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Live.

At the National Press Club today, the National Disability Insurance Scheme Forum. With three speakers, Peter Darch

West Australian Young Person of

the Year for 2011, Dr Rhonda

Galbally the nominee for the

scheme's advisory group and Dr Paul Brock from the NSW Department of Education on the

theme "Every Australian Counts", from the National Press Club in Canberra.

Press Club in Canberra. (Bell rings) Ladies and gentlemen,

welcome to the National Press

Club for today's National Press

Club address. In its landmark report earlier this year, the

Productivity Commission

described the current

disability support system, in what may be considered a gross

understatement in Australia, is

very poor. It called for big

changes saying the current system was inefficient, unfair, simply did

not work well. To quote from

the report, one of the more

disturbing observations I read

from one of the many people who

gave evidence, in this case an

experienced psychiatrist. He

said is "The regulator with

which I meet parents with

murder and suicidal thoughts as

they've been unable to find

help for their disabled child

is both alarming, but also a

marker of the failure of

coordination of any service. "

I also note that murder-suicide

in these families is

more recognised event. It was

in anyone's language a damning

indictment of the system. In

response, the Federal, State

and Territory Governments have and Territory Governments have agreed agreed to fast-track the

commission's recommendations to introduce the National Disability Insurance Scheme. That's a positive step in the

right direction, but to discuss

what is involved in that and

whether it's a step far enough

I'd like to welcome Dr Rhonda

Galbally, who's to my left. She's well-known for her

life-long efforts to the lot, to make Australia a

more just and equitable

country. She's established the

Commission for the Future, the National Preventative Health

Agency, chair of the Royal

Women's Hospital, chair of the

National People's Chair

Advisory Council and a member

of the Committee for the

establishment of the National

Disability Insurance Scheme. To

To Rhonda's left Peter Darch is

the 2011 West Australian Young

Person of the Year. He became

a quadriplegic in a swimming

accident as a teen.

works as a counsellor and youth

development officer with the

Mandurah City Council. He's

become a passionate and respected advocate for others

in the community less able to speak out for themselves. And

to my right, Dr Paul Brock.

Paul is director of learning and development research with the Department of Education and

communities in NSW. Also an

Adjunct Professor in the

faculty of education and social work at the University of

Sydney, to mention a few of his

numerous roles. Paul was

diagnosed with motor neurone

disease in 1996 and he is patron of the Motor Neurone

Association in NSW. To share

views and thoughts on the proposed National Disability

Insurance Scheme, please

welcome our three speakers.

Rhonda Galbally, if I could

pass to you, to perhaps get

things rolling, to share your

thoughts with us. I would like

to acknowledge the traditional

owners on the land on which we

meet and pay my respect to elders

elders past and present. Two years years ago, I came to the

National Press Club to deliver

a state of union for people

with a disability in their

families in this nation. Two

years ago, I told of another world that few people knew

existed, a world where Australians were forgotten,

abandoned, ignored. Let me

remind you of this world. In

this world you're entitled to

two showers a week. The rest of the time you're forced to

lie in your own urine until

you again. You give up work,

going out, you are too ashamed

to see your friends. You are

isolated and alone. In this

world if you're a child who

needs a wheelchair, you will

find the cost is not covered.

Your parents hold cake stalls

and raffles, they ask the local

Rotary for help, but by the

time the chair arrives, you've

already grown out of it. In

this world, if you have

with autism or any other disability, you face a bewildering maize of fragmented

services. You go to one

funding body after another.

You have so many appointments

and assessments, you spend so

much time filling out forms on

top, of course, of trying to

care for your child alone that

you're exhausted. You give up

trying to work. Australians with a disability in

families are currently held to

ransom. Having to accept

anything that is offered, even

if it is the wrong equipment or the wrong support that isn't at

the right time of day and not

doing the things that need to

be done. They are beggars and

beggars have to accept anything

that's dished out. This is the

world that people with a

disability and their families

endure all day every day right

now in Australia. In fact, the last great leap forward for people with

people with a disability was 30

years ago when we fought so

hard to close the institutions that gave people life

sentences, shutting them away

from society from birth to

death. We mostly won that battle for

deinstitutionalisation, but we

lost the fight for social and

economic inclusion. So what

has changed in the two

since I was here last? What has

changed is hope. Where there

was once despair, there is now

hope, and this is because a hope, and this is because a new

era has begun, an era that for

the first time ever has all

parts of the disability world

working together for a common

vision.

Noordin Muhammad Top It is a powerful quooish This engine room is called the national disability and

carers alliance and I would

like to acknowledge the members

of the alliance from Carers

Australia, the Australian Federation of Disability

Organisations and National

Disability Services, and from

this alliance has come the

"Every Australian Counts"

campaign. Since January this

year, the campaign has amassed

almost 100,000 supporters from

every part of the country every part of the country and

from all walks of life. It's a

powerful grassroots movement of

people who put up their hand to

say enough is enough and demand

a fair go for people with a disability and their families,

and Australia is the only

country in the world to build

an alliance of all those affected

affected by disability. All

united, all determined to wake

Australia up and to ask for

major reform. And

first time, we are all

optimistic. We're optimistic

because after an exhaustive

18-month inquiry, the Productivity Commission Productivity Commission has

handed down their final report

in just August this year and by

the way, this is the hard-nosed

Productivity Commission who

aren't known for their bleeding

hearts. And they recommended introducing a National Disability Insurance Scheme for all Australians. Just 10 days

after receiving the landmark

report, the Federal Government

announced that it would

insurance the National Disability Insurance Scheme and

all ministers from around the country met at the Council of

Australian Governments and all

agreed to work together to

implement the National Disability Insurance Scheme.

