Sunday 11 February 2018

The National Disability Insurance Scheme is

not working. 
It was never going to work. It was designed not to work. 
The previous government set it up with a great deal of fanfare. It was going to be the answer to so many problems. People would be able to get the funding they needed and spend it on the things they needed. Or were they?
The first hint that there were going to be problems came long before anything was decided. There were things that were going to be "excluded".  The roll out would be "gradual". Some age groups would not... it went on.
There is an elderly couple living not far from me who have a profoundly disabled daughter. She is unable to do anything for herself and is severely intellectually impaired as well. 
Her father is 87, almost 88. Her mother is a little younger, but not much. They have been caring for K.... all her life. What is more they have cared for her extremely well. She is always attractively dressed and beautifully groomed. They take her out, often taking her over to the shopping centre so she can just watch what is going on. K... is mostly a happy person. She will smile if you talk to her. I can ask simple questions and get "yes" and "no" responses from her eye movements. 
Her parents are waiting for a place for K... in one of the "group houses" in the community. It isn't what they want for K... but they have reached the point where caring for her is beyond their physical capabilities. At present people come in to help morning and evening but that has only occurred over the past few years...after her father had surgery. Middle Cat, a physiotherapist, treated him for repetitive strain injuries caused by helping K... 
K...is now fed through a "peg" but that was done only recently - in preparation for her going into the group house. Before that feeding her was a long and slow process.  There was always the danger of her choking.
Getting "respite" help was difficult...and not always successful. Her parents would try going right away so that K... would not be sent home because caring for her is so demanding. 
One attempt to put K...into a group house did not work. Another resident was violent and K...is completely unable to defend herself. They chose to keep the violent resident rather than K.... They then offered her a "flat" - a room with a bathroom. Someone would come in twice a day. The rest of the time she would be on her own. It was so obviously unsuitable that the offer was not really an offer at all but it allowed the authorities to say it had been made.
There is a new house being built. It has been delayed almost two years now. It might be another six months before it is ready. 
And now there is another problem. K's father told me this yesterday. 
When K... moves in there the "access cab" will no longer be available at the current rate. K... will have to pay full price for any trip.
Why? "There's a bus outside the door. She can catch that."
What they mean of course is that a carer would have to manouvre K...'s specially designed wheelchair onto an "accessible" bus and then off again. That would be not only difficult but dangerous. It is most unlikely the bus will go where they need to go so it would almost certainly need to be done more than once. It would be a major undertaking and no carer would contemplate doing it. What it means is that K... won't go anywhere apart from essential medical appointments - for which she will pay an excessive amount in transport fees. Oh there might be a "walk" to the local shops - if someone is prepared to push her.
K...'s pleasure in life is watching the people around her. It's going out and watching people in the local shopping centre or going to the local park and watching the birds or watching children play there. She's not intrusive. Most people don't notice her. Those who do rarely speak to her. They speak to her parents as if she isn't there.
It is difficult to know how much she understands but she does understands more than most people realise. 
I know she will understand if she gets left behind. I know she will soon associate going in an access cab with some unpleasant medical appointment.  I also know that, in financial terms, she has been considered to always have been a "drain" on society. Some would say she has never "contributed" anything.
Well, I'm sorry but that's not good enough. K... is a person. For all her limitations she has a sense of humour.  She has made her parents laugh. She has made me laugh and made other people laugh.
That is a real contribution to society and it needs to be appreciated as such.
It won't be. The NDIS money is being spent on other things. K... is going to get even less now.
 

2 comments:

Anonymous said...

Labor designed it to save money. Okay, that sounds harsh but it is the reality. They knew it would never work. When they talk about all the billions and the cost blow out they don't tell you about the services they have cut and are going to cut and the families who have been told that they are on their own and not eligible. They don't tell you about parents working two jobs just so that you can get your kid the most basic things they need and how your other kids miss out. They don't tell you how you end up looking after your brother "just for now" because your father dies and your mother is ill and then you are still looking after him four years later having given up work and still being told that there is nowhere for him to go although he is on the waiting list as high priority. I should never have taken him in and that's an even worse thing to have to say. Debs

Anonymous said...

I am sorry to read about NDIS's poor performance. I hope all will improve.

However, a friend, after initial teething troubles, now has a sympathetic and interested worker there who has made things happen, and suggested others, for her son.

I think it is meant to be an ambitious scheme, and that is a good thing. BUT the money and commitment must be there also.

LMcC