I am a 62 year old mother of a 33 year old son with moderate intellectual disability level
I have a bovine aortic valve, and my reality is that my wonderful husband and I will be caring for our beautiful son until we are either incapable due to health and age or dead.
We continue to drive, help dress, provide for , supervise financially, socially and medically. We spend every weekend driving over 40 mins each way for him to meet his girlfriend of ten years and we care for her every second weekend alternating his care on weekends with her parents. We drive him to his voluntary 3 hour supervised work position every week and we often taxi him and his girlfriend to their social engagements on weekends. Going away takes months of planning; despite the hurdles and planning nightmare, we have made this happen for our own well-being. Holidays do not come without cost. There is always the worry .
The phone call and emergency hospital care—there’s always the teetering on the edge. We create our happiness and relish the fleeting pockets of freedom where, for some short time, we get to live in our moment blocking out that background noise.
We will always be carers: For our entire lives. We have no spontaneous freedom. We need to be on call and at hand to help him live a somewhat decent life and remain safe.
the current NDIS plan means support workers whilst helping our son reach his limited potential —helping him cook and shop and exercise under supervision.—Making sure he isn’t isolated in his room for days (who can visit? who visits him?) doesn’t change the fact His potential falls far short of normal functioning reality yet even before tightening, it fell short of criteria required providing supported independent living. How far must new scheme fall failing sons daughters?
We are lucky Jack can safely & supported with small degree independence while living us but current scheme does nothing addressing future nor relentless burden care carry I fear dreadfully new scheme utter despair present participants families there moral justification failing sector society They most vulnerable here Again Don’t ever underestimate toll These diagnosis aren’t merely words; they impactful impenetrable barriers separating people from platform human normalcy Barriers produce major limitations extreme worry physical exhaustion caregivers Stress fractures continually ache continue deepen never truly healed As time marches bodies remind fail them The NDIS proclaimed beacon hope better loved ones closed existing institutions rolled red carpet alternative Instead increasingly clear that brutal battlefield poorly constructed dismally managed full gaps holes—support structures quickly buckled Each fix addressed underlying problems pushed participants carers brink
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 4238
Participants, now being punished for the gross mismanagement created by others, are left floundering in uncertainty with no backup plan… It’s a crying shame … literally ….. and in the media and on the poli platforms arrogance stands on display sword in hand covering up the mess they created by attacking the very people they proclaim to protect…. the shift now lies in any way they can justify by promising funneelled funds to mainstream heart ache…. aged care improvement… affordable housing …. promises you and I both know are already broken …… in this facile rhetoric of false promises designed to placate the masses they have managed to blur every other dismal failure behind hateful accusations of blame heaped upon the disabled and trumpeted restoration of all societies ills by dismantling this safety net for a cost-saving political triumph card……. and the masses now cheer for blood .