Given the history of

disagreements between Federal and State indeed an extraordinary

commitment, and since that commitment, and since that time the States and Territories have

agreed to work with the Federal

Government to speed up the full nationwide implementation, to

reduce the roll-out time from 7

years as recommended by the

Productivity Commission to 6

years. To the people around

the country who are in

desperate need of support, this

speeding up of the roll-out is

very welcome indeed. This the quickest turnaround

response of any government to a

report of this nature. All

governments in Australia have now now decided together that we

need to transform how we treat

people with a disability and

their families. And not only all governments, but all

parties. In this often

fractious political

environment, the National

Disability Insurance Scheme has

received strong bipartisan

support. Why this

unprecedented level of support from all political parties and

the rare State the rare State and Federal

cooperation? Because they all

know that the system is broken

and must be fixed. They know

that people with disabilities

and their families will not

give up. They know that it is

just plain wrong to allow this

area of gross neglect to

continue and they also that a National Disability

Insurance Scheme will add

significantly to the productivityivity of Australia.

The potential of the scheme is

enormous, but it is at heart a

simple idea. Number one,

create a consistent and secure

national pool of funds and from

these funds draw down the

necessary support for people

with a disability and their families. Number two, allow

people with a disability and

their families control to

choose the services and

supports that supports that best suit them and their needs. Allow them

the dignity that comes from

control and choice. Three,

create a system that is not

only effective and efficient,

but is flexible and responsive

to individual needs. Four,

build a system with the

incentive to get people what

they need when

that they can maximise their

opportunities to participate

fully in every aspect of

Australian society. For

example, home modifications and

personal support and domestic

help will be available straight

away. This will mean that

people will no longer be left

to languish in hospital or sent

to nursing homes or abandoned

in respite care beds because

their families can no longer

equipment will be supplied as

soon as they are needed.

People with a disability will

then be able to get an

education, return to work or

get a job or keep a job. Early

intervention will be just that

- early and enough for every

child with a disability who can

benefit from it. Then, all

young children with a

disability will be able to

reach their potential and have

every opportunity to

participate in a full education

so necessary for their future. Young people with disabilities

will be like all other young

people, able to make decisions

about who they live with, where

they live, how they live. They

will be able to leave home and

move to as independent an adult

life as is possible, and so the

fears of aged parents who are

haunted by what will happen to

their older adult child will

finally be put to rest. The National Disability Insurance

Scheme will allow families to

return to being families. Mums and dads, brothers and sisters, partners, husbands and wives

who will, of course, still

care, but the caring role will

no longer dominate their lives.

It will mean that mothers and

fathers will no longer find

their relationships fractured

by the stress. People with disability will never again be

seen as burdens on families. I

know what a hurtful and

divisive issue this has been.

People with a disability hate that characterisation as

burdens. It strikes at the

very core of our being and yet

the reality is that this is the

experience of carers when they

are left to do everything, with

no help and no hope. Without

support, the relentlessness is

hard to bear, but the peace of mind which will come from the National Disability Insurance

Scheme is not just for those who already have a disability.

Like Medicare, it is for every Australian. Every Australian

will be able to rest easy

knowing that they are certain

of reasonable care and support

for them or their family member

who may become disabled. This

is important, because

disability can occur at any

stage of life from many causes,

from birth, from sport, from

cars, from falling off a ladder, from stroke,

Parkinson's, MS and many other

illnesses. This transformation

of the landscape course, come with a price tag. The Productivity Commission

estimates that the system is underfunded by approximately

half. That means an additional

$6.5 billion by the final

roll-out year of 2017. This is for an effective and sustainable system

social and economic needs of

the nation. The National Disability Insurance Scheme is an investment in the potential

of people with of people with a disability by providing them with targeted

and timely supports many will

be enabled to enter the

workforce and so help meet the

significant productivity

challenges which face

Australia. And by providing

people with appropriate support, the National Disability Insurance will also allow families to

participate fully in the

economy and the community.

