20150318 NDS 2015

6th Annual National Disability Summit

2015

Wednesday, 18 March 2015

Held at Sheraton Hotel, Melbourne

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Tina Karas: Good morning, ladies and gentlemen, welcome to our 6th

Annual National Disability Summit.

I would like to being by acknowledging the traditional land owners of the

land on which we meet today, the Wurundjeri people of the Kulin nation.

I pay my respects to their elders, both past and present.

Before we begin this morning, I'll run through a few administrative details.

The folder you received this morning includes an updated copy of the

program and a light blue piece of paper, which has the address of

SlideShare, which is the server that will be loading all the approved

presentations for you to download. The presentations will include an

updated copy of the documentation that was presented at the workshop

yesterday.

We have free wifi in the room. If you look at your settings and choose

informa as the domain, the password is Sheraton1. The details are on the

screen behind us.

The other coloured piece of paper you will find in your conference pack is

the yellow evaluation form.

This is now our 6th annual event specifically looking at disability. Each

year we try to keep the format and the content engaging and relevant. We

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have introduced a number of new initiatives this year, which are in direct

response to the feedback we receive. We will be collating that feedback

and passing it on to the speakers, so your comments are greatly

appreciated.

One of the initiatives is the online networking tool. Everyone, hopefully,

received an email on Monday or Friday, from Informa with your unique

log-in details. Everyone in the room has a unique code. Once you click on

to the link and include your unique code, you will see an electronic list of

delegates, which is very much the same list that is out on the registration

board, so it includes people's names and positions.

More importantly, it allows you to contact certain individuals on that

attendees list without having any of your personal information on display.

That server is currently active and will be active for the next fortnight.

There will be, I imagine, a number of people tweeting from the event. If

you are tweeting, we ask that you use the handle #disability15.

All of the refreshment breaks today will be served in the foyer.

Refreshment breaks are also a convenient time to visit the restrooms,

which are located at the end of the corridor and to the right.

Please make note that the hotel does not have any fire drill scheduled for

today. In the unlikely event of an evacuation, the hotel has a two-tiered

alarm system. Staff will come into the room. We have been asked to exit

via the main doors we entered and take the stairs down and we will be

escorted to the emergency evacuation area. There is a list with further

details of that procedure also on the registration desk.

Now it gives me great pleasure to introduce to you our chair for today,

Suzanne Colbert.

Suzanne is the founding chief executive of the Australian Network On

Disability. Suzanne commenced her work in the disability sector over

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20 years ago, assisting people with significant disability into well paid and

sustainable jobs. She then became founding general manager of the high

performing disability employment service and inaugural chair of the peak

body representing employment services for people with disability.

In 2010, Suzanne was awarded an AM in the Australia Day Honours List.

In 2013, she was inducted into Disability Employment Australia's Hall of

Fame and was shortlisted in the same year for the Women of Influence

Awards. Please join me in welcoming Suzanne.

APPLAUSE

Suzanne Colbert: Thank you. Good morning and welcome. Firstly, I too

acknowledge the traditional owners of the land on which we meet and pay

my respects to elders past and present.

I am very pleased to be here to participate in the summit and I really look

forward to the presentations and indeed your questions which I believe

I will be fielding.

I believe it is my job today to keep us on track and on time.

I want to talk a little bit about the work we do at the Australian Network on

Disability. Our mission is for people with disability to be included in all

aspects of business. That means to be welcomed as customers, as

employees, as stakeholders and indeed board members.

We work with over 140 organisations from both the public and private

sector, to help those organisations understand what it means for them,

what they need to do and why they should invest in ways to make it easier

for people with disability and their families to engage with them.

You might be surprised to know that very large complex organisations

really don't have a clear line of sight to what is expected of them, how they

should be inclusive and make adjustments to accommodate the needs of

customers with disability and indeed the steps they can take to welcome

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skilled and talented people with disability into their workforce. Many of

them absolutely have given very little thought to what it is that they need to

do, and that's what Australian Network on Disability is there to help. We

are like a self-help group for employers, to help them be better at including

people with disability. So a key thing we do is facilitate learning through

each other.

We believe that employers can drive disability confidence, engagement

and action and empower network and relationships and collaboration to

achieve change and to share knowledge.

We believe that people with disability are social and economic contributors

with skills and capacities who are entitled to equitable outcomes that

create choices and economic empowerment.

I want to give you an example of one of the things that we have done by

bringing employers together and asking them to solve some of the

problems.

When we ask employers to come together to achieve these aims through

collaboration and co-design, we create genuine sustainable opportunities

for inclusion.

Just before 2005, we were receiving a lot of phone calls, particularly from

law students with disability, who felt that even when they graduated or

indeed when they had graduated they were never going to get an

opportunity to work in a law firm or to practise, after the many years of

study they had completed at university.

We asked some law firms to come together and say what kinds of

solutions can we provide for students. Because there are a lot of students

with disability that may have significant mobility restrictions or vision

impairment or hearing impairment, but trying to get an opportunity to

compete in a large firm or indeed in any organisation is very problematic.

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The firms decided they would offer a winter internship. It took the pressure

off their usual vacation approach, which was a summer clerkship. The

summer clerkships, usually they would get 1,200 applications for 40

positions, so it made it very hard to give students with disability an

opportunity.

Through designing that winter internship, that was exclusively for students

with disability, that proved to be a great success. Indeed one firm, Sparke

Helmore, is celebrating 10 years of providing those opportunities to student

with disability. More importantly than Sparke Helmore's fantastic

contribution is that internship program has now morphed into almost every

single discipline and, as a result of that, hundreds of students have had an

opportunity.

When students participate in an internship, in fact they more than close the

gap in graduate outcomes between students with disability and those

without disability.

So I think it is the importance of realising that neither government nor

community organisations can solve any of these problems alone. Our

great challenge is about how we work together to create solutions. That

means people with disabilities, their families and businesses, all need to

work together to create welcoming and inclusive communities, because it

is indeed everybody's business.

On that note, I would like to introduce the Hon. Susan Ryan AO, Age and

Disability Discrimination Commissioner from the Australian Human Rights

Commission. Susan was appointed as Australia's first Age Discrimination

Commissioner on 30 July 2011 for a five-year term.

Up until her appointment as commissioner, Susan was the independent

chair of IAG and NRMA Superannuation Plan, Pro-chancellor and council

member UNSW from 1999 to 2011, chaired the Australian Human Rights

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Group since 2008 and was women's ambassador for ActionAid Australia.

From 1975 to 1988, Susan was Senator for the ACT, becoming the first

woman to hold a cabinet post in a federal Labor government. She served

in senior portfolios in the Hawke Government as Minister for Education and

Youth Affairs, Minister Assisting the Prime Minister on the Status of

Women and Special Minister of State.

Indeed, a topic close to my own heart, as Education Minister, Susan saw

school retention rates double and universities and TAFEs grow

significantly. She pioneered extensive anti-discrimination and equal

opportunity legislation, including the landmark Sex Discrimination Act.

Susan's full bio is your hand-out, but I encourage you to welcome Susan.

I am very pleased to be in the same room as her. Welcome, Susan.

APPLAUSE

Susan Ryan: Thank you and good morning.

I too would like to start by acknowledging that we meet on the traditional

lands of the indigenous people. I wish to pay my respects to their elders

past and present and to any other indigenous people from other lands who

might be with us today.

I thank the organisers of the summit for inviting me to speak.

I am pleased to be able to talk to you today, to give you, probably some of

you for the first time, an idea about how I am approaching my new role as

Disability Commissioner and how I see the particular issues that this

conference is dealing with.

I think the information exchanges and the outcomes from this conference

will take us forward to what I see as our great shared objective, and that is

ensuring that people with disability are included in every way in our society

and our economy and that equality of opportunity is available to all of them.

Well, we are at a time in our nation's history when disability issues and

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people with disability have never been so prominent in Australian

discourse. This historic moment, I believe, provides us with many

opportunities, particularly for those of us who have special responsibilities

in relation to the human rights of those with disability.

I thought I would say a little bit about how I approach my own work at this

important time. My role as Disability Commissioner at the Australian

Human Rights Commission requires me to keep a strong human rights

focus on all disability issues. I do that in cooperation with my five

commissioner colleagues and the president of the commission. Just as

key to my work is establishing partnerships and consultations with the

many disability advocates and advocacy organisations we are fortunate to

have working in disability rights.

Much of my work at the commission focuses on addressing the

discrimination that people with disability experience. The Disability

Discrimination Act 1992 provides individuals with the opportunity to bring

complaints where any discrimination covered by the act has been

experienced.

Now, complaints under this act, the Disability Act, to the commission are

easily the highest number of complaints we get each year. That is not in

itself good news but it is important. The good news, however, is that many

of those complaints, up to half of them, are resolved satisfactorily through

our conciliation process. So the act does provide important protections

but, of course, it doesn't comprise all of our work in support of people with

disability.

We also invest resources in supporting positive policy developments,

proposing law reform where necessary and educating the general

community, employer bodies and others, including, of course, the media.

When I was appointed as the Disability Discrimination Commissioner last

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year, I decided that consultation would be the key to my approach and that

the priorities of my work would be informed by people with disability

themselves. As soon as possible I convened a National Disability Forum,

which was crucial in informing me about the most urgent and most

important issues. The forum was well attended by a range of people and

organisations and what I learned from them was supplemented by an

online survey which was responded to by over 500 people. From this

input, I formed the view that the top priority in my work would be improving

employment opportunities for people with disabilities.

Well, of course, that objective, employment, necessarily involves improving

access to education and training, accessible transport and breaking down

negative attitudes by employers and the community generally.

More recently, at the end of last year, I went to Tasmania to meet the

stakeholders actively involved in disability reform. I was encouraged and

impressed by the roll-out of the NDIS in that state and the positive

feedback by consumers that I received on the roll-out process.

I realise that, even though we have started on a positive journey in

disability reform, many needs remain to be addressed. For too many

years people with disability were kept outside of policy development and,

as a result, it has taken us a long time to be able to conceive a world

leading scheme like the National Disability Insurance Scheme.

The realisation of the NDIS is due in large part to the hard work of disability

organisations, particularly representative organisations and advocates, and

I congratulate all of you who are involved in that work. It is a major reform

for Australia on a level with any other major reform we have ever seen

since the parliaments of Australia started meeting.

