Keep Tony at home, fair play for all on the NDIS

claire-louise McCrackan
claire-louise McCrackan 271 Comments
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Tony has been unfairly assessed by the NDIS. He is a 63 year old man with Friedreichs Ataxia. He is awaiting a review but currently doesn't have enough hours to live safely at home.He has lived there for 35 years in a vibrant community.He is fighting for 24 hour care as he is fully dependent.He needs carers to assist with everything especially communicating and interacting with the world.Yet they ask him"Can he use a phone" I want dignity for disabled people and i want the NDIS to understand and communicate better with the people they represent..all the people.Tony cant put blankets on if cold at night and will freeze.If its too hot he will swelter in the heat.If he spasms he could pull out his catheter which is very dangerous.We have to go to a review because of the lack of understanding about his condition. He has memory issues but he is very much present with am amazing smile and a wonderful sense of humour.Too many people are being let down by ignorance and its time for recognition of that and change.Under the new system Tony has less hours than he had before and no night carer.He is meant to be left alone all night. Unable to move if he vomits he could die.We are fighting for him and his team of dedicated carers are fighting hard and donating hours to keep him safe.He has a full life and he deserves the right to stay in his own home and for that to be his choice.We in Australia are a signatory of the United Nations articles of human rights for disabled persons.That includes all disabled persons.Tony needs the care he needs to live the life he chooses. The system needs to change for everyone.Without his carers he will receive only the care for the most basic needs no social support no quality of life.Just treated like a house plant fed and watered and forgotten.Stand up for him and for all people who need a voice on this issue.Tony was a graduate from Prince Alfred college, he was an equestrian a proficient sailor. He wanted to be an archeologist.He was accepted in accounting at a university but couldn't go because "it was upstairs"He is so much more as all disabled people are more than the definition of their condition.But their condition defines their life and thats not always the reality.Not gender not race not sexuality and not by disability either but rather by what we all can do which is what really counts.He has built a life in a central Adelaide community and thats where he wishes to stay, and so he should.We want a voice for him and he to live his life his way. We want a voice so others can also see change.

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