Submission 44
Submission 44
him smoothly and to distract him when he’s being supported to do stretches which reduce pain (eventually) and resist severe contractures?
The Minister can’t know the intricate detail that informs how Eamon is supported as a unique individual with unique needs. Like every other human, Eamon’s needs and life goals do not remain static. Any ways of determining his needs at a particular time are incredibly complex. Who knew that his painful spasming would start up again during the day and night, when it had settled for a couple of months? No two days are the same in terms of Eamon’s needs. The only stable is that he needs highly skilled, reliable 24/7 support every day of his life.
We are frightened for others with disability who will get thrown off the NDIS when there is a lack of appropriate alternative supports.
People with disabilities and their families - sadly - have good reason to distrust promises made to them about the NDIS “enhancements” and alternatives .
Eamon and his family (mum, dad, grandfather, brother, brother’s wife, and his sister, aunties, uncles, cousins) strongly OPPOSE the BILL.
Whilst we have many concerns the ones which most alarm us are: s34A. The Minister’s new power to cut funding without appeal, the new functional capacity test and the loss of review rights, and the automated decision making and algorithms with no individual appeal, the cuts to social and community participation funding.
Eamon relies on the NDIS to fund supports which facilitate him living a life of his choosing, including contributing to his community in paid and unpaid roles. His engagement with his community, his independence and self determination, his workforce participation have improved astronomically since the life he lived pre NDIS. Except when there are NDIS Act changes proposed, he’s noticeably more contented, satisfied with his lifestyle, still learning and growing. Guests at his 30th birthday celebrations kept saying how much healthier and fulfilled Eamon is these days. Without the individualised supports from the NDIS, Eamon wouldn’t be living a life that’s closer to the lives his peers enjoy. He loves anything his peers are up to!
With the proposed cuts what must he give up: joining in with his mates playing AFL wheelchair footy? presenting at conferences and workshops in person to improve the impact of his advocacy and to facilitate improved opportunities for connection? connecting with nature, especially the Swan River in Perth, or one of Perth’s glorious beaches? getting to one of his many essential outpatient appointments at Fiona Stanley Hospital? accompanying his family on a short holiday down South in accessible accomodation so we can all be together (his brother and family live in Melbourne)? not being able to attend sailing with Sailability at Royal Perth Yacht club? Unable to self advocate because he no longer has sufficient support hours for his paid supports to act as “smart communication” partners? catching up with a friend at a bar? Unable to text his sister because he needs support to do that?
Submission 44
Reduced social and community hours, algorithms and inappropriate functional assessments, Ministerial powers that are quite simply unable to capture the unique human being Eamon is, unable to capture his individual goals, and to understand the very complex interactions between his extensive multiple disabilities and his very significant medical needs arising from the increasing impact of his disabilities as he grows older.
PLEASE OPPOSE THE BILL.
This bill is sucking all that was good, life changing about the NDIS. I was so proud to be Australian … was.
Australians were so proud of what we were doing as a country.
Please listen to people who know what they are talking about…like Eamon and Senator J.
Thank you.