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

Submission 2240

To whom it may concern,

I am a NDIA participant that has Complex Regional Pain Syndrome (CRPS) which is a permanent and significant progressive condition. I live with my Husband who is also a NDIA participant with a diagnosis of Autism Spectrum Disorder level 2 (ASD) of which he has received in adult hood in his late 30s.

With these changes that are coming in to affect, they are going to affect myself and my husband significantly, If I lose my supports I will be confined to my bed or my recliner, My husband is at risk of Autism shut down with all the changes coming in to affect, My social life is what keeps me going, I enjoy going to my social community groups through the week. NDIS is supposed to be “choice and control” Losing community access is NOT choice and control; it’s the government trying to control what we are and are not allowed to do. Changing personal care rules “if you have family members at home to perform personal care” that will NOT work for me as I need my husband and a support worker to help me out of bed and both to help me with me personal care supports. We are at high risk of mental health issues and relationship breakdown, if this was to go forward. My memory is not great due to brain fog and working and disorder related to my condition CRPS, if I don’t have a support worker with me I can either forget to take my medications or I will double up on my medication, that can cause high risk compilations to my health.

Changing the funding for wheelchairs, home mods and assist technology. You are putting myself and other participants at high risk of falls, being restricted, house bound, pressure sores, unnecessary progression in condition and much more.

My current disability listed is Epilepsy and primary disability is CRPS we have provided diagnosis evidence. We have sent all relevant reports to the NDIA still with no change and we frequently experience data entry and human error with evidence provided and the outcome listed in the plan.

With no plan review options available this will not help fix the administration and/or human errors that arise.

This is a basic out line of what CRPS is, I can provide more information if you need.

Complex Regional Pain Syndrome (CRPS) is a chronic, rare nervous system disorder. It causes severe, burning pain, swelling, muscle spasms and much more. While it typically starts in one limb, in rare cases, it can spread throughout the body, causing widespread, uncontrollable tightening or twisting of muscles (dystonia).

CRPS dystonia (Complex Regional Pain Syndrome with dystonia) is a neurological complication that develops in about 25% of CRPS cases. It occurs when an injured limb—already suffering from severe, chronic pain—develops involuntary, sustained muscle contractions that force the limb into abnormal, painful, and often fixed postures (such as a clenched fist or a twisted foot).

Autism Level 2 is officially classified as requiring substantial support. It falls in the middle of the autism spectrum. Individuals at this level have noticeable challenges with social communication, adapting to change, and managing daily routines, even with support in place.

Kind Regards

NDIS participant