Now is the time of opportunity. Now the NDIS is here, with its continued

development and roll-out we will continue to experience challenges but,

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more importantly, there will come opportunities. Given the strong

bipartisan support for the success of disability reform in Australia, these

opportunities can be expected to continue well into the future. We are in a

strong position, in that we can take a long-term view with this reform. All

the elements of it are supported right across the parliament.

Disability reform and in particular the establishment of a full NDIS is a long

game, requiring support from both sides of politics. Happily, this exists and

I have no reason to think it will change. We can harness this bipartisan

support so that when challenges do arrive we can act constructively.

The roll-out of the NDIS presents us with an historic opportunity to bring a

problem-solving approach to all issues and work together as policy

makers, service providers, carers, families, advocates and, most

importantly, people with disability themselves.

The best way to ensure that public policy is effective and relevant is within

the capacity that we all have to present options, solutions or proposals for

policy makers to continue. No one person or organisation among us has

all the answers. However, working together, we are likely to come closer

to solutions that suit us all.

Over my long working life I have learnt to value the power of consultation

and collaboration and understanding shared responsibility. We all have a

responsibility to ensure the coverage of the scheme is as broad as

possible. For example, orienting the scheme so that people living in rural

and remote areas will have adequate access to services they require,

including choice of service provision, will be crucial. Ensuring people with

intellectual disability connecting with the NDIS are provided with partial

assistance that promotes their independent decision-making is important to

respecting their human rights.

We know that indigenous people with disability experience particular

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challenges when it comes to accessing services. Developing a system of

service provision that addresses these challenges, especially in the remote

areas of Australia, about which we have heard quite a bit lately, is also

ahead of us.

Respecting the rights of people from linguistically and culturally diverse

backgrounds and the sexual orientation, gender identity and inter-sex

rights of people with disability is also a conversation we have to have

during this time of reform to disability services in Australia.

No one must be left out. This massive new scheme is for all people with

disability and those of us who are advocates must continually monitor

developments so that this big promise is delivered.

Part of making the scheme work is that when it doesn't there must be in

place an effective complaints management process. As I have already

mentioned, at the commission we have our own complaints system for

dealing with disability discrimination issues. It is important that individuals

bringing complaints in relation to the NDIS have an equally effective and

accessible system for investigation and settlement. I understand that the

current mechanism is that the NDIS has an internal complaints system with

appeals to the Administrative Appeals Tribunal. We are all keen to see

how well this arrangement works, and I am pleased to see that this is a

topic that will be addressed later in this conference by a person no less

than Professor Ron McCallum, and no one would be better to inform us

about this.

I also recognise the consultation under way for an NDIS quality and

safeguarding framework. I would simply stress again that this framework

needs to reflect the principles of the Convention on the Rights of Persons

with Disabilities.

Back to my own work. At the commission, just last week we received

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official confirmation that we will be conducting a national inquiry into the

employment related discrimination against older Australians and

Australians with disability. I welcome the decision of the Attorney-General

George Brandis to refer this inquiry to us. This national inquiry is an

opportunity to get a much stronger focus on the workplace barriers that

affect people with disability. Given the anticipated increase in people with

disability moving from disability support pensions into paid employment,

understanding and addressing barriers to getting and keeping a job will be

crucial. In fact, I would say the one can't happen until the other is in place.

People should not be moved off benefits until it is clear they are able to

secure jobs and keep them.

As we establish a consultation plan for this inquiry, I hope that many of you

present will make submissions to us and help guide the inquiry to the best

possible findings and recommendations.

The importance of building our knowledge base on options for positive

disability reforms was affirmed for me last week through a research

roundtable that we hosted at the commission. This research roundtable

was convened in conjunction with the University of Canberra and looked at

the current and future disability research agenda in Australia.

Understanding what research we are currently doing, what the policy

priorities are, where the research gaps are and what we should be

investing in for the future is important to inform policy reform.

While research has traditionally been viewed as a domain for academics

and research institutions, the theme in the roundtable last week was one of

collaboration. Collaboration among all stakeholders, including people with

disability themselves, and service providers, yields the best outcomes for

research and policy relevance.

The ability for all of us to be able to tap into the research that our

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academics are engaged with will be invaluable, I believe, to inform service

delivery, which brings me to the key partner in all this, the service

providers.

The disability reforms and the new model of funding the NDIS are

challenging providers in ways that they may not have expected and for

which, as yet, they may not be entirely prepared. It is a great step forward

for people with disability to have the choice of how to spend money that

directly affects their participation. But we all know that consumer choice

does come with challenges. I am confident that service providers want to

respond to these challenges effectively and will be successful in working

out how to do this. At the same time, of course, they need to ensure their

business or organisation remains sustainable and able to deliver ever

higher quality.

Essentially now, providers will deliver what is needed, what is chosen, as

opposed to what is available or easier to provide. Consumer directed care

is an approach that is firmly based in human rights. For this reason

I support it totally and look forward to seeing it work in practice.

Given the breadth of knowledge, experience and commitment at this

summit, I'm confident that you will have a productive two days and

contribute positively to the dynamic changes under way in disability policy

in Australia.

Thank you and I wish you well for the summit.

APPLAUSE

Suzanne Colbert: Do we have any questions for Susan? If you have

questions, if you could say your name and wait for the microphone, that

would be really helpful.

Karen Sait: Susan, thank you, that was great.

My name is Karen Sait from the Transport Accident Commission in

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Victoria. We work with a range of people with disability and health issues,

et cetera.

I wondered if you would comment -- I think the future work is fantastic -- on

how Australia fares in relation to other countries in relation to our

employment rate, particularly with older Australians and also people with

disability.

Susan Ryan: The short answer is not very well. Certainly with regard to

disability employment, we are very low down on the OECD list, I think 16th

or something. My predecessor, Graeme Innes -- I'm sure you all know

Graeme -- drew attention to this time and time again, and it is one of the

other reasons why I am determined to make some inroads.

Why we have such a low participation rate, compared with New Zealand,

European countries and UK, is on the face of it very hard to understand.

We have a high standard of living, we have a very strong industrial

relations sector, we are an affluent society; why have we made so little

progress?

I don't really know the answer. I know Suzanne Colbert probably has a

few answers for me, and that is one of the things we will be looking at as

we develop this inquiry.

With regard to older people, we are doing better than we were but we are

still not in the top participation rates. New Zealand is a long way ahead of

us. I say, if New Zealand can do it, why can't we? I admire and like the

New Zealanders very much but I can't see why they should be so far

ahead on this important policy.

I think we have been very slack in coming to terms with it. I think that is

the problem: not enough energy, not enough purpose has been devoted to

it. But I think, with the arrival of the NDIS and all the other changes that

are happening, now is the time.

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Mary Nolan: Mary Nolan, from Inability Possability Victoria.

How can individuals, people with disability, small groups of people,

become involved in the inquiry and consultation?

Susan Ryan: I am turning my mind to that with my colleagues. My

disability adviser, Darryl Barrett, is here with me today, so if you have any

ideas, you can grab him at question time.

It is absolutely essential that such people do get input. What I am hoping

to be able to provide, fairly early on, is a dedicated website where

everything about the inquiry will exist: all of the submissions, except where

people request confidentiality; the program of consultations; comments;

input. I am hoping that that will be one of the big access points.

I will also plan to have consultations, at least in each capital city but I'm

hoping to be able to get to some of the regional centres too. When we do

that, we want to make sure that, through our networks and the networks of

everyone else, people will know that they can come along. Because we

are not going to solve this problem that our first questioner drew attention

to, of our very poor performance in disability access to education, unless

we get input from those who have experienced it, as well as, of course,

from the employers who need to be brought a long way towards opening

their employment policies.

Mary Nolan: Thank you. I think it is often the people who are really left out

and at the margins who are perhaps less vocal.

Susan Ryan: That is right. As we go along, if any of you believe that

some people are not getting the possibility of giving us their views, please

let us know, relying on the wonders of the internet, et cetera, and

telephones and so forth. We won't have a big travel budget or anything

like that, but we can listen to people, we can phone people and we can

have them on the internet. Please let us know, as we progress, if you feel

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we have overlooked someone, because that is not what we want to do.

Anita Veivers: Hi, my name is Anita Veivers from ARC Disability Services

in Cairns. I am interested to see that you say that you see that the scheme

will deliver a higher level of quality service provision. I am just wondering

how you see that happen, when the pricing at the moment is so low that

organisations are struggling to see how they will be able to continue to

provide supervision, training and development for their staff.

Susan Ryan: Well, it is the aspiration. It is the aspiration of everyone

involved in developing the NDIS that not only will people choose which

services they want their allocated funds to be spent on, but they will be of

high quality.

I understand there are a whole lot of issues about training, pricing and so

forth, which I have no power over, although I do spend a lot of time talking

about the need for much better workforce training for the disability sector.

However, we hope that by people choosing to allocate their funding to

things they know will be most useful to them, that in itself will be a quality

improvement. Again, we need to hear from people as they go along.

The hope is that the new scheme will be better than the old scheme. That

is why everyone has put effort into it and billions of dollars of public money

has been devoted to it.

Robin: My name is Robin, I'm also from Far North Queensland, and I'm a

consumer. It's always a bit scary to admit that. I have a mental health

condition and also a comorbid physical condition.

I'm reporting, at mid-50s, that I enter employment, I get a job, but I find it

difficult to sustain. I find another job, have a mental health episode and

stop working. One sector that helped me a lot was the Commonwealth

Rehab Service, in terms of a case management model. That service has

now stopped.

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I guess I'm really asking, I would like this new NDIS to really look at how to

manage the barriers, or can there be a troubleshooter attached to a client

who is really committed to trying to re-enter the workforce, and how you

can help them sustain the employment and participate in their

employment.

Susan Ryan: Certainly what you are hoping for we hope can be delivered.

Suzanne, I might refer to yourself, because you have had so much

experience with employers and placing people and supporting people who

might have episodes. Could you make a contribution here?

Suzanne Colbert: I am happy to make some comments.

Our mantra in relation to employment is that people with disability and

employers, who are the clients, the users of the service, should be front

and centre. At the moment it is primarily a transaction between

government providers -- sorry, they are not government providers, but

between government and the disability employment service provider. That

transaction doesn't focus exactly on what you say; how do we assist an

individual to be able to have a life where they can be included in

employment in a flexible way.

Actually, it is my life's mission to stop the name called "Job in Jeopardy",

which is the name of the program at the moment that requires to be

activated when a person in employment is unwell: let's send the team from

"Job in Jeopardy", which is enough to destabilise anyone who is working,

to be associated with a program with such a name.

