sibling’s experiences with dystonia and societal ableism

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

NDIS Submission: (Securring the NDIS for Future Generations) Bill 2026 - 27th May 2026

to whom it may concern,

i am writing on behalf of my sibling sam petersen, my family and all members of our community.

a successful ndis affects all of us.

i understand that the ndis is a relatively new aspect of our government and with that comes trial,\nerror, teething issues and feedback.\my sibling and i are here to give some vital feedback.\nsam has dystonia which severely affects their mobility and speech.\nas a child growing up in the 80’s and 90’s i recall my sibling being excluded, marginalised and not\ngiven opportunities. it was a very bleak time for people with disabilities. what is most concerning is \that i grew up with a sense that this was all “normal”. fast forward to 2026 and the world must look a \whole lot different, right?!\

i think a huge part of the debate going on about the ndis is that we all can’t see how

National Disability Insurance Scheme Amendment (Securing the NIDS for Future Generations) Bill 2026

Submission #4359

I am a working taxpayer. My taxes go toward funding the NDIS. I would not for a second swap places with my sibling so that I can “reap the benefits.”

No. I will continue to live my life, pay my taxes and be so bloody grateful for my privilege.

Let’s look for other areas we can save money: unnecessary admin tribunals where they make people jump through hoops to prove their disabilities, registered provider companies charging for support ource page was too garbled to confidently reconstruct structure - see notes below. that NDIS participants never received, goods and services that are suddenly priced higher when “NDIS” is mentioned…

Let’s wake up. Let’s think very carefully about how we move forward. Let’s progress.

Thank you for taking the time to read my submission.

Please feel very free to communicate with myself and my sibling going forward.

Sincere regards,

Amelia Thomas