Many new jobs will be created,

new aids and equipment will be manufactured, new services will

be developed. So it is for all

of these reasons that the Productivity Commission concluded that concluded that the economic

benefits of the National Disability Insurance Scheme far

exceeds the costs. But in the

end, this may not be the greatest benefit. The National Disability Insurance Scheme

will mean that people with a

disability will become fully citizens in Australia rather

than objects of charity. They

will be able to participate in the community becoming neighbours, colleagues and

friends. In the process, they will become people seen as

worthy of investment, as

Australians with potential, as

valuable contributing citizens of this country. The National Disability Insurance Scheme means that Australians with

disabilities and their families

will move from begging to dignity. They will move from

charity to human rights. Australia will

Australia will leapfrog from

being one of the worst OECD

performers on disability into a

leadership position. The

National Disability Insurance

Scheme is this generation's greatest greatest reform, benefiting

every Australian. Every

Australian is a stakeholder in the development of the National Disability Insurance Disability Insurance Scheme. Thank you. APPLAUSE

Thank you very much. I'll now

pass to Dr Paul Brock. I too

would like to acknowledge the traditional owners of

on which we're meeting and to

pay my respect to their elders

past and present. I've been

asked today to speak about my own personal story of disability in the disability in the context of

the need for the NDIS. In late

1996, my entire world was turned upsidedown. Walking

into a doctor's office feeling

as fit as a fiddle with just a

slightly weak forearm, I

emerged with a death sentence

hanging like a noose around my

neck. "You have motor neurone disease and you can expect to

live for only between 3-5

years" , are the two sentences burning in my memory. I was

shocked and terrified. I had

only the vague est notion of

what this motor neurone disease

was. I soon learned it was an

incurable inevitably fatal

disease rarely mentioned in the

media. It progressively

paralyses arms, legs, and

swallowing muscles and if you live that

a mind and consciousness inside

a body capable of eye blinking

before breathing muscles

completely give way and you

die. Incidentally, die. Incidentally, while contemporary emphasis on

prevention is important, for

example, the targeting of

childhood obesity and cigarette

smoking is necessary anded a

Michelle, it must never be

forgotten that degenerative diseases are not currently

preventable. They just hit us

like cyclones, except that cyclones can usually be fairly

accurately forecast. Let me

put in a nutshell why I believe the National Disability

Insurance Scheme is so

crucially important in providing the

and sense of security that

would bring as early as

possible to those who need it.

Until now, if somebody acquired serious disability through, for

example, misadventure caused by

a libel party, he or she had

the capacity to seek financial

redress through a variety of legislated which, of course, is exactly as

it should be. But if the disability had either been

acquired at birth or

subsequently in life through some horrific out of the blue

shocking disease or other

medical rendition or accident

for which no compensation was

received, there has been no

access to the kind of financial support that would be provided

by an NDIS. Since my

diagnosis, the financial burden

upon me and my family has been immense, as

deteriorated as I've tried to

live as normal a life as

possible. However, had the National Disability Insurance

Scheme been in place at the time of my diagnosis, it would

have made a world of difference

to our family's financial

situation and other situations.

Our expenses have risen from

year to year over the last 15

years and they are set to

increase in the future.

was first identified by the a

great French neurologist in

1869 so I believe it's a

scientific research disgrace

that in that in 2011 nobody understands

the cause and nobody has yet

discovered a cure for motor

neurone disease. The majority

of us die within 2-3 years of

diagnosis. Of course, there

are exceptions. For example,

the Australian painter Pro Hart

died only 5 months after

diagnosis. I

the case. Professor Stephen hawking is at the other end of

the spectrum. In my case, 15

years after diagnosis, I can

move my head, the top knuckle

on the index finger of my right

hand, waggle my knees smally

and can still speak, but

otherwise I'm now almost

completely paralysed. I

virtually live in this

wheelchair. MND never takes a

holiday as it melts away my

muscles. There are about 1400 Australians living

Approximately 600 of us will be

dead this time next year. For

every death, at least one more

person is newly diagnosed. It

is a little-known fact that MND

kills more Australians every

year than does AIDS. Those

still living with MND are also

the wives, husbands, the

partners, the daughters, sons

and parents who on a daily

basis provide us with care and try to long-term drawnout grieving of

watching the life of their

loved one slowly being

destroyed. Our friends and

colleagues also share this

grief. grief. I've already referred

to MND's financial impact, but

even more are the challenges to

my image and myself as a human

being have not been trivial.

The physical impact of having an incurable and terminal

disease, but the emotional and psychology

and our young daughters are

profound. I am frightened by

the probability that lies in

front of me and my family. We

face the real possibility face the real possibility of eventually my being unable to

speak and swallow, to be fed by

a tube into my stomach, to

breathe permanently dependent

on a res spirator while having

a fully alert mind inside a

body capable only of blinking

my eyelashes. In 2003, the privilege of meeting the inspirational Christopher Reeve

and his wife Dana, both now

sadly passed away. Christopher told me he would take

researches to hospitals and

clinics in order to meet people like himself and neurodegenerative diseases like

myself. He usually concluded

by looking researchers fairly and squarely in the eye and

saying, " Our houses are already already on fire and we need you

to put them out now. "

Applying Christopher Reeve's

challenge to our context today,

it is so gratifying that the

campaign of support for NDIS is

rocketing along now. Just last

night, for example, at a

function that I wasn't present,

I understand the Prime Minister made it absolutely clear the Government's commitment to the National Disability Insurance