I feel confident that Senator Fifield is listening, but it is 2018 before the

new employment contracts will be renegotiated, so I know he is interested

in interim measures that can be taken. But I think you have to call on

every bit of armoury that you can and keep using your voice to say that

you are a person who really wants to be employed, you know that is the

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mission of the current government, but you need support in order to

maintain employment. You believe that it is your right to access those

services as you need them. It is in your best financial interest, it is in the

government's best financial interest.

Robin: Also from your self-esteem, to contribute to society and feel like

you're participating in your life roles. For example, I have now been

offered a job for one day a week for three months only. Then you think,

then what happens?

Susan Ryan: Could I make a comment there. There might be a ray of

light with that particular problem.

You will all be familiar, I guess, with the McClure report. Patrick McClure

did a major review of the disability support pension and Newstart, with the

view, I guess, from the government's point of view, of reducing the number

of people who draw those benefits by transitioning them to employment.

The report that has come down I think is well worth reading, and I'm

generally in favour of the direction of it. There was one very important

element that I have already said to various ministers they should go with,

even if they spend time wondering about the other things. They are calling

it a passport, and it works like this: if you are a person who has been

assessed and you are on the disability support pension, you get offered

one day a week work or something similar, you don't know how long it will

last, you don't know even if it will work out. Right now, as you have

expressed, you think, well, this is very risky, if I take that and it doesn't

work out, where am I?

To overcome that very good reason why a lot of people don't take

short-term or casual work when it is offered, the proposal is that each

person who is on the benefit gets what they are calling a passport which

contains all your eligibility criteria. You go and do the job and at that point

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your benefit is affected, you might go off the benefit or it might be reduced.

If the employment doesn't work out, you automatically default to where you

were before you took the employment. So you haven't lost your basic

position, but you have had the opportunity to try some employment.

We all hope that employment will lead to more employment but, if it

doesn't, you are not penalised by having to go to the bottom of the queue

and get reassessed.

Now, it seems to me that is a very practical proposal to deal with exactly

the situation you are faced with. I have put that view as strongly as I could

to Minister Scott Morrison, who is now responsible for that, and also to

Minister Fifield. So you should be aware that is one of the proposals.

As I said, if they did that straight away virtually, while they are working out

what to do with all the other many good recommendations, I think it would

be a very good solution to the very real issue you have just raised for us.

So if you are talking to any of our parliamentarians, give the passport a

tick. That's my recommendation.

Suzanne Colbert: Any other questions?

No.

That means we can thank Susan and move on to the next presentation.

Thank you very much. Let's show our appreciation to Susan for her time.

APPLAUSE

Her words of wisdom, and I'm sure we all agree that we are very fortunate

indeed to have her being in the role she is in and we can feel confident in

the progress that Susan will make.

We will have a presentation from Senator Fifield, who could not be with us

today.

Senator Fifield is the Assistant Minister for Social Services. He was sworn

in as Senator for Victoria in the Australian Parliament in April 2004 and

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was re-elected in 2007 and 2013. Mitch also serves as a member of the

Prime Minister's leadership group and the Senate leadership team, as

manager of business in the Senate. I am sure we have all been keeping

track -- he would have had a busy week with the Senate this week.

Before entering Parliament, Mitch worked as senior political adviser to the

former federal treasurer, Peter Costello, held senior advisory positions in

the Kennett Government and the New South Wales Greiner Government

and also served as a reservist in the Australian Army Psychology Corps

and studied politics at Sydney University.

Because we don't have the benefit of having Mitch here, I guess, any

questions can be directed to his website afterwards.

Thank you.

Mitch Fifield: I'm sorry I can't be with you today, as I'm in Canberra for the

sitting of parliament, but I did want to say a few words, so thank you for

giving me the opportunity to speak to you via videolink.

I was delighted to see that the theme of this year's summit is what can be

done to transform service delivery in order to improve the economic and

social participation of people with disability.

Supporting Australians with disability, their families and carers, is core

government business. It's something the Abbott Government is

100 per cent committed to. We want to see people with disability

empowered with the support they need to achieve their goals and

aspirations. The national disability strategy is the roadmap for all

governments, state and federal, to achieve our shared vision for a better

deal for people with disability.

It goes without saying that the most significant action to date under the

strategy has been the establishment of the National Disability Insurance

Scheme. I'm sure that I don't need to tell any of you that the roll-out of the

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NDIS is reform on a scale unseen in social policy for decades.

The NDIS represents a considerable increase in disability funding for all

governments and the scheme is now operating in seven trial sites across

the country, in New South Wales, Victoria, Western Australia, South

Australia, Tasmania, the ACT and the Northern Territory. These trials are

crucial to ensure that we are able to learn lessons and glean insights that

will ultimately help inform the roll-out of the full scheme. Worth $22 billion

a year at full roll-out, the scheme will fundamentally transform the way

government provides support for people with disability.

Under the NDIS, a person will have their individual needs assessed,

receive their entitlement and then can direct that entitlement to the service

provider of their choice. This is a world of difference from the block

funding arrangements that have dominated the disability support sector in

the past. Previously, the individual had been largely invisible in the funding

arrangements. Governments had given money straight to the providers

and the individual had to simply accept the services that each provider

chose to deliver.

That is why the NDIS model is just so revolutionary. With the individual at

the centre and in control, they now have the power to take their entitlement

to the service provider that best meets their needs. I'm very strongly of the

view that this is the best way to provide greater choice and empowerment

for people with disability and their families. Dollars should follow need and

I think services should follow choice.

Contestability, competition between service providers and consumer

choice are at the heart of the NDIS. Competition drives innovation and

quality in service delivery, resulting in increased benefits and better service

outcomes for people with disability.

Of course, it is important that we have a system of safeguards in place,

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and the Disability Reform Council has recently opened a round of

consultations, as we look to introduce a national safeguard and quality

framework for the NDIS. I encourage anyone who is interested in

participating in those consultations to visit engage.dss.gov.au to find out

more.

Friends, I want to assure you that the government remains committed to

rolling-out the NDIS in full, come hell or high water. A reform of this

magnitude does take great effort and meticulous planning to get off the

ground. We can't just flick a switch and make the scheme spring up, fully

operational and ready to go. There is much to be done to ensure that we

get the foundations of the scheme right, so that we can guarantee that it

will stand the test of time, that it will be here to serve people with disability,

not just now but into the future.

We are learning very important lessons from the roll-out. One of those

lessons is that provider preparedness will be a key element of the success

of the scheme.

As the scheme transforms the way people with disability receive support

and care, it will in turn have a significant flow-on effect on the organisations

that exist to support people with disability, and I don't underestimate the

challenge presented by this shift to service providers. It will require new

business models and new ways of thinking about the relationship between

client and provider.

I hope that the next two days provide you with ideas and inspiration as you

consider how the NDIS will affect your organisation and the way you will

deliver services under the scheme.

The government is committed to being a constructive partner with the

sector, as we tread this road to change together.

We have contracted National Disability Services to kickstart the

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development of a National Disability Insurance Scheme workforce strategy

with a report into workforce issues. The roll-out of the NDIS will create

significant employment demand and opportunities in the disability sector,

and the strategy will be critical to the government's agenda to work with the

disability sector to optimise workforce and service provision.

While we must be mindful of the challenges, we must also not discount the

many exciting opportunities presented by the transition to the NDIS.

Thank you all for being here and taking steps to improve your own

knowledge and to gain insights about the future of the disability service

sector.

I hope the next two days help guide and inspire you as we transition

towards the new world of the NDIS.

Thanks very much.

Suzanne Colbert: We can applaud, even if he's in absentia.

APPLAUSE

Would you like to take the opportunity to make any comment in relation to

Senator Fifield's presentation? It would be just comment, of course.

Anyone like to make any comments? In that case, we will go to morning

tea and return from morning tea at 10.30.

Enjoy your morning tea. Be back in the room at 10.30.

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Suzanne Colbert: We might just get started.

I'm sure our next presentation is something that you have been looking

forward to -- I know I certainly have been.

I've been watching in awe of the development of the agency. We first

started working with the agency prior to launch, and their development and

their absolute dogged determination to make the National Disability

Insurance Scheme happen has been fantastic, and my hats off to their

leadership.

I am very pleased to introduce Stephanie Gunn, the Barwon trial site

manager from the National Disability Insurance Agency, as well as Sue

Ham, Tasmania and Northern Territory trial site manager from the agency.

I will talk about Stephanie briefly, then Sue.

Stephanie commenced as the NDIA Barwon trial site manager in February

2014, having joined the national office of the agency in Canberra in May

2012, where she was involved in scheme design and implementation

arrangements in each of the original trial sites.

Stephanie brings extensive change management experience from working

with all levels of government, industry and communities to achieve

sustainable reform, in areas as diverse as blood product management --

hopefully, there is none of that in her current job -- regional development,

local government and corporate governance and planning. She is

passionate about the difference an inclusive community can make and to

the richness of the life of that community.

Sue has returned to Tasmania to take up the position of trial site manager

in October 2012. She is currently the trial site manager for both Tasmania

and Northern Territory, which probably means she spends a lot of time

crossing the country. Sue joined the NDIA ahead of the 1 July 2013

launch to manage the operational requirements.

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So we have two very experienced people to tell us about the evolution.

Sue brings significant public sector, state and Commonwealth and

non-government sector experience to the NDIA, including six years across

management roles in the Department of Families, Housing, Community

Services and Indigenous Affairs, spanning house, remote indigenous

housing, community disaster recovery, and 11 years as chief executive

officer at Colony 47 in Tasmania, starting her career as a social worker in

the Tasmanian Mental Health Service Commission before joining the APS

in social work in the then Department of Social Security.

Sue has a Bachelor of Arts in Social Work from the Tasmanian College of

Advanced Education, Graduate Certificate in Public Sector Management

from Griffith University, Diploma of Company Directorship from the

University of New England. On a personal level, Sue has a strong interest

in social policy and values and the contributions that pubic servants and

the community sector make towards supporting a fairer and more inclusive

community for all Australians.

Could we welcome both Stephanie and Sue.

APPLAUSE

Sue Ham: Thanks very much for that introduction.

I would also like to, on behalf of Steph and I, acknowledge the traditional

owners of the land that we meet on today and to acknowledge past,

present and future traditional owners.

We have done this presentation differently today. We have got quite a bit

of time with you, so we thought we would interchange this presentation as

we go along, between Stephanie and myself.

