I am a 62 year old mother of a 33 year old son with moderate intellectual disability level 2 autism, dyspraxia, dystonia, moderate anxiety and nocturnal epilepsy I have a bovine aortic valve and my reality is that my wonderful husband and I will be caring for our beautuful 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 and 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 . There is often the phone call and emergency hospital care. There is 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 sponteneus freedom. We need to be on call and at hand to help him live a somewhat decent life and to remain safe. The current Ndis plan means support workers whilste helping our son to reach his limited potential helping him cook and shop and exercise under supervision.Making sure he is not isolated in his room for days on end ( who can he visit and who visits him) does not change the fact that His potential falls far short of a normal functioning safe reality yet in the current ndis scheme even before this horrific tightening he falls short of the criteria required to provide supported independent living. How far short must the NEW scheme fall and fail our sons and daughters.. We are lucky. Jack can be safe and supported and to a small degree somewhat independent whilste living with us but the current scheme does nothing to address the future for our son nor the relentless burden of care we carry. I fear dreadfully for the new scheme and the utter despair this will present to participants and families. There is no moral justification for failing this sector of society. They are our most vulnerable and yet here we are. Again. Don’t ever underestimate the toll. These diagnosis are not merely words. They are impactful and impenatrable barriers that seperate people from the normal human platform. They are barriers that produce major limitations extreme worry and physically exhaustion for carers. They are stress fractures that continually ache continue to deepen and are never truly healed. As time marches on our bodies ache as a reminder that we too will ultimately fail them. . The NDIS was proclaimed a beacon of hope to better the lives of our loved ones. They closed existing institutions and rolled out the red carpet as an alternative. Instead it became increasingly clear that the NDIS is a brutal battlefield poorly constructed and dismally managed rolled out full of gaps and holes and support structures that quickly buckled. Each new fix addressed none of the true underlying problems and instead pushed participants and carers to the brink.
Participants, now being punished for the gross mismanagement created by others, are left floundering in uncertainty with no back up 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 anyway they can justify by promising funnelled 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 triump card…… and the masses now cheer for blood .