Tony is 63 and has Friedreichs Ataxia. This means he needs total 24-hour care to help with basic needs, and to communicate and interact with the world around him.
In what is emerging as its pattern, NDIS has cut the carer hours that he gets. He is no longer provided for night care, even though he can’t put blankets on if cold at night and will freeze. If it’s too hot he will swelter in the heat. If he spasms he could pull out his catheter which is very dangerous, and puts him at considerable risk.
This has been done, because NDIS has decided he “can use a phone.”
Tony is lucky he has a band of friends and carers batting for him. He needs their help, because it is difficult for him to know what is going on, almost impossible to communicate what he wants, and has severe memory lapses. their help is making all the difference.
The obstacle is the narrow definitions used by the NDIS, which are designed to exclude payments to as many as possible. In this system, it is not the condition of an applicant that counts, but a checklist, with no flexibility to meet specific conditions.
There is a growing list of casualties of this system.
Those fighting for Tony, are donating hours to cover the gap. This is not sustainable for the long run, and they are fighting to have the this turned around.
They argue that as a signatory of the United Nations articles of human rights for disabled persons, Australia has an obligation to meet the needs of those who fall under this category. It means that the system currently operating must be changed to one that guarantees the meeting of physical needs, social support and quality of life. Until this comes about, many Australians will not get to enjoy a basic decent life.
The point is, that who are disabled are not just people with disabilities. They are human beings with things they can do and dreams they can realise, if given half a chance.
Tony has built a home in Adelaide, and this is where he wants to stay. He does not want to be in an institution, and wants to have a life worth living. And why shouldn’t he?
This and other cases of people dealing with the NDIS, show that the only chance at justice is to fight back. If you fight hard enough, you might be able to force a concession through. Hopefully, this will be one of those times.
The disabled should not be forced trough this. They have a right to be treated properly and with dignity Australia should accept no less.
A petition is being circulated. You can access it through this link.