We thought that in presenting this information together we would also

pause at different times through the presentation, so that we can answer

the questions that you may have, but also discuss the ideas that you have

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about the scheme and address any issues or concerns that you would like

to raise.

In terms of how we present the session, we have broken it into a few

different areas. Stephanie is going to cover data and performance to date.

We will both make a contribution to participant experience and learnings

from trial. Steph is then going to take us into building the power of the

community. Then we will move into some brief comments about moving to

full scheme, and we will have questions at the end of that time. Steph,

over to you.

Stephanie Gunn: First of all, can I acknowledge my colleagues in the

agency who have assisted in putting these slides and the data together.

All of the data that I am citing today comes from our actuarial report, and

I will talk to you a little about that as I go along.

Firstly, can I acknowledge the lived experience of many of you in this room

for your longstanding and endless contribution to improving and

strengthening the voice of people with disability.

In a very bold statement, I am very comfortable in saying that we are very

proud of the outcomes we have achieved for the first 18 months of the

scheme. It has been a bit of a wild ride, very passionate people, and an

incredibly large change program for everybody that we touch on a regular

basis.

What we are seeing from the first 18 months is an extraordinary change for

many, many people's lives. Importantly, what we have got at the end of

quarter 2 -- so the data is already a little bit old but, hey, this is almost live

data that you are seeing now at very many different layers for the first time

in this sector.

How exciting: 13,500 people approved as eligible for the scheme and, of

those, 11,000 with an active plan. The rest are in that loop of being in the

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consultation. A few of the sites had a bit of a waiting list to get in for

planning now, given the volume of new people coming in, and where that

phasing is at, but we will manage that through.

It is also about a recognition in some of our later stages about the need for

juggling the time lags. We do have the bilaterals to meet but it is also very

important that we spend time understanding and giving families a little bit

more time than we did in the very early days.

So, what are we seeing? 14,000 eligible, 11,000 with a plan; 4 per cent

from culturally and linguistically diverse communities; and 3 per cent from

an Aboriginal and Torres Strait Islander background. Importantly, that field

in our system is very poorly completed at this stage, and that is one of our

priorities where we are trying to make sure we capture that data more

effectively.

$565 million committed in plans for individuals and, importantly, the

satisfaction for our participants stays very high. We are really proud of

that: 95 per cent is not a bad strike rate. We gathered that information in a

variety of ways. It comes through a survey on a regular basis. In some of

our sites that is a direct phone call to a chunk of people who come through

our door in a defined survey week. It is starting to be very consistent and

reliable data.

That's not to say that we don't recognise that there are some teething

problems and it's not all roses out there, but, as a starting point, 18 months

in, creating something brand new, not a bad place to start.

I thought that -- and I will scoot through it fairly quickly -- one of the

advantages of this scheme, as I touched on, is that for the very first time

we have an enormous amount of data around the demographics, the

needs, the demands, the supports, the characteristics of the people that

we are now supporting through the scheme, which will over time identify a

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fantastic opportunity for directions moving forward, understanding the

effectiveness of supports and interventions in addressing individual needs

by lots of different cuts.

All of this data, as I say, is in our actuarial report. If you go on to our

website, the link you can see gives you a quarterly report that we produce

on the sustainability of the scheme and there is a report that is prepared by

the actuary for the Council of Australian Governments on the directions of

the scheme.

I am going to just bore you with a little bit of that data because it is very,

very exciting. Every month the actuary comes to the trial site managers'

meeting and we get to go down into the next level of detail, and we say,

"Can you go away and find this for us?" It's an extraordinary opportunity

for us and we need to use and respect that data.

First off, if we are saying we are on time, what does that look like and does

it look like what we expected it would look like? If you look at the totals

columns, how good are we? Woohoo! 13,683 expected, 13,646 in.

Having said that, growth totals always blur the details of overs and unders

and changes in what we would have expected. So it kind of looks like

what's expected but actually underneath that it is very different to what was

expected.

Importantly, I draw your attention to New South Wales and Victoria, our

two big sites, where we are slightly under what was expected, and that is

boosted by a higher number of new people than were expected in the

bilats. Similarly, in South Australia, Tasmania and ACT, we are well over

what was expected in the bilats but, again, Tasmania has small numbers

and South Australia, with the zero to five in the first year, are really a very

different profile of the individuals that we thought to see. Once we look at

the totals, we can now dig that down under provider, program, age and

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location.

Within budget: we can give ourselves a tick on that. What does within

budget mean? An early measure adopted was the concept of an average

annualised package cost.

If I make one plea -- I have put up this site from my own site to illustrate

what a rubbery calculation that really is. If you look at that, we were

streaming along pretty well for our average annualised package cost until

we hit that great big blip in the middle. If I had been asked to report on my

average annualised package cost at that point in time, many alarm bells

would have started ringing.

Really, it is a concept, a very easy way of analysing the data, but it is so

heavily influenced by the status of our bilats at the time, the phasing

schedules and the types of cohorts and supports that we are bringing in.

Just to illustrate that point, in Victoria's data, in that month we brought in

our shared supported accommodation, every single group house in the

Barwon area. So clearly you had this intensely consistent level of need at

a much higher level than the average annualised package cost, when you

put all of the zero to 65 people in there.

A word of warning: whenever you see the average annualised package

cost, take it with a grain of salt and understand that, over time, when the

actuary devised the measure, to articulate the scheme over time, zero to

65, not by cohort or by defined periods.

Within budget: again, what does that mean? Really interesting to

understand the distribution of costs. Here I have included graphs from

Tasmania and the Victorian trial sites. We need to have an understanding

of the analysis of the proportion of the high and low cost plans because if

we don't get that mix right then we are not going to be able to stay within

the budget over time either.

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Interestingly, these show -- they are terribly tiny but they are in your pack

and you will see them in the actuarial report online. The pale columns talk

about what was expected as that distribution of cost and the dark colours

are the actual cost. You will see that the modelling had expected an

awfully lot more of the plans in the lower band range than we have ended

up.

I think that is pretty consistent across all of our trial sites and I think what

that probably illustrates is the need for us in that first round of

conversations to -- the language is not correct -- right a number of wrongs

from many years around filling a number of urgent gaps.

We are seeing, when we have come in for the changes in plans and in the

updating and the reviewing of plans, that those second plans are typically

coming in at more in the lower end and the reduction of overall costs.

What does within budget mean around the impact on the sector? Again,

as I mentioned, $565 million committed, and this little graph just shows you

what that means by the growth of and the change in the amount of funds

over time that will be available for the sector to respond to the choice that

the Minister highlighted.

Very real change for the opportunities for the sector. Importantly, we have

attracted about 1,300 new providers. Those new providers are so defined

where they have not been previously in receipt of funding for disability

services from a state or Commonwealth government, which is a fabulous

thing to see.

What we are seeing on the ground is a very interesting story about the

evolution of opportunities, of innovation, of a flexible response to the

demand that individuals are raising.

When I talk demand, what does that demand look like? I've simply cut

this -- when you go to the actuarial report, it covers all the sites -- from that

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report. Not surprisingly, perhaps, the largest amounts have been paid for

daily tasks, self-care, communication and access to the community.

What is interesting is that we can break that down at a much granular level

and I am sure the actuary will be putting out reports around that area.

Interestingly, when we look at this, out of the 3,000 plans, how many of our

plans have employment support in New South Wales? Given the focus of

Susan and the Minister on employment issues, it is perhaps a little bit

disappointing, but it really is our spur forward to say this whole scheme

relies on an assumption about supporting and facilitating greater economic

and social participation, and our future conversations with individuals in all

of our sites will start to build on that readiness and transition to be

exploring employment opportunities.

We can cut that data by plans by primary disability. I won't talk very much

about that.

Interestingly, when you look at the leading group now, autism and related

disorders, 28 per cent. It is distorted a little by the fact that South Australia

just has children, and that is clearly a primary -- it doesn't have any other

age groups to influence that. 28 per cent around autism.

If you combine the connected fields around intellectual disability, if you do

ID, other intellectual disability and Downs syndrome, you end up with

around 27 per cent. One of the things the actuary is working on is refining

this list. We are not convinced it is an easy way or the best way to

represent the demographics within the sites and we are working with her to

follow that -- to improve that.

If we know what our primary disabilities are, we can look at the types of

supports that are typically requested and provided for different disability

types. Again, this is a great big long table in the report and you can see

the number of plans that have what types of supports in them by primary

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disability. Of course, that includes all of the other things that we record

against, like support in domestic life, education, employment, tasks,

general task demands, interpersonal relations, learning and knowledge,

mobility and self-care. You can cut that by age, location and postcode,

which is fantastic.

In a nutshell and really quickly, that's kind of what does the data for 18

months look like. If you are interested, particularly around understanding

the evidence and the typical demand, please look at those reports.

Of course, it is not all perfect. As Susan Ryan mentioned, the scheme

provides for a number of pathways for participants to seek to have their

concerns and views heard. We certainly do have a process where we

would attempt to, through conversations, reconcile any concerns or

differences with individuals and adjust their plans on a regular basis.

Interestingly, the legislation never envisaged that. When we were racing

around trying to design the legislation, we had, "Here is your plan and you

must have it reviewed."

In fact, participants need this conversation to be a very dynamic

conversation and they need greater flexibility within their plans to be able

to do what they need to do when they need to do it. It is one of our key

learnings we will talk about shortly.

If the internal review doesn't address the person's concerns adequately,

we absolutely do have access to the Administrative Appeals Tribunal. This

data is where we are sitting at the moment, with 22 reviews in total. I have

to admit, 13, 50 per cent of them, are within my site. I take pride in the fact

that I think ex-Minister Wooldridge mentioned that the Victorian

Government had trained and supported people with disability, that they

had a right to complain and they should have their voice strongly heard.

So we do encourage people, if they are not happy, not just to accept that.

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Importantly, when you look at that data, also, we have changed and we

have adjusted many of the things that people have raised with us. There

are core things that the AAT has stood firm on, and we will talk about that

when we talk about mainstream, but most importantly they have

encouraged us to be flexible and vary our responses to those.

In closing, I really just want to emphasise -- this session, I should say; you

don't get out of us that fast -- in this bit about data, the session, it is just so

essential to have data to reform and to grow and to transform the scheme

as we go.

We have spent an awfully long time collecting data. Our system is a bit

chunky at an operational level. My colleagues over there are nodding. It is

not the best data collection system you've ever seen but it is spitting out

this data, which is way better than we have had for very many years.

