Submission 1966

Dear Senate Committee,

I am writing regarding the Bill to change the NDIS.

We are not currently on the NDIS. Whilst my autistic level 2 + ADHD son would be potentially eligible, I was unable to cope with the paperwork: bureaucratic maze (also suspected AuDHD).. I made one call about it after he was diagnosed, and could not progress. I also consciously chose not to ‘medicalise’ his conditions at this time.

What is important, though, is for us to know that the safety net is there. He’s a young teen. At some point, I’m aware, like me, his mental health will shift and we will need more support. I also worry about his ability to meet self care needs down the track, and I’d hoped one day that some exercise physiologist support would be available to us. Because he clearly has a comorbid connective tissue or dyspraxia issue, but I don’t have the money or the capacity to get that diagnosed yet.

Several years ago we nearly bankrupted our family paying for OT Support, before his autism diagnosis, just to get the most basic adjustments at school. Diagnosis alone has cost us in excess of $5k.

I’ve taken a $70k pay cut from my postgrad qualified professional role just to support him. And it is always the mothers who pay the price of additional support.

What this bill does is:

• unequally impacts women carers
• unequally impact women with disability, as they push thru needs more and are almost always harder to diagnose
• undermines the separation of powers, by parking important substantive operative detail affecting participant welfare outside the legislation
• removes humans from the decision making process to a degree echoing robodebt and the immoral community wide life altering impact , with little to no control or transparency via ‘black box AI model’ decision making

Submission 1966

• removes personalisation, treating disabled people like widgets of production, by not adjusting care.

• does not allow for or capture the fluctuating nature of many disabilities with a ‘one session’ assessment

• does not respect or prioritise the voices of qualified professionals in the care picture, instead overriding medical opinion with administrative process with opaque rules.

*how can the onus be on disabled people to try other treatments, when these have not been defined? Is this undermining choice around medical care, or a subtle eugenics?

I think though what is even worse with this bill is the way government has gone about it, taking PR advice to slam disabled and particularly autistic people as bludgers, as sponging off the public purse. We are just a hard working middle class family with a kid with disabilities, trying to get by. We don’t need the stigma as well. We’re tired.

I’ve been hospitalised twice with mental health issues from carer burnout. I suspect there will be another of these sometime in my future. The impacts are real.

Please, in considering this bill, ask;

• Is it appropriate in a modern society to focus on reducing numbers with NDIS support? Why? Is that really the problem?

• Morally how can ndis support be being actively removed now, with the alternative foundational supports not existing and definitely not in place?

• does the bill allow a silent creep in the separation of powers, voting on something with insufficient operative detail

• does the bill reproduce any of the issues of robodebt? Is there robust proof about the guardrails that could protect against a robodebt like outcome for applicants? What is this? Where is it being communicated?

*why is the government spending more on legal fees FIGHTING ndis plans over actual real support than genuine reform - and why is this a valid choice?

There are many families that will make or break based on this billl. When you are taking about society’s most vulnerable, people are relying on you, on this committee, to be

Submission 1966

their voice. Please question, honour the voices, and please approach this with the gravity it deserves.