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 who has Complex Regional Pain Syndrome (CRPS), which is permanent and significant progressive condition. My husband also lives within me; he’s another NDIA participant diagnosed Autistic Spectrum Disorder level ASD received adulthood late his thirties due to changes coming affect significantly myself him both. The changes are going impact us greatly if I lose my supports will be confined bed recliner My husband risk shut down all those changes affecting him Social life keeps me going enjoy week attending community groups through week. NDIS supposed choice control Losing access NOT choice not government trying controlling what we allowed do Changing personal care rules ‘if you family members home perform personal care’ won’t work need help from husband worker get out bed both helping personal care needs We high mental health issues relationship breakdown this forward memory brain fog working disorder related CRPS don’t have support worker forget take medications double up medication can cause serious complications on our health changing funding wheelchairs, mods assist technology putting ourselves other participants at high fall risks being restricted house bound pressure sores unnecessary progression in conditions much more current disability listed Epilepsy primary disability CRPS provided diagnosis evidence sent relevant reports NDIS still no change frequently experience data entry human error with evidence outcome plan without review options available fix administration or errors arise This basic outline of complex regional pain syndrome (CRPS) chronic rare nervous system disorder causes severe burning pain swelling muscle spasms and more typically starts one limb rarely spreads throughout body causing widespread uncontrollable tightening twisting muscles dystonia. Dystonic CRPS Complex Regional Pain Syndrome with dystonia neurological complication develops about 25% cases occurs injured limbs already suffering severe chronic pain involuntary sustained muscle contractions force the limb into abnormal painful often fixed postures such clenched fist twisted foot Autism Level officially classified requiring substantial support falls middle autism spectrum individuals level noticeable challenges social communication adapting to changes managing daily routines even supports place Kind Regards NDIA participant