It is really important that this data, when it is captured and analysed, we

look for trends, we look for experiences, we look to say, what does the

actual data mean then for our baseline modelling? We will incorporate that

into the baseline modelling and we will go forward. So, bear with us when

we deal with you with a design and a need to collect data.

Sue, I think we were going to talk very quickly around -- we will go to

questions now, but one of the things I thought might be useful is a view

from you, Sue, in Tasmania we have a very defined cohort, 15 to 24 years

old, and by now you must be seeing a few very discernible trends in their

demands and needs.

Sue Ham: That's right, Steph. I guess when people first came into the

scheme, they need to build trust and confidence in the scheme. So we

didn't see a huge difference in terms of the existing supports that people

had prior to coming into the scheme, to what they included in their first

plans.

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However, that story is changing as we start to move through plan reviews,

where we are seeing young people wanting to increasingly make choices

that are different to what they had been accessing previously. They go to

wanting to be able to access the community, not in group settings

necessarily, but on a much more individualised approach.

That could look quite scary in terms of our average annualised package

costs in Tasmania, which sits higher than, if you are looking at comparing

the trial sites without actually then looking at an actual comparison with the

same age cohort in Barwon and Hunter, when you do that, the average

costs are exactly the same.

It is a time where we are making investments in terms of supporting young

people in that critical transition.

Stephanie Gunn: Thank you. Any questions on the data?

Leanne: My name is Leanne from Jesuit Social Services in Victoria. In

relation to the demand chart, I was interested to see in terms of the list of

demands from people that there is nothing specifically there on housing.

In our experience of working with young people with an intellectual

disability and an offending history, housing is one of the key issues that we

have to work with people on. So I was wondering about your view on that.

Stephanie Gunn: Again, that is recorded quite differently in the scheme.

Where you are accessing supported accommodation, it will come up under

one of those categories. But the unmet demand for housing is in fact

recorded off-system.

For Barwon, for example, we run a little register of people who are

interested in different and alternate accommodation. It is a really

challenging space, where the first response from a family is, "I need

supported accommodation."

At the moment that unmet demand is about 74 per cent for shared

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supported accommodation. I will talk a little bit later on the activities that

we have got under way to try to say, "Actually, this scheme gives you

many more opportunities to think differently outside of that" and how we

are building interest and skills to do that.

Leanne: It will be interesting to see the match between aspiration and

hope for those choices and the reality of them.

Stephanie Gunn: A long way to go still.

Jane Tracy: My name is Jane Tracy from Victoria.

My question is also about housing. Could you talk about what shared

supported accommodation choice and control looks like in shared

supported accommodation in your experience in Barwon?

Stephanie Gunn: We took this very seriously because we were able to

look at it from a really strategic way, I suppose, where all of the shared

supported accommodation houses came in at the same time.

I think there were two key principles that we had to respect and build on

those existing relationships in that house and understand that many people

had been in those facilities for a long time, but that didn't necessarily mean

that they were having their choice and desires and ideas respected and

met.

Each individual had an individual planning conversation as per the scheme

design and we then looked at opportunities to build on common interests,

but build on and ensure that there was support in those individual plans

where you wanted to do something fundamentally different.

Very early on, I remember one house, there was a young lady whose goal

was to be able to go out by herself on a Saturday afternoon. You know, it

doesn't sound terribly challenging for most people. But that house had

never supported them to go individually.

After she had her plan, the very next Saturday, even though it hadn't all

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kind of gone through, the very next Saturday, she was actually dressed,

she had her lippy on, she had her handbag, and she went to the house

manager and said, "I need a taxi because I'm going out." The house

manager said, "No, no, no, not quite quiet, we have to work out how to do

it." But it was fabulous to see that, given the opportunity to be

independent, she absolutely embraced that.

Our principle is to understand the whole but support on an individual level.

Jane Tracy: What about choice of staff?

Stephanie Gunn: That will come. That will be something that we need to

work with providers on and how we embrace and allow that increased

flexibility within the shared space. Importantly, we need to think about

what those spaces need to look like, and there are some way more

interesting models emerging that we would like to work with the sector on

as well.

Tegan Whittard: Hi, Tegan Whittard from the Brain Injury Network of

South Australia.

I am wondering if the NDIA is collecting data on disability types or

conditions where plans or access has not been approved?

Stephanie Gunn: Let me get back to you. I'm pretty sure it will be.

If you have completed an access request form and identified your primary

disability on that access request form and then where that has been

deemed not to meet the eligibility requirements, that will still be in our

system. The extent to which that has actually been analysed and collated,

I can't say.

Thank you.

Richard Fay: Hi, Richard Fay, Queensland Lutheran Community Care.

Thanks for sharing the data. Two questions, one relating to the

satisfaction levels regarding the planning process. I just wondered if you

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had any more information or data on how those clients are faring now in

terms of the satisfaction with the actual service provision itself, which to me

will establish that those services are generating the outcome of need.

The other question, I suppose, relates to, you noted 1,300 new providers in

the sector. How are you seeing the quality control around educating those

groups in the workforce and meeting the demand that will accompany that

with an explosion of service providers?

Sue Ham: If I can answer that, the agency is developing an outcomes

framework through the actuary team and we are currently piloting, through

an independent consultancy, working with participants in Hunter, Barwon

and Tasmania, to get feedback from participants through a qualitative

interview, to look at the outcomes that are being achieved by participants

and, through that process, that will give us much richer data in terms of the

journey that participants are making, but it will also go to the question of

are they achieving the goals that they set in their plan and what is the

outcome.

Stephanie Gunn: Just very quickly on the safeguards and standards, the

Minister mentioned that there is now at the moment a discussion paper out

on the structure for safeguards for the scheme going forward. At the

moment each of the bilats has been required to operate within the existing

state government frames and, until such time as that national framework is

agreed, that will continue.

Can I suggest -- we have an awful lot more to talk to you about -- and we

might hold off on more data questions. If you don't have any questions on

the other stuff, we can come back to data. Is that all right?

Georgina Lyell: Hi, Georgina Lyell, Department of Education and Training

in Victoria.

Stephanie Gunn: Georgina, we were just going to hold off on any more

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questions on data.

Georgina Lyell: Sorry, it is not on data, Steph. Can I ask one brief

question which I thought might be relevant for the room. I did hear you, I'm

just being a bit cheeky.

I have two questions, and I'm really interested to hear from both of you on

this. Given where you have been sitting in the last year -- and, obviously,

I have had quite a lot to do with you, Steph, over the last 18 months -- what

do you think have been the ingredients for success in managing a

transition that has been this challenging and this complex on the ground?

The other question I have is around some of the improvements that have

been put in place to stop the scheme from turning into a bureaucratic

juggernaut for families.

I am particularly interested, I would say, in the experience of the families of

young children with a disability in developmental delay, how the scheme is

looking to streamline and improve those processes for entry into the

scheme.

Stephanie Gunn: I will answer very quickly, then we will probably touch on

a couple of those elements as we go through our learnings from the trial,

about where we do want to make improvements and are changing our

processes.

The secret to getting this scheme to work on the ground, I have been very

fortunate to work within a very defined geographical boundary, with

fabulously committed, capable stakeholders around me, like Georgina,

commitment from the state government, from providers, from the

community to embrace the principles of the scheme.

As an agency, what that has required is an incredible level of flexibility,

responsiveness and willingness to listen and to be able to acknowledge

where we haven't got things right and move forward on improving things

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gradually.

That takes us to the second component of the question, where there has

been an awful lot of things that if we hadn't had more time we would have

done very differently from day 1. Unfortunately, the people who have

come into the scheme have been a bit of the guinea pigs for us on some of

those processes. Certainly issues around the challenges for plan

implementation and self-management have been not designed in a

streamlined way and we are working very heavily on those things.

You will see some of those other things that we are working to improve as

we go forward, but a willingness to listen, and an understanding from that

community that you work in that the NDIS is but one part of the solution

and it requires everyone to work in unison to get this thing to work.

We might push on.

Sue Ham: I guess this slide reinforces the point that Steph is making in

terms of the absolute need for the agency to be as flexible as possible.

The slide is attempting to illustrate that there are different trajectories for

participants coming into the scheme. We know that of the more than

13,000 people in the scheme, we have started to address particular

supports that have been typically underfunded in previous systems. They

go to continence aids, equipment, personal supports and community

access. But we know that that journey for participants is different.

We have some participants that are very clear about the goals for

themselves in their lives. They have got the support from families and

from carers that allow them to have that conversation with the planner, and

can get in place a plan that will support them to achieve those goals over

time.

But we do have other people who are at different points in their lives, who,

with the guidance of staff, with the assistance of local area coordinators,

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with the assistance of their families and carers, have been able to

articulate their goals and start along that journey. But they may be starting

at a different level from some of the people I talk about just now.

For the majority -- and this is what I said in Tasmania -- that have come

into the scheme through their initial trials, they weren't necessarily ready to

trust the new scheme. So that the majority, it's going to take some time for

us to build those participants taking up the power and the choice to

actually make a difference in their lives.

We have got to acknowledge that with this change process we have got to

see that we have all moved through that journey, so that we have got the

ending of the previous system, which was familiar to people -- it wasn't

necessarily delivering what people wanted but it was still familiar and it

was comfortable -- moving through to a transition phase, where we had all

the clunkiness that Steph talked about, we had new sometimes and

processes that didn't work particularly well. So we had angst and fear from

people coming into the scheme.

We are now beginning to achieve that, I guess, transition to the new; we

are starting to see the energy and the freedom that people have now in

terms of having better choices in their daily lives.

To assist participants and families, we learned that we need to put in place

preplanning opportunities, peer supports to allow people to get ready for

those planning conversations. So that's one of the learnings from the trial

sites that we need to take forward as we move towards full scheme.

In terms of talking about personal goals, regardless of the pace, the

flexibility of the NDIS allows participants to achieve remarkable progress

against their goals. Clear goal setting and conversations with planners is

fundamental to the scheme. Our approach to setting goals is important.

Clearly we are able to categorise and look at the data correction and the

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scheme analysis that Steph has just taken us through, but along with that

we have got to recognise the variability, the uniqueness and the individual

nature of those goals. So it is still a little challenging for us to look at the

personal goal outcomes, which is why we have developed the outcomes

framework to better look at and measure those outcomes as we proceed

along.

We want to empower participants to seek and plan for their future and to

assist others in their lives to help them do this well. We know that doesn't

always go smoothly but we want you to push the boundaries. You have

heard Steph talk about if people aren't happy, we want people to request a

review by the agency, take it to their AAT, if you continue to be unhappy

with those decisions. Only through that process will we also learn to

actually make the changes that we need to.

