A holiday on the National Disability

Insurance Scheme?

I might not have taken too much notice of the article in this morning's paper because I am well aware that the NDIS is not working the way it was intended to work. "Rorts" as they are called here are rife.

But this morning I am running late because a distraught mother phoned me and asked if I had seen the article. "How in the bloody hell do people get to go on holiday when we can't get any help at all?"

It's a fair question. This family has a severely autistic non-verbal son. To say his behaviour is "challenging" would be a gross understatement. He can't be left. No school will have him. His mother cares for him during the week. At weekends her husband tries to give her some time off but D...'s behaviour makes this difficult. They tried to get some "respite" once but they were called back even before they had reached their intended destination because D.... behaved so violently. 

Since then, despite all their efforts, help has not been forthcoming. We are in the process of trying yet again. There is plenty of agreement that they should be eligible for some help but the nature and amount of that help is something else. 

"What I'd like is just a few hours a week. A trip to the supermarket would be a real treat. I don't want other people to do the shopping. I want to do it myself. I want to sit there for half an hour and have a coffee someone else has made. I want to go to the hairdresser instead of J....(Her husband) trying to do it for me. The last time I went out was to the dentist and J.... had to take time off so I could go."

D.... is too big and too violent for me to even contemplate offering to help. There is nobody they can ask. People have just deserted them. I can understand that. D... is not nice to be around. He is constantly making noises and moving in agitated ways. The smallest irritation can cause a major melt-down. He throws things. Getting him to take medication which might calm him is very, very difficult and not that effective - and there is a problem getting a doctor to come to the house. Several weeks ago the police were called by a neighbour because D... had escaped into the front yard - stark naked and screaming. 

Yes, the family needs some help. This is what the NDIS should be for but the article was about how some families are going on holiday using NDIS funds. That's nice. It's good they get to go on holiday because everyone needs time out occasionally. The problem is that what the NDIS is being charged for this often far exceeds the actual cost. When the providers are charging another several thousand dollars over and above the actual cost that is wrong. Those several thousand extra dollars need to go elsewhere. The money should go towards helping D....'s family and others with needs as great as this.

The system has to change but it will be difficult. Those who have been getting help they could manage without and things like luxury holidays are not going to want to give them up. Who can blame them?  

In the end it might cost us more. D...'s mother was in tears again. Both parents are on anti-depressants. I just wonder that they are still together and care for each other as much as they apparently do. D... needs specialist full time care elsewhere - but there isn't anywhere. There isn't anywhere while others go on holiday.