Scheme. This movement has been

both a top town and a bottom both a top town and a bottom up

campaign. The bottom up

movement has been driven by

with disabilities themselves and we've listened to a

champion advocate for such a

scheme, Rhonda Galbally. And

those parents or guardian those parents or guardian s or

sons or daughters or other

family members or friends

providing care for them in one

way or another. Top down, there's been leadership from

the Productivity Commission and

the Commonwealth Government and

the alliance to which Rhonda referred. The agreement of

support for an NDIS in principle the recent COAG

meeting... well, the ministers advised the leaders,

represented represented a very encouraging beginning. The campaign has

been vigorously led by the

campaign director, John Della

Bosca. As far as the Commonwealth

Commonwealth Government's

future implementation of the Productivity Commission's

report is concerned, speaking

both personally and as vice-president of the Motor

NSW, I would like to suggest

that the Government might

exercise flexibility on one

particular matter. Of course, it would not it would not be the first time

that a government has exercised

flexibility in implementing a

report. The Commonwealth

Government has already

exercised flexibility by

indicating that the final year

of national roll-out with all

the current and new clients to

be receiving services will now be brought forward a year to

2018-2019 as stipulate in the Productivity Commission's

report to 2017-2018. I believe by excludeing from the NDIS

anybody who acquires a debilitating disease or

condition when aged 65 or over, the commission may have inadvertently disqualfied that

small number of previously healthy people who will have

the tragic misfortune of being

diagnosed with a rapidly progressing neurological

disease such as MND at age 65 or over.

or over. For example, I'd be confident that the commission

would not have been aware that

of the 259 people moan by motor

neurone disease Victoria to be

living with MND in that state,

126 were diagnosed when aged 65

or over. Therefore, of the

approximately 600 people

diagnosed with MND each year,

we can estimate that almost 300

will be aged 65 or over. While

many of these people will have

their needs met by the aged

care system, many others may

require services

systems to meet the needs

caused by their rapidly accelerating physical

disintegration. Remember, the

majority of those diagnosed

with MND die within only 2-3

years during which in a relatively short time their

physical deterioration is catastrophic. Therefore,

financial demands made by those

people would be for a

relatively short period. So it

would be admirable if would be admirable if the Commonwealth Government's

legislation could consider

providing such a safety net flexibility for people

diagnosed with MND and other

neurological diseases when 65

or over. Like Rhonda I've got

great optimism for the campaign

that it will succeed because of

its intrinsic goodness of

public policy, the power and

efficacy of the top efficacy of the top down, bottom up leadership already displayed, but also because I

believe that our Australian people will throw their support

behind the campaign. Why?

Because the NDIS appeals to

many aspects of what we like to

think of as the Australian

character, not all features, of

course, are unique to

Australians. We like to see

ourselves as cherishing indeed insisting upon a fair go for all. tradition of volunteerism continuously demonstrates, Aussies reach out generously to those who need a hand up. those who need a hand up. An equitable, accessible quality NDIS would at long last provide a fair go for those who've not been able to home to enable them to rejoin the paid workforce in some degree as they choose. Such an insurance scheme would provide a boost to Australians would take pride in

the provision of assistance to those among the more challenged of our community and would also feel more secure themselves about their future and that of their family. But we must avoid any unnecessary delay and as I said before, I was so heartened to hear of the Prime Minister's commitment last night. Of course, there are still questions to be asked and answered. For example, is there a Government commitment yet to a timetable for legislation to be introduced into the legitimate questions, I don't know the answers to them, nor are they meant to be merely rhetorical. Will the Government be prepared to be flexible in its of the Productivity

Commission's report, to permit

the kind of safety net flexibility I mentioned earlier? What financial

commitment will be expected of State and Territory Governments? How much

bipartisan, or should I say in our contemporary political support can we continue to be

confident in the NDIS? I'm not aware

aware of any evidence to the

contrary, but it's a question

that must continuously be asked. In particular, of

course, where do the Coalition parties and the Independents in

the Federal Parliament stand on

this issue? To conclude, many

lives and the basic rights of

many people depend on a properly established,

properly established, equitable, accessible equitable, accessible quality National Disability Insurance

Scheme as soon as possible. To reiterate Christopher Reeve's

vigorous assertion, our houses

are already on fire and we

need, and I feel confident that

we have, we need the political

leadership in this country to

set about putting out those fires now. Thank you.

APPLAUSE

Thank you very much, Dr Brock.

Let me pass to the Young Person of the Year, Peter

Darch. G'day. My life changed when I was 16. At the time I

was living with my four younger

brothers in Mandurah, an hour

south of Perth. I was playing four sports a

four sports a week. I wasn't interested in school and I was

planning on becoming a crayfish

Ehrmann. I saw myself moving

north, skippering a boat,

fishing, having a pretty chilled something that was drama-free.

I hadn't thought of marriage, I

hadn't thought of having a

family and I definitely hadn't thought of disability.

bridge is an icon of my town and

and my brothers and I jumped

off 15,000 times and that's an

understatement, I can tell ya.

On January 3, 2002 I took my

last jump. I landed perfectly

fine, but lost concentration

and I swam into the path of my

friend who jumped on top of my

head from the top of the

bridge. I knew

that I was completely stuffed,

because I was face down

floating with my arms out in

front of me wondering why they

weren't helping me out.

weren't helping me out. I

immediately lost all movement and feeling in my arms and feeling in my arms and legs

and was like a head without a

body. My brother had done

first aid and immediately acted

to keep me still and save me

from drowning. Something which

saved my life. His actions prevented the spinal cord from

further damage at a higher

level, effectively saving me

from losing the ability to

breathe. Without his forward thinking I would have been

thinking I would have been left ventilated, much the same as

Christopher Reeves or possibly

worse. Unfortunately, I think

all we hear about with

disabilities are the sob

stories and about how bad it is

and now I understand why.

