“Like most parents, my mum wanted to know that I was okay. But unlike most parents, her middle-aged son needs round-the-clock support from others, to stay alive.” Our good friend Dr George Taleporos has an important message for NDIS decision-makers, following the recent death of his Mother. “When we say the NDIS is for 450,000 Australians with disabilities – we are leaving out millions of family members who rely on the scheme to provide them with the assurance that their loved ones are going to be okay when they die.”
On Saturday, my mother, Kathy, lost a very long and painful battle with cancer. I am both devastated to have lost my mum and relieved that she is no longer suffering.
She loved telling people, often complete strangers, that her son was a doctor. Making sure that they knew not to talk down to me, underestimate my intelligence or mess with me because I have a disability. An approach, some might say, that I have carried through in my dealings with the able-bodied world throughout my life!
Her biggest concern in life was that her son was safe and that people were “taking good care of him.”
“Who is with you… You’re not alone are you?” Was the first thing she would say to me whenever we spoke on the phone. She was constantly fretting about my care, even though my care team were doing a good job. But based on the not so sensitive or subtle feedback she would often come out with, clearly not good enough, in her mind.
Losing a parent is a deeply personal experience but sometimes, as the adage goes, the personal is political.
Like most parents, my mum wanted to know that I was okay. But unlike most parents, her middle-aged son needs round-the-clock support from others, to stay alive.
When we say that the NDIS is for 450,000 Australians with disabilities we forget about the millions of family members who rely on the scheme to provide them with the assurance that their loved ones are going to be okay when they die.
It’s another reason why we must keep advocating for an NDIS that ensures that we have the support that we need to live independently in the community and not be forced into living situations where we are unsafe or unhappy. That’s not too much for a Mother to ask.
As politicians, bureaucrats and planners make decisions about our lives and what is reasonable and necessary, I hope they can think about people like my mum Kathy.
Goodbye Mum, I’ll be okay.
Dr George Taleporos is a disability rights advocate. He has over 20 years of experience in the disability field, focussed predominantly on advocacy, human rights policy and practice, service development and management. He has a PhD in the field of psychology, a Graduate Diploma in educational psychology and Honors in sociology. Dr George is the policy manager at Summer Foundation, the Chairperson of the Victorian Disability Advisory Council and an opinion writer for Every Australian Counts. These are his personal views.