So there is rorting in the NDIS system?

I am surprised. I am shocked. Who would have thought it was even possible? 

Pardon the sarcasm. I know people in the "advocacy" area who said, right from the start, that the way the system was set up this was going to happen. I knew it was going to happen. We all knew it was going to happen because it was already happening.

Long ago now I worked in a school for profoundly physically and intellectually disabled children. The parents who made the most noise then were the parents who got the most help. The parents who did not complain were those who got the least help. Sometimes the parents who complained the least were those who needed the most help.

I had one child whose mother spoke no English. His father spoke very little English. This child's brother, a boy of eleven was the one who had to deal with everything. He was a lovely boy and he did his best but I knew the family needed more help than they were getting. Quite apart from anything no eleven year old child should have to take on the level of responsibility he did. 

I wonder what would happen now under the new NDIS system. There is far more paper work, form filling, reporting back and more than there ever was before. All this is essential if you are going to keep your funding. 

For those really in need this can be a constant worry. I know an eighty-eight year old woman who is trying to keep up with all this. Her daughter, now in her fifties, is so severely disabled she needs everything done for her. H... was in tears telling me about all this. "What's going to happen when I die?" she asked me, "Who is going to take over?" 

We both know that some nameless person who has possibly never met her daughter will take over because they have no other family. The level of care her daughter gets will not be the same. Those responsible will reduce the level of care she gets and use the funds on someone able to make more noise.  It may well be someone who does not need that level of help. Middle Cat knows one family well. Their disabled child has had singing lessons through the NDIS. These lessons are not in any way an essential part of her care. They just thought the lessons would be "nice" for their daughter.

When the issue was again raised in the media yesterday a mother I know was emailing me back and forth making sure she had done the right thing. Her son will start school soon, in the mid-year intake. He has a speech defect because of a malformation and his parents did get some help. Now they are saying, "We don't need it any more. He's talking well now. If we keep up what was suggested he should be fine." Their attitude is commendable and in this instance I believe they are right. The funds can go to help someone else. My concern would be that the funds go to someone who actually needs the help. Despite that other people are saying to things like, "Keep it. He likes going to those classes. You don't have to pay for the help."

I know how very expensive having a child with a disability can be. All too often other children in the family will miss out on things because the other child needs something. Money can be very short and of course it is the sort of thing that adds to the stress the relationship is already under. A ramp into the house for a wheelchair user will help far more than singing lessons for a child who just happens to like music. The NDIS should be about ramps before it is about singing lessons.

The little boy with the speech defect "read" a story to me recently. He can actually recognise a good many words. He is ready for school and loves to look at books. I have seen him rush off to the junior area of the library and come up clutching the books he wants to borrow. His mother is right. He will be just fine but they have all had to work at it. "You shouldn't get anything for nothing," his mother told me again yesterday. 

Perhaps that's the problem. It's time to review the way the NDIS is (not) working.