The NDIS is not working

as it was intended to work. The cost has blown out far beyond what was intended or is needed. 

Saying that will not be popular with everyone. It will certainly not be popular with many recipients.  Add in the "out in the community" and "like everyone else" arguments and "disability" is costing the community far more than it should.

The worst part about all of this is the very real problem that there are still some people who genuinely need help who are not getting it. They are simply unable to access help they need in order to live with dignity and even, in some cases, to live safely.

There is still a belief that all people with disabilities should live "out in the community like everyone else" and that they should do this in much the same way as everyone else. We have also discovered that, however well intentioned, this does not always work as well as it should.

H... stopped me in the shopping centre yesterday. H...is in her late 80's.  Her daughter, K..., is in a "group house. K... is profoundly physically and intellectually disabled. K... can do nothing for herself.  She cannot speak. If she recognises you and appears to feel comfortable with you she will smile. There are things she can indicate "yes" and "no" to by her expression but that is the limit of her ability to communicate. Her intellectual ability is perhaps that of a two year old, if that. K... knows me and I always try to include her in the conversation if she happens to be there. It is less often now her mother cannot manage to get her in and out of an adapted vehicle alone. 

H... has been a wonderful mother. She has dealt with all the NDIS paperwork (of which there is a vast amount for someone like K... ) and she visits her daughter everyday. She will help with K...'s feeding which now takes place through a PEG tube because K... cannot swallow safely. There are times when K... would not get fed without her there because not all the "carers" are trained to deal with this. H...will sometimes be called back in to help.  

H... worries about all this though. What will happen to K...when I die?  How will K... survive? Will people care? How will she dressed and fed? 

I have no doubt at all that K... is well cared for now because H... is there and watching. I know H... feels the same way, indeed is very aware of it. She still has to fight for everything K... is getting. The funding "runs out" from time to time and H... tries to supplement it from her own limited funds. She pays for K...'s clothing - something that needs to be replaced frequently because K...dribbles constantly - indeed makes most of it so it is easy to dress K...

As we were talking we were watching a child having a melt down because his grandfather would not allow him to have an ice-cream at the local "Wendy's" place.  I know this child too. He is "on the spectrum". His parents have negotiated quite a large NDIS package for him. His mother told me about it and how much they have been able to get. NDIS is paying for things that would normally come out of the family budget. He is the only child and she has "given up work to care for him". Yes, he has some problems but his grandparents tell me he is "spoilt" and "usually gets what he wants". He is very articulate but is very disruptive in school and at home. He is one of the children whose NDIS package will be affected by the upcoming changes.

His grandfather told me, "And a good thing too. They don't need all this. They need lessons in how to handle him...if it isn't too late."

They do. His mother arrived and wanted to get him the ice-cream to keep him quiet. I don't know what happened because H... and I moved on. I did think about it all though. K... needs all the help she can get and yet H...has to constantly justify it all. It's exhausting even though it was what the NDIS was intended for. The other child does not need his "Little Athletics"  and "soccer" fees paid for by NDIS funds - but they are.  

 We need to rethink the NDIS and who it is intended to help and why. We can say everyone is equally important but do they have equal needs?