Monday, 31 October 2011
Royal Life Saving Society of Australia
Working towards the introduction of Labor's National Disability Insurance Scheme is one of the most important things that I will do as a member of parliament. In the short time available to me tonight I want to share the stories of two residents in my electorate who have experienced disability at different stages of their lives. Both are men with fierce intellects and a fierce desire for independence. Both have a powerful determination to look after their families in whatever way they can. But their words speak with far more eloquence than mine can, so allow me to share them.
Adam Cope is 38 and has lived with disability all his life. His parents, Les and Peta, are strong people, compassionate and devoted to their family. Here is what Adam says:
With an NDIS I could be far more independent and secure. What the name implies is insurance, but the 'I' means much more than that. For me the 'I' means independence, integration and involvement.
Living each day is full of stress for my parents and myself. Not knowing if tomorrow my mum and dad would still be here to continue to support me is the worst feeling. The fact that this will at sometime occur is really driving me fearful with worry and anger.
The current system provides minimum support and relies on parents, family and charity models to enable me to have a life. The NDIS would give me a means to have hope and be supported to do what I want to do. It would also let mum and dad off the hook and they could then have a life. After 38 years I think they deserve it.
Adam goes on to say that the areas he needs support with include 'communication, dressing, toileting and all aspects of daily living'. He says:
I cannot go anywhere without someone to assist me. My interests include writing and creating art. At the moment mum and dad support me to do this and their skills in these areas need to be transferred to others before they leave this world. The NDIS would enable my personal plan, to live with support in my own place, to become reality. Paying for support people and assisting me to live where I want to and with whom I want to.
For years people with disabilities have been placed into the too hard basket. Locked out of life's joys and treated as oddities by society and government. For too long we had to take it and just be happy that we get anything at all. Society now has a chance to make amends and get behind the NDIS.
Nick Wurf lives in a suburb of my electorate called The Basin. Nick is 42 and has worked since he was 16. He is married with two daughters and has a granddaughter on the way. He has been diagnosed with bipolar disorder. That occurred around 10 years ago. He has suffered its effects all his adult life, and he now faces multiple sclerosis. Nick says:
This resulted in a need to stop work some 12 months ago and the introduction of a wheelchair and many other aids to my life.
My query to anyone who will listen is why is my wife's life being stripped of the things we have strived for over the last 10 years? This is a woman who gets up at 6 am to get my day started, works 8 to 9 hours a day in an office. She then comes home to take over from my daughters in caring for me and complete the normal chores that most partners would usually share.
She pours her below average wage into my medications, incontinence aids and specialized equipment to make my life easier. She pays our mortgage and household expenses. Add my $254 a month pension and there is little if anything left for basics, let alone for her, the one doing all the work.
When I'm gone and all our resources have been depleted, where does she find herself? Without our home, most likely, perhaps after some years on a carers pension having had to give up her job to care for me? No assets to assist her in that time of grief.
… … …
I accept my lot in life, I don't however accept the inequities that are being forced on my wife and children. The only thing they did wrong was support me, care for me and love me. I haven't just lost the lotto game of health, my family have had to pay for the ticket.
Nick, needless to say, is a very keen supporter of the NDIS and has made that very clear to me on the occasions when I have spoken to him. As a member of this place I am committed to ensuring that those who are affected by disability can achieve all that they can aspire to and that they and their carers are supported to enable this.
These are just two stories. When it comes to the NDIS there are tens or perhaps hundreds of thousands of stories precisely like these. For me the NDIS is about much more than support; it is about giving independence to the articulate, passionate and determined men, women and children who face disability each day together with their carers, their families and their friends. I commend Nick and Adam particularly for providing me and this House with their words this evening.