News | 30 March 2016

An NDIS in my lifetime

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Dr Brock lived with Motor Neurone Disease (MND) for 20 years, continuing to work for the NSW Education Department and Sydney University while almost totally paralysed.

His courage in battling MND made him a national figure, advocating for research into its causes and cures.

He was a leader in education, being voted one of the Sydney Morning Herald’s five most important people in NSW education in 2009

He was also a passionate campaigner for the NDIS, arguing it will transform the lives not only of people with disability, but their families and their carers – and make Australia a better place.

Dr Brock said the NDIS was particularly important for people who are born with a condition or acquire it, who unlike people who are left with a disability after an accident, can sue to ensure they can afford the supports they need.

“The beauty and the magic of the NDIS is that that distinction evaporates,” he said in support for the for the Every Australian Counts campaign.

Dr Brock was given 5 years to live when his MND was diagnosed in 1996. He survived for 20.

In that time he continued working, found solutions, and relied on the support of aides and personal staff – acknowledging that without them his life in the community would not be possible.
He saw a world where the NDIS opened those doors to others with disability, whatever their goals.

He told the National Press Club in December 2011 the NDIS would provide a boost national morale, appealing to the Australian spirit of a fair go.

And he was optimistic it would happen in his lifetime, with the continued work of Every Australian Counts supporters, the generosity of spirit of the Australian community and political leadership.

“This is a movement that’s grassroots. It’s come from marvellous advocacy by people representing people with disability and people with disability themselves.

“We have to ensure that yes it counts, that it doesn’t all trickle into yesterday.”

Friend and former NSW Education Minister Rodney Cavalier said

“His final twenty years were years of misery yet Paul was never miserable. His life was restricted but he travelled and worked on projects important to him. Everything stood in the way of creative expression, Paul continued to write poems and enjoy the music his family created. He stayed on top of current affairs, read widely, asked questions.

After so many successes and so much promising, Paul’s future was stolen from him. Paul stole his future right back.

Paul is now released from earthly handicaps. He deserves the rest that is his.”

Dr Paul Brock’s goal of an NDIS in his lifetime was realised. It is because of legacies like his that we continue to campaign for the NDIS to be truly national and fully funded, so the future of all Australians with disability is theirs.

Transcript

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0:13 Motor Neuron Disease is a neurological disease.
0:17 As yet there is no cure for it, and it’s inevitably fatal.
0:22 I was diagnosed towards the end of 1996, given three to five years to live.
0:28 I’ve got a bit of movement in one finger, I can move my knees a wee bit,
0:33 can move my head obviously, clearly can move my mouth,
0:38 but apart from that I’m totally paralysed.
0:43 In classic MND if you don’t die of a heart attack or pneumonia or whatever before that,
0:49 you end up in a completely paralysed body, except you can blink your eyes.
0:56 The cruelty of it or a particular cruelty of it, apart from that, your mind remains absolutely clear,
1:03 your brain absolutely clear, so you’re actually sort of living inside a paralysed body,
1:08 which frightens the bejeezus out of me.
1:15 Let me put in a nutshell why the National Disability Insurance Scheme is fantastic.
1:20 Up until now, people who’ve had accidents or suffered injury or paralysis or whatever
1:27 due to the fault of others or organisations have quite rightly and absolutely properly
1:34 been able to sue for compensation to get financial resources to help them with the rest of their life.
1:40 That’s great.
1:41 However, people who have acquired perhaps even a similar condition or effective condition of paralysis or whatever,
1:47 caused from birth or a terrible disease like Motor Neuron Disease, or they’ve acquired later in life
1:56 have had no opportunity to get access to resources.
2:01 The beauty, the magic of the national disability insurance scheme is that that distinction evaporates.
2:17 This is a movement that’s grassroots,
2:19 it’s come not just from the productivity commission and so on,
2:22 it’s come from marvellous advocacy work by people representing people with disabilities
2:27 and people with disabilities themselves right across Australia.
2:30 We have to insure that yes, it all counts, that it doesn’t just trickle off into the yesterday.
2:38 The statistics say that there are about three quarters of a million Australians with a disability.
2:46 However, for every one of those people with a disability there are family members,
2:52 wives, children, husbands,
2:56 all sorts of relatives and friends and partners who are affected by that disability in varying degrees of intensity.
3:07 So this reform is very wide ranging in its impact,
3:11 and in some ways you might say it will help shine the light
3:15 on things that perhaps haven’t been exposed very much to public discourse
3:21 and public awareness.
3:30 I’ll say this; in two days time my wife and I celebrate our 22nd wedding anniversary,
3:35 we got married on her birthday.
3:37 And of course when we were married there was absolutely no hint of anything like this smashing us.
3:43 The hardest part is that loss of personal-
3:47 I mean I can’t put my arms around my wife, I can’t reach out and touch her;
3:54 that’s the hardest part.
3:59 It’s the personal- I can handle this.
4:02 It’s the personal and psychological effect of seeing what it does to your wife and your kids,
4:12 and knowing that there’s no light at the end of the tunnel, that’s the hardest part.
4:23 I call it a mongrel disease.
4:25 I couldn’t have survived as long as I have without the support of my family.
4:31 And you do encounter good people like Maria, my personal assistant, my personal carers.
4:38 Now without the support of the personal carers, from home care and other agencies that they subcontract,
4:47 and the support of my personal assistant, who is a member of the department,
4:54 I couldn’t do what I do.
4:57 One of the really important effects of this scheme when it comes into operation
5:02 will be that it will get more people with disability out in the community
5:06 and it’d be a great benefit to both, to people with disabilities
5:10 and to the wider community of people who don’t have disabilities.
5:14 I am supporting this campaign wholeheartedly enthusiastically,
5:19 and I’d love to see it come in in my lifetime.
5:23 Now I’m realistic enough to know that the nature of this rotten disease that I’ve got means that
5:31 with the chances of probability it is quite possible I wont live to see that.
5:37 But I’m fighting and campaigning as much for all those who are now with disability, and their families,
5:44 and in the future, who will be there after people like myself have gone.
5:50 So I’ve got a lot of optimism that that generosity of spirit when Aussies are confronted with a crisis,
5:58 or confronted with people in real need that they may not have been aware of before,
6:02 I’m very confident that they will come behind this and support it and be counted in.

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