Lying in the water that day

what instantly flashed through

my mind is "This is it, my

life's over, there's going to

be no job, no missus, no

future, everything's done. " It took

It took about two days of

feeling sorry for myself in

intensive care until I made the conscious was no point moping around that

it was time to get on with it

and get sorted out and

fortunately for me my fantastic

family had the same attitude.

But - and it's But - and it's a big but -

getting sorted wasn't that

easy. In fact, despite my will

to succeed it was incredibly

difficult. Partly because

difficult. Partly because I

didn't receive compensation.

Mandurah is a small town and

while they did community

fundraising to help my family out, basically with house

modifications, that couldn't

provide me provide me with care. Except for Silverchain getting me up in the morning we had no

support in the home until three

years later so it was up to my

mum, dad and brothers mum, dad and brothers to do it

all - feeding,

all - feeding, showering,

toileting, putting me to bed,

everything. Being around me

became a job and my family were

forced to help with personal

care tasks that made them uncomfortable, because they

were family and you can imagine

a family of four brothers.

Some things are best left untouched. I didn't have my

beautiful service dog until

many years later so if there wasn't anyone at home,

wasn't anyone at home, I

couldn't get anything, a drink

or any food. All that work

took a toll on my family's

backs and it took a toll on

them. It meant mum couldn't go

to work. Dad had his own

business so at times when she

couldn't be there, he'd have to

cancel jobs and lose money to

come home. I simply wouldn't want to ask

want to ask for things them the burden. The

crayfishing dream was not going

to happen, so I went back to

school, back to uni and I got a

psych degree and landed a job

as a city development officer.

I helped to build a sense of community, to develop confidence

confidence and nurture leadership skills for young

people, something I love. I'm

also now registered as a

psychologist and I work up to

psychologist and I work up to

50 hours a week. I have the

knowledge. I design the programs and the project deliver them and I'm ultimately

responsible for their success.

But I need assistance on the

physical side. I can't get things from the printer, I

can't write the addresses on mailouts, I

mailouts, I can't set up rooms

for meetings and I

for meetings and I can't travel

alone. The arrangement works

and I can proudly sit here as

the 2011 West Australian Young Person of the Year and 2011

West Australian Most

Outstanding Youth Worker to

things get crazy. I've gotten

to where I am on un sustainable

surplus funds and goodwill.

I'm entitled to 10 hours assistance assistance at work, which leaves me with not enough

leaves me with not enough

support to do the job and this

is the crazy part. If I resign

tomorrow, I'd be eligible for

up to 40 hours of support to

take part in activities that I

consider a waste of time for someone with my potential,

going bowling or fishing.

Anything but go to work.

years to get this fixed. If I

were able to choose how to utilise

utilise the funding and

received enough funding, I

could increase my employment

support worker assistance. It

would be a sustainable

long-term solution. The

additional tax that the support

worker and I would pay plus the

disability support pension

expense saved would mean the Government would actually make

money. It's a classic win-win

that everyone I've talked to

can see, but so far nothing has happened. Under an NDIS, though,

though, no-one would have any

of the problems I've mentioned, because it would be about

getting the care you need when

and where you need it and

importantly having control over

where that money's spent. I'd

be entitled to my support. I

wouldn't have to compete with

other people with disabilities

to cry and to beg and to see

who's the most desperate and

that's how funding is currently

accessed. Imagine what I could do with

do with all the energy that the

constant struggling takes out

of me. I would know my job was

ongoing, that I could mortgage, make plans for a

future family with my wife and

I could move towns and States

and pursue a career in whichever direction it might

take me, because the funding would go with me. It would be

like being any other Australian. It would be fair.

Now there's a simple reason why people who

people who have injuries like

people who have injuries like

myself instantly feel life is

over and that's because the

current system makes it that

way. My ability to succeed in

life is totally reliant on this

dysfunctional system and I

worry about what

changed. What will happen with

my job? What will happen with

my new home? What impact will

that have on my that have on my family? I don't

want to be in a story that says Western

Western Australia's Young

Person of the Year and most outstanding youth

outstanding youth worker is

down and out, which at this stage

stage is still on the cards.

When I was lying in the water

and later in intensive care I

was convinced my life was over.

I now know it wasn't, but I

also know how much I've had to battle of that. I don't want others

who get a disability in the

future to have to go through

that same scenario. I want

them to know while their life

is going to be different

is going to be different it's not going to be finished. I

want them to know their life

can be great. They'll get the

help and planning to get them

there. That's why I'm here today

today and why I'll talk up the National Disability Insurance Scheme until we see it in action and that's why I'm

asking everyone to sign up to

the campaign to stand alongside

me - a bit of a funny one

there! - and for everyone to keep

keep the momentum going, cheers for listening to my

speech today. Thanks. Thank

you very much, Peter. Before I

take questions from the

audience, I'd like to

acknowledge our Auslan interpreters. Thank you very

interpreters. Thank you very much for your contribution

today. It's possible we may run respond our scheduled time.

