t be able to manage any of this. Then I wouldn’t be using my funding which to the NDIA may look like further proof I don’t need it.

On an emotional note, this feels like I finally got to a point where I feel like a human being with a life, but now I can have friends again and can leave the house. I’ve just started to get this and now the rug is being pulled out.

Recommendations:

Ultimately these changes shouldn’t be implemented. The review process needs to be made much more transparent and very formalized, even if its increased bring back deemed refusal.

Submission 1548

There has to be consideration for the reality of access, especially for disabled people. You are dealing with peoples whose ability to access things is already less than the average person. All of this responsibility can’t be put onto the people accessing the NDIS.

As far as the cuts to community and social access brings concerns on human rights. People with less mobility than myself will now be isolated for most of their time which is horrific. We need to idea that because something is pleasurable or fun that it’s not a necessary part of life. Humans need socialization, it’s not asking much to be allowed to go out to a park or a cafe, its about being able to get out of the house and talk to people.