We have further explored other opportunities to support participants and

their families, and so we now have in place disability support organisations

to provide another method of supporting people as they come into the

scheme.

We have got around 20 grassroots community organisations who have

been funded to deliver up to 20 groups, the development of 20 groups, in

trial sites, which will work with people with disability, their families and

carers, to look at the opportunities that the scheme presents and to allow

that opportunity for cross-fertilisation, for sharing of ideas, sharing of things

that haven't worked, but also to then explore what are the opportunities

and what are the opportunities in these local communities.

I have a few slides here that are seeking to give some visual feel for the

participants' feedback that we have seen since the commencement of the

trial.

In Tasmania we developed a Tasmanian word cloud from 100 participants'

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statements, and we used that recently at a national disability services

conference in Tasmania which was aimed at frontline and middle

managers. Those statements really emphasised the change that the NDIS

means to participants. The key words that were coming up were change,

community, learning, employment capacity.

The next slide really gives you a sense of what is possible. I wanted to

read a few more out, in addition to what's on the slide, just to give you a

sense of where young people are in that journey in Tasmania:

"As a result of the NDIS my mobility has increased, falls reduced, due to

an intensive physiotherapy program being developed."

Simple things but really important.

"As a result of the NDIS, I now have a support person to assist me to learn

new skills and enhance my independence, so that I can move out of home

in the future with my friends."

The last one I'll read out:

"As a result of the NDIS, I now have equipment required to shower safely,

and so I don't need my mum in the bathroom with me."

Powerful stories.

These next couple of slides are slides that emphasise the goals that can

be achieved, whether they are big or small goals or really simple ones.

We have heard sceptics of the scheme, saying, "I don't need to plan my

life, why should people with disability have to do this?"

Firstly, we would say it is the core element of an insurance scheme. The

scheme is not a welfare or entitlement system, the scheme is designed to

provide maximum opportunity for people with disability to live a full and rich

life.

To reflect these, these are silhouettes that were developed by one of the

staff in the Barwon office, to remind her of the achievements that

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individuals were expressing when they were coming back in to see her.

Other staff have adapted these, and are now capturing the one thing that

lights up a person's face when they are talking about the changes in their

plan reviews.

Plan reviews are an essential part of the scheme because we need to

support people to readily adjust their goals, and obviously we need to

understand that journey for individuals, so that we can start to understand

the outcomes that have been achieved.

In summary, I guess this slide is attempting to show the journey in the

nature and the scale of the support that the agency is providing.

In the first space we talk about the transitional pressure of the bilateral

numbers that needed to be balanced with being able to spend time with

people to listen to what their goals and aspirations were. We had the

clunkiness of all the systems and all of the new processes that we didn't

have quite enough time to design.

We then moved into phase 2, where it's really a consolidation period,

where we are seeing increased skills and interests in scoping and

connecting and building partnerships, right across the areas of the

community that need to be involved in this reform process. We are starting

to move into that transformation, where we are starting to see the

confidence that people are building in their participation in their plan that

will allow them to move forward to a fuller life.

It is just the beginning but we need to learn and continue to build on those

lessons. Whether they are lessons that tell us, that didn't work, we NDIA

to try something else, or indeed where we have seen success, we need to

be able to replicate that.

So, Steph, you've got most of your participants into the scheme. Are there

any trends that are emerging in terms of the reviews that you would have

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been doing over the last nine months?

Stephanie Gunn: I think it's been a really exciting period for us to revisit

that relationship with individuals. Many times, as part of the phasing, it

was an incredibly rushed and busy time for people and we were in that

typical concerns around change.

I would reiterate the little diagram, going backwards for a minute, around

how people's pathways through each of those stages of their relationship

with us is at such a very different timetable. Some people have been out

there exploring and some of those goals have been really big, "I'm going to

go back to work because of the support that I can now get through my

personal care." Others, you would have seen the little girl who can now

ride her bike or whose mum has been able to go back to work.

But the review phase for us has started to see people actually embracing

and exploring the opportunities that the scheme does give us, around

choice, around flexible, and around innovation.

One other lesson around the reviews is that there are some things that the

agency is still a little bit stuck on and that we are working very hard to

explore the degree to which we can still be flexible and responsive to an

individual and keeping in mind those insurance principles and cost

management, I suppose; and where that butts up around people really

pushing the boundaries and being flexible and saying, "But I would like to

exercise my choice in this area," for an agency so very young, we actually

find ourselves running to keep up with some of that thinking, so we need to

get better at that as well as we go.

Any questions?

Jane Tracy: Jane Tracy from the Centre for Mental Development Disability

Health.

I am really interested in the health/disability interface and your experiences

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with people who need to move in and out of the health system and the way

in which that has looked to you, both around primary health needs and

community health and inpatient hospital experiences.

Stephanie Gunn: That question takes us very much into the space about

our relationships with mainstream and our understanding and getting that

clarity around the roles and responsibilities of each partner, and sharing

the goals and understanding the needs of that individual.

We work very intensely, I suppose, on the ground with all of the various

players: the rehab facilities -- for my example, the Barwon Medicare local --

to build an awareness of the scheme and the fact that people with disability

will be seeking to explore lots of different opportunities, and how the

mainstream can better support those opportunities.

We have a couple of programs running with the health sector in Barwon.

But that pathway from ongoing in and out of inpatients is something that

we are trying to work on to make it smoother, so that the exchange of

information about a person's needs, and being really clear about, just

because the person has an intellectual disability, caring for them when

they have got a broken leg is not the scheme's responsibility. That

remains the clinical mainstream health system's responsibility. I think that

will be something that we will work on, on an ongoing basis.

John Chesterman: John Chesterman from the Office of the Public

Advocate in Victoria.

Stephanie, I have had this conversation with you and your staff and I am

interested in any comments you would like to add, and perhaps Sue's take

on this, I would be interested in, as well.

We know that a significant percentage of the NDIS participants in the trial

sites are people with significant cognitive impairments. Could you talk a

little about the steps that are being taken to support people with cognitive

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impairment to make their own NDIS-related decisions and also could you

perhaps talk about the use that has been made of the substitute

decision-making processes available, by which I mean the nominee

appointments? I know the uptake of nominees has been very low in

Victoria, but I would be interested in Sue's comments on that as well.

Stephanie Gunn: I think, again, if we put this into the learnings around the

scheme, the level of the support and the nature of the support in that whole

space of supported decision making I don't think was well structured or

well documented. Certainly our staff weren't kitted with a toolkit,

I suppose, to best support people in that space.

We have worked very closely with OPA and we are very grateful for that

assistance. I think that whole -- there needs to be an appropriate cascade

of level of support, which reflects the risks and the needs of the individual

at that point in time.

We are working very closely with the advocate groups in the Barwon area.

We work very closely with where legal aid comes in to assist that. We are

very grateful for the OPA's role as an advocate and as a person who can

assist in the planning process for some of our participants.

But to be able to adequately balance the need for this scheme to respect

and build and strengthen the voice of the individual with the knowledge

and experience and the aspirations, be they very, very small or very, very

large, of their families and carers, is an ongoing tension and something

that I think that if we get that right, where we are absolutely confident that

at all times the voice of the person is clear and is able to be heard, but we

are respecting all other players in that role, then that's what this scheme

will drive as a fundamental legacy.

The space around nominees, yes, it is a really interesting component of

our legislation. We had always assumed where these, I suppose, good

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souls, charitable souls, would pop up and be prepared to support people

with disability, where that person had nobody else. At the moment that's a

big chunk of work that the Barwon trial site has been thinking about kicking

off, around: how do you encourage people to stand up? They might be a

parent of another child with disability who would be prepared to act on

behalf of and in the best interests of that person who might not be able to

articulate their needs.

There is a lot of work to be done in the nominees space; make it stronger,

make it more disciplined, and to make it more responsive to the needs of

those with limited communication.

Sue Ham: I will go to Tasmania in a moment, but I would add that I think

putting disability support organisations in place and the development of

those local community groups should, I think, help to contribute to building

that capacity for the community and for individual participants.

In Tasmania, I guess the comments that I would make are that we too

work very closely with the advocacy groups. I know that when planners

have seen participants come in to have planning conversations, that may

have parents with them or carers with them or just support workers from

providers, that they will often make a suggestion to involve an advocate to

give voice to that participant where they see that is appropriate. That has

been very positively received by advocacy groups across Tasmania.

I think that, again, we haven't had a particularly high take-up of formal

nominees at this point in time.

It also goes to the question of the resources and tools that we have to

support people to communicate with the agency. Assistive technology,

different tools that will allow different ways of communicating is important

and the agency is looking to build those resources now, which will

strengthen the voice of participants as we go forward.

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Question: Hi, my name is Mark Sonegar(?), I work for a disability service

in south-west Victoria with a focus on acquired brain injury.

I know there is a presentation tomorrow about service providers preparing

for the NDIS, and I' aware that south-west Victoria is due to have the NDIS

later this year. I was just interested in your opinion, perhaps both of you,

on what service providers can do in preparation for that.

At the moment, I guess from my perspective, we are pretty much in the

dark about what we can do, how we can prepare for it, so I am interested

in what we can do perhaps.

Stephanie Gunn: It might sound a trite response, but to be absolutely

confident that you understand what the people who you are currently

providing services to, what it is that they want. Do you truly have the

capacity to be flexible and responsive to their choice?

The Minister used a very interesting phrase "services follow choice". From

our experiences in Barwon, we have had a very, very mixed response in

the ability to grab and respond rapidly. Some of that goes to all of that

core governance frame that NDIS has provided a lot of training and

information to providers about, around the structure of your management

team, your skills that you need, the IT; you know, simple things like being

able to understand the cost of the service that you provide on an

individualised basis. Some providers are still not able to do that. That will

be a core skill capability or foundation that you will need to interact

successfully with the scheme. It gives you great insight then to be able to

articulate in your own mind what is it that you are offering. What is your

target group? What is the commitment that you are making in your

business to what group of people in the community?

Not many people can be everything to everybody. I think that there is --

funding has kind of pushed a lot of people to be that.

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This is a fantastic opportunity to have a very detailed insight into where

you want your business to go, who you want to be known to be supporting

and what is it that you are going to be offering. That offering is to be

informed by the choice of the individual.

NDIS has a whole toolkit about getting ready for the scheme, around all of

that management and business training, I suppose.