If anyone feels they may need

to live because of commitments

if you could do so as easily

and quietly as you could.

We'll take questions. I came here today perhaps

here today perhaps thinking of

discussing the politics of the National Disability Insurance

Scheme, but listening now I

think that this is a perfect

opportunity to get politicians

to listen. If I can ask each

of you if the National Disability Insurance Scheme implemented tomorrow, what is

the one major thing in your life that would change from

today until tomorrow? Start

with Peter and with Peter and work along. Lucky first. I think for

for me my whole future, particularly around employment,

it runs on the smell of an oily

rag. I haven't got a guarantee

from one month to the next that

everything is going to be oOK,

so I'm constantly finding ways

to keep employed or to keep

life moving forward. life moving forward. Having an

NDIS come along would end that.

You wouldn't have to spend time

worrying about how to get to the next stage of your

the next stage of your life.

You could expect that to happen and actually concentrate and actually concentrate on making that happen to the best

of your ability. That would be

the best thing for me.

Rhonda? I'd age gracefully, in

that I'd give up the fight and

go and relax, because until

this is fully up, that's not possible and thousands of Australians

thousands of Australians each

month really who are just

absolutely languishing waiting

for this. It will make me

really happy and I'll be able

to be a graceful old lady. Paul? I suppose to be

straight and honest, it would

reduce the massive financial

burden that I'm carrying and

I'm going to carry in the

future. I'm well aware of the

huge costs and

huge costs and expenses facing

me and that would be a huge

lift not only off my

young wife. She's not here,

she has her life ahead of her, our girls 16 and 20, that

burden of financial... that

would be a huge thing for me.

I have no sense of feeling in theory, I

theory, I don't see myself as

the victim or the population

and community looking down upon me at

me at all. Sometimes people with with disabilities feel that

maybe people, you know, they

feel second class citizens or

something, I don't feel like that at all. One of the things, the things, the scheme

things, the scheme is admirable

and I think it is high time we had something along these lines

introduced. The problem the

Government has got as you

touched upon is money and

they've got a commitment to do

stuff on dental care, and aged care reform is another issue and obviously last week the

Prime Minister's announcement

on more pay for community

sector workers. I'm wondering if you're concerned

if you're concerned you if you're concerned you may end

up with a compromise sort of

scheme because of all these other commitments that the

Government has made and what

you can do to put the pressure

on to ensure that doesn't

happen? You're on the advisory

committee, perhaps you'd like

to start, I'll invite the

others to comment if they'd

like. I think the first part of an answer to that question is

an answer to that question is

that Australia's been very well managed economically over the

last few years. I'm glad I'm

here and not in Europe or

America. The point of good economic management is economic management is really

to do stuff like the National Disability Insurance Scheme

fully and I feel very sure this

is going to be a real legacy

for the Government. I

for the Government. I know the

Opposition is completely

supportive. Mr Abbott

mentioned that last week.

says no to many things the

Government puts up, but on this

one he's completely pro and I think

think it's good to see the Scheme not in the middle of

partisan warfare. It's rising

above that, which is good. It will

will be every person in this

room, every Australian with

interest will be part of the

design and it's up to all of us

to make sure it is a really good

good system and with the

Productivity Commission as

guideline. Do you feel any

concerns? In my professional

life, we constantly have to win

the argument that education is not just

not just a cut off the bottom

line, but it's an investment.

If you can demonstrate that,

that's half the battle. It's

an investment. The flipside is you always ask the question

well, if we don't invest in

this, what have we got and what does the sort of issue facing the

American Congress at the moment

about what to do about the economic crisis there. I think they're the two presentlies that

that I professionally always

operate off. That's the point you're making about your

ability to work and not gain the

the level of support, but if

you don't work you can get

it. I guess from my point of

view, I see employment as being

obviously I like to work and I

love going to work every day,

but in terms of disability

support, employment is the

you don't get the pension which

is a great thing. For me it

was a celebration to get off

the pension and you don't get

that. You pay tax, you contribute to your community and at the same and at the same time you're getting support, but that's sustainable, because you're

contributing to that. While obviously not everyone is going

to be able to achieve work for

whatever reason, if we start

talking money, for someone in

my personal situation that's

my personal situation that's

not an argument, by supporting

a place for me to be at work,

that's going to cover it

anyway. Finance shouldn't be an issue there. I'm going to

continue to dwell on the

finance of the matter. There

have been a couple of ways that

have been proposed about how

Government could get to funding

this sort of scheme, either by

finding savings in existing

finding savings in existing

budgets or looking at a

Medicare-style levy. If you

were advising governments and

oppositions, which direction

would you urge them in? would it be possible to sell a

Medicare-style levy to the

public? Do you think there is

receptiveness in the community,

even though that would mean

essentially a tax hike for most working

working Australians? There are

at least three schemes in at least three schemes in the Productivity Commission Productivity Commission report

that are discussed and from my

listening to people with

disabilities, as long as the

money's secure and not facing the annual it's sustainable so that it's

across a lifetime for the pool, as long as

as long as it's not buckpassing between States and Commonwealth, as long as it's

out of that, I think people

with disabilities just want to

see it really, the method is clearly up to the governments,

government and the States. But

I think those characteristics would be very much welcomed.

think somewhere in the Productivity Commission it

extrapolates... is it five

years out after it's fully

implemented Rhonda, where it

says it becomes cost

neutral? Well, I think that's a

very good point. They do a

cost benefit and this is a

scheme that will have such

great returns in productivity.

