Monday, 26 November 2012

For all the wrong reasons friends of mine have appeared

in the state newspaper this morning.
They are lovely people who just happen to have a profoundly physically and intellectually disabled daughter. Their life for the last thirty-five years has revolved around her care. The father is now 82 and the mother 73 and they still have K living at home. There is nowhere else for her to go.
Giving K a bath is a major undertaking but K is always immaculate. Because of the difficulties of dressing K her mother makes many of her clothes and they are lovely. They go on regular outings in the vehicle her father has had adapted for her wheelchair or on the train. K likes being out and watching things.
It is hard to know how much she is taking in because she does not speak. When I am talking to her I have to frame my questions so she can answer "yes" or "no" by looking up or down but, as her mother says, she has a "wicked sense of humour".
And this morning they are in the paper - for all the age old reasons. There is nowhere for K to go and they are worried about her future when they can no longer care for her.
Her father had a knee replacement recently. They were found "emergency respite accommodation" for a short period because it was absolutely impossible for him to do the things he normally does to help. He talked to me about how they might manage when he was considered "fit" again. He also mentioned that, while K was in respite, they were "having a couple of days out" doing things together that they cannot do when K is with them. They were, for most people, the most ordinary activities in the world. He spoke of them as if they were a gift.
Next to the column talking about their worries - and the worries shared by many like them - was another article about the proposed introduction of a National Disability Insurance Scheme. The NDIS proposal has rare bi-partisan support.  A lot of people are hoping for a lot from this scheme if it gets passed into law. They are almost bound to be disappointed.
The real cost of any NDIS would be so high that no government could afford it. That is not to say that it should not be considered. It should be. It will not however hold all the answers. If we are not careful it will end up offering less support than people are given now. The argument will be "you have the NDIS and nothing else needs to be done".  It will not solve the problems of the families who care for children like K even if it gives them a little extra equipment to do the caring themselves.
It will not solve the problem of what will happen to K when her parents can no longer care for her. No government scheme, not even a private and well funded scheme, could provide what K's parents have always provided - outstandingly good care given with love.
But even that is not an issue because there is simply no provision made for the K's of this world - or their parents.

1 comment:

Anonymous said...

Shaping up to be one awful mess at present Cat - the legislation needs a lot of work. Trust you will put in a submission? Chris