Sue Ham: I guess the point of looking at some of the data from the

actuaries provides a very rich source of information in terms of what

services people are including in their plan, so that you get a sense of some

of the shifts that will occur over time, and you can see that coming out

through the quarterly reports that come from the scheme. It is really

important that you have a look at those reports.

Go and visit other trial sites, look at the journey that providers are making

in those other trial sites. There's quite a rich source of success stories that

include changes that providers are making, both on our website but

through Facebook as well.

Stephanie Gunn: Another quick question, one of the frustrations of the

providers, which hopefully will be fixed by the time it gets to you, has been

our catalogue, where there has been an incredibly complex way of

claiming, line by line for different hours of the different days of the different

services. We are looking to streamline the way the catalogue of supports,

and therefore the way you claim against a person's plan, that should make

life a lot easier.

I will leave it there. It will make it a lot easier than some of the pain that

certainly providers from existing trial sites have had to adjust to.

Claire McKellar: Hello, Claire McKellar from the Mental Health

Commission in Western Australia.

From my perspective, one of the big issues we have had is engaging with

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individuals with psychosocial disability, particularly when they are living in

psychiatric hostels and when they are not engaging with services already.

I wonder if you could share your experiences of engaging with these

individuals, and have you had any specific projects or initiatives targeting

that group.

Stephanie Gunn: We will talk very briefly around the work we are doing to

improve our engagement with people with psychosocial disability. But

quickly, as an example of the recognition of that, in Barwon we allocated

an individual staff member to be, I suppose, a little bit of a bridge. If a

person comes into us and is found not eligible, the worst case is that they

would then be left with nothing or having plucked up the courage to come

and see us but not previously engaged with clinical services or not

currently engaging with those services, our individual staff member now is

working very intensely with the ineligible people, for want of a better

language, and building those pathways back into clinical services,

community mental health services and doing the things that a local area

coordinator will do around connecting them to community supports.

It's really important around understanding for the scheme as a whole, what

programs that have previously been funded to support people from that

cohort, that remain, that get involved in the NDIS, versus those that need

to remain in what is now being called the information linkage and capacity

building component of our community, so the community mental health

services.

There is work under way with the Mental Health Council and the Mental

Health Sector Reference Group that Eddy Bartnic from WA is heading up

for us, around better understanding the language that we use and relating

that back to the much tried and proven methodologies around recovery,

that are well established in the psychosocial disability group.

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That goes to things like the language we use, how we describe that. It

also goes to the support that we give people when they are coming in and

the vulnerable groups who are not wishing to come independently, what is

that group? There is a project that we are trying to get up and run to look

at what is our responsibility for that engagement with the vulnerable group,

not yet connected to us.

Sue Ham: In Tasmania, I guess we believe that we have got around the

number of people with psychosocial disability who have come into the

scheme as what we expected, around about.

We have worked very hard at working arrangements with state mental

health services and the community mental health sector to build an

understanding of each other's space and to make sure that we have that

point of contact so that we can make sure that when people are seeking to

access the scheme, that we will be working very closely to make sure that

we had a sufficient understanding of that person's particular needs and to

understand what the impact, the financial impact, was for them.

I have to say that my early sort of view of what's happening in the Barkly

trial site for people with psychosocial issues is more challenging, so we are

working very closely now with the Department of Social Services and with

the personal helpers and mentors provider in the Northern Territory, to

again revisit the numbers of people that have attempted to access the

scheme and been found to be ineligible, just to make sure that those

decisions are right or, if they are not right, to revisit them.

Stephanie Gunn: I know there are a couple of other questions but I think

some of the questions may be answered by our next chunk of

conversation. If not, we will come back again at the end of that.

We want to talk now, having talked about what the data shows us and the

experiences around the positives and the outcomes and the journeys that

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our participants and their families and carers have been on, we wanted to

say, what have we observed? What do we think we need to do better?

And where does that take us going forward for preparation for full scheme?

I am very conscious that we will finish at 12.20, so there are two big

chunks and then a small chunk and the full scheme. We will do this in

about 30 minutes as a session, so bear with us.

I want to just reiterate the point that Georgina and I were making around

the fundamental need for us to work together to create the solutions to

make this scheme work for everyone. This is a significant change and it is

about the boundaries of things that have been in place for a very long time.

We now absolutely acknowledge that there are things that the scheme can

do better and that there is an awful lot of improvement over time that will

be needed. In that, at the highest level of something that we need to think

about is that planning has been rushed for some people, it has been too

slow for others.

Our staff haven't necessarily been consistent in the way in which we have

understood, applied, interpreted the guidelines and policies. We have big

gaps in the agency on some of our policies, and we are still evolving that

around what's the best way for the scheme to respond to some of these

requests that people are putting up to us.

There's stuff like we're not very good in the Barwon area -- I'm sure Sue is

perfect at it -- at returning emails and phone calls, really simple basic

things that we can do better. Importantly, what that's identified for us is

that plan implementation, now that we have got everybody through,

making sure that we can optimise the use of the plans.

But it will require change at very many levels if we are to achieve the vision

of the Productivity Commission, of the government and all of the people

with disability and their families, who fought to get this scheme under way,

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and it will take way more than just the work of the agency.

The areas I have identified in those dot points are some of the things we

are working on and that we are very conscious that need to be refined and

smoothed as we move forward. Really it just highlights that point, that this

scheme is an element of the national disability strategy and that one of the

strengths of the scheme being so strong and well supported is that we are

now likely to be able to make some really good movement forward in that.

Sue Ham: To this end, the board has set some very simple and clear

strategic priorities which will steer the agency through this next big

ramp-up of transformation as we work towards getting ready for full

scheme.

They are the four key goals that the agency is working on: scheme

sustainability, upholding the United Nations convention, implementing an

insurance model, and maintaining support and confidence in the National

Disability Insurance Scheme.

I guess critical to the success of the scheme is about building partnerships.

It is fundamental. We have heard the Minister's speech, we heard Susan

talk about the importance of collaboration and partnership. This is required

in terms of being able to achieve the systemic change and the level of that

change in order to deliver on this scheme and in order to make sure that

we have got strong partnerships across mainstream, in the not for profit

sector, in terms of providers, with the agency; they are absolutely crucial.

The scheme recognises that the actual scheme is but one part of the

national disability strategy. We heard the Minister talk about that as well.

The commitment is much longer and much more wide reaching than just

going to the -- that goes to respecting the inherent right of the individual

and the person with disability to become an accepted and valued member

of the community.

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We have got a comprehensive feedback management system which

captures and allows us to analyse that feedback. We are making use of

that feedback to look at the systemic issues that are coming up, like not

answering phone calls as well as we should or returning emails, so that we

as an agency can start to respond to and address those priority areas that

we are getting feedback about.

The agency has got a range of other things that we are doing currently,

right at this moment, to get further feedback. We have got cultural

mapping occurring, where we have got consultants going across trial sites,

working with our staff, listening to our staff, listening to participants and

listening to providers and families, to get feedback, so our culture matches

what we are doing on a daily basis and our interaction with the community

and with individuals.

Stephanie Gunn: What I want to do now is walk you through some of the

different areas in which we are trying to build those partnerships.

If we look specifically at providers, as I mentioned, 1,300 new providers, a

total of 1,600 registered providers across all our trial sites. As an

observation of our relationships with those providers in that very early

stage, and a lot of my state government colleagues will attest to, the data

that we had on existing clients to aid that initial transition was very variable.

Some of it was fabulous, some of it was well informed, others was very old

and duplication and the like. There is a lot of work now under way with the

state governments and the Commonwealth government as part of moving

towards full scheme to look at how we provide much better data as we

come in.

Importantly, I heard the concern raised by the Queensland representative

around price, and that will remain an area of ongoing conversations with

NDIS. It is important to note, though, that it was reviewed after the first 12

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months of operation. That review involved an awful lot of very detailed

experts in the accounting sector to bring to bear what were the true costs

of operating in the scheme. The prices were adjusted as a result of that

review in a number of areas -- I think probably in all of the fields.

I am very conscious that there remains concern around the price in two

key areas around the one-on-one support and the funding for community

access. That has been complicated by the complexity of our catalogue,

which will be simplified. But one of the challenges there is that the

government remains very clear -- and the agency with the advice from the

partners that were brought into that process -- that the price that we have

currently available is an efficient price, it has been set at a price that will

recognise that, as more efficiencies grow, that price will change over time

as well.

To understand that price structure, there is detail on the website. If you

are interested in engaging with the scheme over time, I would encourage

you to be very, very clear about the basis of that cost structure moving

forward. It is really fundamental to understanding your positioning within

the scheme.

I think it is really important to acknowledge that we have worked very hard

to understand the concerns of providers and to explain the scheme as it

was evolving. We have regular forums, regular communication in all sites.

Now, in those sites where we have got through the major phasing push,

we are now able to evolve into gathering input and ideas about the

strategic directions for the scheme.

Importantly, there are a dozen or so really key fundamental steps that we

are working with providers on. This is about the nature of the supports that

are available and the way in which those supports are understood. We are

very keen to build a stronger capability in the area of complex case

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coordination, care coordination. We need to release the data on demand.

I have presented that to you in this really generic structured way.

What basic economics 101 will tell you is that investment will follow the

demand and we need to be able to present that demand data in a way that

responds to an industry structure and an organisational structure.

We are working with providers very much on capturing outcomes. Sue

said there is a pilot, and again in Barwon and in the other sites we have

had many conversations around how do we meld that future outcomes

measurement to what you are currently capturing, what you currently need

to offer a fabulous service to an individual and build on what you have

already done.

I think really very importantly around the innovation and flexibility in

response to employment ideas, you will see sometimes that the level of

granularity reported, we do under things called "Other innovative supports"

and this is where there is a need for us to be able to say, "That's a

fabulous idea and we are really happy to support that," whereas the

traditional structure of a line by line item hasn't lent itself to that very well.

We are very keen to embrace and work with you as providers around

thinking outside those squares. We have got some fabulous examples

around evolution of pathways of employment from volunteering, from

one-on-one support in a step-up way to a sustainable part-time or full-time

employment for people of very many different ages and of very many

different disability backgrounds.

All things are possible, but there is a lot of work to be done in that space.

I think the other thing, from a lesson learned, that we will need to be much

clearer on when we roll out full scheme is the role of a provider in the

planning process. For some people, the support provider is the only

person in their life and we absolutely acknowledge that that support

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worker, support provider, may well know very many things but they might

not have ever asked what it is that you want.