It's really

It's really going to be a centrepiece actually of cost

benefit for Australia. That is

a very good add that 10 years ago before add that 10 years ago before I

broke my neck and became

disabled if someone had said to

me that there could be a tax increase to cover something like like this, I possibly would

have been of the opinion "Why

should I pay for that, I'm not disabled?"

disabled?" Look where I am

now. You don't know what's

around the corner, so my

message to anyone out there

would be you don't know where

you're going to end up, it's

not just about people with

disabilities, but every person

dealt a blow, basically. Being

an optimist, I'm

an optimist, I'm presuming that

the NDIS gets up and running

and I hope for everybody's sake

it does. My question was more

practical. I have a friend in

Canberra hospital at the moment

in the sort of nightmarish

conditions you're talking

about, stuck by fault of

bureaucracy from being able to

go somewhere else and it's made

me really focus on the realities of what happens when the the NDIS gets going. Who's going to

going to run it, who's going to

fight off the empires who currently control a lot of

these services, because that's just human nature? You talked a

bit about top up and bottom up

advocacy and development of

this scheme and I wondered

whether you believe there's

enough capacity to influence

the way new bureaucracy works

so that it will work as you

so that it will work as you

want it to want it to work? We should

start with you Rhonda, but

maybe the question to the

others is who should run it? The National Disability

Insurance Scheme is definitely about funding. The system's

underfunded by half, but the National Disability Insurance Scheme

Scheme is about complete reform

of how things are done now and now individuals and their families have no families have no say. They

don't... there's little trials

around Australia, but there's

not a real commitment to there

being a marketplace. The

ability to actually decide what services you'll have

services you'll have where and

to really manage that isn't in

Australia and the centrepiece

of the Productivity Commission

recommendation is what's called

individualised funding with a

core of that being and that's what you choose to

do. If you don't choose to do that, that's fine. That's

going to mean going to mean services will have to be more responsive. There's going to be lots of

There's going to be lots of new

services. They

been invented yet the sort of

responses that will occur from

innovation and change. That's

tremendously exciting, and the governance under the

Productivity Commission is

commercial number one and

really running this incredibly transparently

so the fund is secure. So that's

that's the insurance model that

I think is also very valuable.

The second part of the

governance is that the incentive is on getting you

what you need, because it is an insurance model. So letting

you languish in hospital doing

poorly won't do well for the

fund. I hate perverse

incentives and I love really

positive ones like

positive ones like that and the

governance is a really issue. That's why it's really

important and Peter's

illustrated it - it has to be national, because you want to

be able to go anywhere in

Australia. You don't have these differences where

it's a lottery of a post code

really, and people actually

move. They move to live in a

particular region and they

never move again, because

that's where they think

that's where they think they

get barely enough. In inviting

Paul and Peter if they wish Paul and Peter if they wish to

make commaent, I could throw

another element into it. seems funding of itself does

not solve a problem of a lack

of coordination of services,

which seems a common theme...

well, it is a common theme and

anyone who's had in this area knows it's a

significant problem. What can

be done about

be done about that, let me

start with Paul. In the best of

all possible worlds, hey. I'm blowed if

blowed if I know. When you

look at the whole area... let

me give a couple of examples.

If like I am you're a high

needs paesht, I'm not aged

care, but I'm a high needs

patient, the system of nursing homes doesn't cater

particularly well for that

distinction. You'll often find

people , say, Peter's age and younger... I don't know figures I shouldn't say that, but there

are young people in nursing

homes who are there because

they're high needs, but they're

with old people. Secondly,

I've done some research and

I've found at least one nursing

home says no if you a high needs permanently you can't

can't go off to work. You pay

your bloody several hundred of

several thousand dollars bond so there's something wrong

about that. If a person's

employed as I and Peter are for what

what we can do with our brains.

I'm presuming Rhonda does, but I don't know what

I don't know what she does...

if we're employed for our

intelligence - my PA at work is

Maria, she has nursing

qualifications. If you can set

up arrangements where that can

be done, why should you be forbidden to

forbidden to work when somebody

is in a high needs nursing

home? There's something crazy

about that. I'm not professing to be anecdotal. I don't know what

the research would say. From my

side of things, yes, nationally

is important. I think it's

about whatever we do here, we

need to make sure that

ranges yes across States and across

across Australia, but it needs

to be all in one basket. The

most frustrating thing for me

recently trying to sort out my employment situation has been

that some things are funded by

the State, some things are

funded federally and it's in

different baskets of money.

You're just working out the system

that's the big thing for me.

Dr Galbally in your address

two years ago you mentioned the

report of the organisation of

which you chair, it gave one of

the first contemporary comprehensive reports of

disabilities, people with

disabilities and their carers. One of its prime

recommendations was the

establishment of a National Disability Insurance Scheme,

but it was also much more comprehensive. Are there other

priorities you think you and the disabilities alliance should be should be addressing, in what order... are there other priorities, other things we

should be looking at once we've got such an achievement? I

think the great thing about

think the great thing about the National Disability Insurance

Scheme at the centre is that

it's going to require major reform reform in many other systems.

