has been made.
As I expected the first thing which happened was an alarmed call to me. "What's this going to mean for K...'s package?"
My answer to that was, "Nobody is going to take K...'s package away. It might be reviewed at some point but even without the NDIS you would have been getting extra help."
The NDIS was designed to provide help for people like K... She is so severely physically disabled she cannot do anything for herself. She cannot speak. She is fed through a tube because she cannot swallow. She has the intellectual understanding of, at most, a two year old child. Her parents did an amazing job of caring for her. Her father is no longer alive but her mother, now in her eighties, goes to see her daughter in the "group house" every day. She worries about what will happen to K... when she is no longer there to help.
"I would miss her dreadfully but I wish she would go before me so I would know she was safe," her mother tells me. What a think to have to wish!
The NDIS was supposed to be for people like K. It was not intended to provide football boots and a carer to take a boy with behavioural issues to after school sport. Yes, they are behavioural issues. He is not "autistic". He has some learning issues but they are not severe. He has extra tutorial sessions. They require extra effort on his part, an effort he is not making. He is the only child and life revolves around what he demands. He is a bully at school and has been suspended for his behaviour more than once. He has been "assessed" more than once and each time his "package" has been increased. His mother told me, quite proudly, that he is now getting more than $30,000 a year in funding. He loves the extra attention but is it doing any good? That is highly debatable. It is not what the NDIS was intended to cover.
The NDIS is doing the job it was intended to do for another child I know. She is now five and this year is being "home-schooled". It is not by choice but because she is physically too frail to go to school. She is a very intelligent child who wants to go to school. Her package includes funding for attending a "gym class" - actually a highly specialised exercise session. The sessions are designed to try and build up enough strength to handle at least a half day at school next year. If she can handle that then she will attend school full time the following year but there will still need to be someone available to give her some help to handle her medical needs. Her father told me, "We are hoping we can cut back on the funding as she learns to handle more herself. "
I had her here for a couple of ours recently when her grandmother could not help as she usually does. We did some craft together and at one point I asked, "Do you want me to do it or would you like to try doing it yourself?" Her immediate response was, "I want to do it." It has taken time and training and an expectation that she will try to do what she can to get to that response. It made me think that the NDIS needs to be about more than funding. It needs to be about an expectation of effort as well. Yes, it is "not fair" this child will have a life long physical issue but her parents are teaching her that this means she will always have to make the effort to cope.
Perhaps this is where we have gone wrong with the NDIS. It should not be about "services" or "money" but about assistance only where assistance is really needed. For the K..s of this world it should be about dignity and the occasional treat because she can do nothing for herself. For the other two it should be about making them as independent as possible but making sure they are putting the effort in so funding is doing the job it was intended to do.