Education would be one because

education relates to jobs and

to living in the community and

to having a fully participative

life. So the education system

being reformed - the Government

has the national disability

strategy with other systems in

it, but the

it, but the pressure on them to

really deliver where they interface with the National Disability Insurance Disability Insurance Scheme will be very strong and I will be very strong and I guess

I put education at the top of

the ladder 'cause I

so very important. I'd like to ask this of anyone ask this of anyone prepared to

answer it. You're all sounding very confident about very confident about the commitment to the

commitment to the

implementation of this scheme. The last time anything

comparable was attempted was in

the Whitlam years and it fell

in a heap. Given the fact that

all governments since have

become more risk adverse about

taxing and raising revenue, do you feel your confidence you feel your confidence is

well founded? Who'd like to have a

have a go? Look, I'll start.

I've been around nearly as long

as you I think and I was around

when Medicare actually was

under design, so I've seen

really major social policies for Australia and this is one

of those, and I do feel

confident. I do think that the

tide's changed not just with

the government of the day, but

with the opposition and all the

parties that they do want a

legacy, that they see that this

is very, very important and I do feel very confident actually

that it's going to happen. I

haven't felt like that, really.

It was very bad luck it didn't

get up in '72 'cause it was

get up in '72 'cause it was

nearly up. I think really it

is going to happen. There's statements, including just the latest one was last night at

the National Disability Awards dinner where the Prime Minister

indicated that this is indicated that this is her

legacy policy that she really

wants - not that she wants this

to happen, but it will happen, that's what she said and I think that's a very

think that's a very public

statement and a very big thing

to say. The last question will

be mine, it's one I put to each of you. This is to be rolled

out from 2013, it's now 2011,

that's another couple of years

or at least 18 months right

through until 2017. What should happen in the interim, what

what can happen to improve

this? Presumably we don't want

to tread water. If we did

tread water we'd be going backwards. We're on target with the Productivity Commission

guide. If you treat this as a

guide, they've started quickly, they've got the

infrastructure in place that's

been recommended, the time for action will

action will be 2013, that will

be another Press Club I hope to

see all going well and there's a

a timetable here. I've got no

reason to think that won't be adhered to. I've got every

reason to think it will be. It

started on time and on budget according to this plan in the

Productivity Commission report.

Is there something that needs

to be done before we get there?

There's a lot that needs to be

done, should we be

things now that can be done in advance? There's an enormous

amount that needs to be done.

Pulling it back a year is heroic, but

heroic, but really tough,

because this is a very, very

major reform and the timetable

that's being developed at the moment with the

the first step and chunks of

work are being all sorted out.

There's an enormous amount to

be done. We don't want this to

just be money. I'm not saying

" just money" I know that's

important, but if it's not

important, but if it's not

complete reform as is

recommended here - and I'm sure it will be - then the value of

it won't be really nearly as

much. Closed Captions by CSI

THEME MUSIC

(Muezzin sings call to prayer) In Islam, they say that Allah took a handful of the south wind and created me. He named me 'Arab'. Goodness was tied to my forelock and booty came from the strength of my back. I was to be held above all beasts - lord of them all.

STIRRING, HEROIC MUSIC HORSE NEIGHS As Equus, the Ancient Greeks believed that I was the gift of Poseidon - god of the sea. EERIE NEIGHING Horses pulled his chariot beneath the waves

and the winged horse Pegasus came from his union with Medusa. I became Poseidon's gift to the Athenians, the embodiment of grace and speed.

I had the power and freedom to roam the earth. On the hills of ancient Celtic lands stand images carved in my honour.

Once the steed of the sun god, I was protected by the goddess of fertility - Epona. Unique among the Celtic gods, my power survived the Roman conquest, and I was given my own festival.

(Crowd cheers and shrieks)

(Members of crowd sing to drum beat) Each May, to celebrate the rites of spring, people still dress in my image and dance before a symbol of fertility. DRUMMING AND SINGING CONTINUES (Crowd sings) # In the merry morning... #

Should I catch a maiden, then within the year she shall be with child, such is the strength of my gift. (Woman calls out) (Crowd sings) # In the merry morning of May. #

(Man shouts) (Crowd yell response)

(Crowd sing sombre song) (Crowd continue singing sombre song) CROWD: 'Obby 'Oss! INSECTS CHIRP, FROGS CALL In the villages of southern India, I am associated with fertility in a different role.

Here, the people of Tamil Nadu tell how water and clay, impregnated with the seed of the god Shiva, gave rise to the great protector - Lord Ayyanar. The water and clay of his genesis have become sacred. Every year, the village priest, the potter,

fashions mounts in my image as gifts. DISTANT DRUMMING The finished clay horses stand silent, awaiting the procession to the open-air shrine. Forever alert, they listen and wait for Ayyanar's call. HORNS AND DRUMS PLAY

In return for his steeds, the Lord Ayyanar rides through the fields, protecting the village from evil. Wherever I have run, my