Sue's point, we are encouraging people and the opportunities for

independent conversations and lots of -- I can see you laughing, but I have

sat in conversations and I will swear on a stack of bibles. I absolutely

accept there are brilliant, absolutely innovative fantastic providers, and this

scheme will only survive through people like that; but there are people who

could do better.

Working with providers remains a big chunk and a very effective

meaningful partnership. Working with families goes to the point that John

raised around where a person might not necessarily have the ability to

articulate their goals themselves.

The scheme was born from the voice of people with disability and their

families. It will survive only on the fact that we can maintain the strength of

that voice. The strengthening of those voices and incorporating their views

and learnings into every one and every single one of our processes, to

make sure that it is doing what the people of the target audience for this

scheme actually need it to do.

We have heard and seen in that space that the priority is very much

around support for plan implementation. A key strategy is the simplifying

of the catalogue, so it will be much easier, a lot less burdensome and a lot

less bureaucratic to engage with the funding supports that you have had.

But, most importantly, it is actually about connecting families to other

broader supports that are available in the community and strengthening

the community's embrace of those principles and ideas as well.

As Sue said, DSOs will be a key component for us in that space.

Importantly, again, the open communication and ability to give feedback:

sometimes I know that our staff may not have embraced your feedback as

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willingly as we need to, and we will continue to work on that.

Importantly, we are continuing to work with mainstream. I have put this

quote up from an AAT decision from June 2014 because it captures for me

the really important part of the scheme and what we have been talking

about in a lot of detail.

In a nutshell, just because the mainstream is not funding a support that

should be funded by the health scheme, health or any other system,

doesn't mean the NDIS should be funding it.

One of our challenges at a local level is to build a very clear understanding

of the boundaries, of the roles and responsibilities of how we interface, of

how we make sure that the bits that are not black and not white, you and

me, but all the bits in grey, how we make sure that we can work

collaboratively to support the person through that journey.

We continue to put a lot of work, both at the trial site level and at the state

government, national office level, Commonwealth level, around defining,

capturing and improving those spaces.

Sue, it might be nice for you to give the example where you have worked

very closely with a number of mainstream agencies to get a really good

collaborative outcome.

Sue Ham: Obviously, with the focus in Tasmania of the cohort group 15 to

24 -- and we now have some 25 and 26-year-olds in the scheme, because

they stay in the scheme once they have transitioned in -- is to look at

building opportunities to participate economically.

We have a couple of projects under way in Tasmania. As with all trials,

different trial sites are trialling different things, so that the agency is

learning, and that can feed into the building of what works as we move

towards full scheme.

We have a couple of projects in Tasmania. One is looking at that interface

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or transition for young people from school and that pathway into

employment. Also a small project which is very much in its infancy, which

we have called Into Work.

I will talk about those briefly. We heard from participants, from family

members and from education that the transition from school to

employment is not a smooth pathway. We brought together key people

that are in this space -- the schools, the Department of Education, the

Catholic schools, disability, employment, service providers, disability,

TAFE people -- to come to the table to look at how we can design a

smoother transition for young people in that space.

From that work we developed a best practice guide and an integrated

pathway that we are currently utilising in the trial and in the process of

doing some early evaluation work, to look at how the integrated planning is

going to make a difference for that transition.

It is very much driven by the transition education teachers but the NDIS

planners go and be a part of those conversations in schools. They often

involve, obviously, family and carers, but will also include people or

providers that are also going to contribute to that pathway, whether that

young person is thinking first about going on to further education or training

or whether they want to move straight into some sort of employment

option. Those people are a part of that conversation, so we can get an

alignment of goals across the very different and many plans that can be in

a young person's life at that particular point.

We expect that we will see the first tranche of evidence of how that is

working towards the middle of the year. We know that is going to take time

to build and be successful. We need to refine how we interact with

teachers in schools, to improve that process, but nevertheless that project

is under way and we would hope that would influence that transition

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process for the scheme nationally going forward.

I guess the second one I just want to talk about briefly is what we have

called Into Work. It is a very small project, looking at employment support

for people with intellectual disability. We have set ourselves a very

challenging task. We are looking at that project in the north-west of

Tasmania, where youth unemployment is one of the highest in the country.

We know that around 26 per cent of young people with disability who are

accessing employment assistance get employment, but of that number

only around 25 per cent stay in that job for more than 26 weeks.

So this project is about providing intensive pre-employment support for up

to 18 months, prior to considering taking up the support through a disability

employment service employer. It is a project that is modelled on a

program called Job Support Transition to Work in New South Wales. Their

evidence is showing the employment outcome rate of 73 per cent,

compared to similar providers in New South Wales. So we really want to

be able to also draw on successes that are already out there as we build

the scheme and look at particular strategies that we would want to see

going forward in the scheme.

Stephanie Gunn: Again, using that principle of the model, we are working

with the Department of Education in Barwon to look at the concept of

better integrating the support for the child in the school setting as well.

I might skip over the next one, given our timing.

Back to you, Sue, around working in remote communities.

Sue Ham: Thus far we have summarised the journey in terms of the

nature and scale of the support for most of the trial sites. But for remote

and rural communities the agency needs to be more flexible and more

adaptable for the journey of those different circumstances in local

communities.

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We have got to recognise that whilst there are different rural and

metropolitan communities across the country, it is very important that we

are able to recognise and work with communities in those more remote

settings. We need to understand and respond to the different geographies

of community and different population characteristics, the socio-economic

status of those communities and the infrastructure or lack of infrastructure

and health status of those communities.

As a consequence, we are recognising that no one way of rolling out the

NDIS is going to work right across the country. So the trials in the Barkly

trial site in the Northern Territory and the trial site currently under way in

South Australia, which takes us into working in remote communities,

including the APY Lands, is very important for the agency in terms of

drawing on the lessons as we move to roll this program out across the

country.

I guess I would emphasise that we need to engage very deeply with those

communities and with traditional owners, where those populations are

predominantly Aboriginal or Torres Strait Islander, and only then follow the

engagement with individuals and go along that journey with individuals

coming into the scheme and the communities that they are living in.

We very recently had Bruce Bonyhady up to the Barkly trial site a couple of

weeks ago. He spent a week in the trial site, listening to traditional

owners, listening to the community, listening to providers in the Barkly trial

site, to understand the challenges that the scheme is facing in

implementation up there.

We held a meeting in a remote community, Ali Curung, and as a result of

that meeting with Bruce and listening to the lack of infrastructure in that

community and the stories that people told, as a result of that, that

community decided to establish an NDIS disability advisory group, if you

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like, to provide advice, to work with the agency as we look to implement

the NDIS in Ali Curung. These are the ways that we need to work in

remote communities.

I think it is fair to say that in the early days of the trial in the Northern

Territory, for a whole range of circumstances, we haven't necessarily done

that. We have had the pressure of the bilateral targets which was faced by

the first four trial sites. That same challenge has come in the Northern

Territory. But I guess the key lesson is that we need to work with people,

work with communities first, to understand and engage, so that they

understand what the scheme means, before we can move on and work

with individuals.

I guess the agency has learnt that lesson in Barkly and we are going to

use art, which is a very important part of the culture in Barkly, to have

those conversations with individuals, with communities, to understand what

their needs are in those communities and to use that as an opportunity to

have a conversation in explaining what the NDIS means, working with

interpreters and working with our local advisory group which has been

established to bring together what I call a broad coalition of advisers,

including people in the scheme, key stakeholders from mainstream and

also providers in that community. It is a very small community so it is

better to be inclusive rather than go for a set number of people in that

group. That will be a very important group for the agency as we go

forward.

I guess I want to keep re-emphasising the point that it is very important

that we build trust and connection. Some of our practical strategies --

I have talked about the art project, I have talked about the local advisory

group -- we need to continue those activities and work with providers to

use other mechanisms to build our relationships and build our credibility in

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those communities before we can really start to deliver on individualised

support for people.

Just to talk very briefly about South Australia, the trial in South Australia is

covering a younger cohort and has been in place since July 2013. Very

much the work of the agency in remote locations has drawn on the advice

from Aboriginal controlled organisations and community leaders. We have

a report by the NPY Women's Council which has informed how the agency

is implementing the trial in South Australia and in the APY Lands.

We have looked at opportunities to build, to champion, to look to

community leaders, to assist with information and engagement. We have

looked at the timing that works for communities and taken that into account

as we have started to work with individuals in those communities.

We are also working with other important people in those communities, in

terms of organisations that have been there for a long time. We have got

the First Peoples Disability Network, and you will hear from Damian a little

bit later. They are the disability support organisation who will be working in

the Barkly trial site, but also in selected locations in South Australia.

Those things are very important in terms of providing those opportunities to

let participants work together on preparing for those consultations that we

talked about earlier.

I think it is fair to say in Barkly and in APY Lands we are going slow, but

that's important in terms of working with those communities sensitively but

also making sure that we get it right. We have got to learn those lessons

very carefully if we are going to make this scheme work in very remote

communities in Australia.

Stephanie Gunn: At a similar level of discipline we are really focusing now

also on how we make sure that the scheme works for individuals from

culturally and linguistically diverse groups.

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I won't go through this in detail, but suffice to say we have had a lot of input

lately and we are in the process of putting together a service delivery

response and strategy to make sure that we are ensuring equity of access

and the responsiveness of the service offering to those groups.

Importantly, that strategy will have three major areas: ensuring that we can

build the diversity of the workforce, certainly for our own agency but across

the sector as a whole, so that the workforce reflects the participants they

are working with; building local connections, so ensuring that our staff at

the local level have the skills and the knowledge and the connecting to the

bodies that are the natural communities and support groups for individuals.

The group in Barwon, for example, Diversitat, has been a fantastic insight

for knowledge and understanding for us to rely on.

Importantly, also, the third element is around what are the range of

engagement strategies and tools, including our website, that we can

improve to better support understanding by people from those

backgrounds.

I will touch very quickly now on housing. I won't go to the housing

conversation around policy and design at the highest level, but what

I would like to talk to you about is the challenge that we now have for

understanding, tracking, mapping the unmet need in an environment

where there is no vacancy coordination, there is no centralised

prioritisation, and it is the voice of the person who will need to push and

articulate their housing needs.

At a local level we are working on some short-term and medium-term

strategies around building capabilities and resources for families and

individuals to rely on, and we have had a couple of housing forums and a

couple of group information sessions, for example, in the Barwon.

In the short term we really need to be able to understand how we are

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capturing that demand and publishing it, again. So, just like any other

support people need, can we get that information out? Because the

service response will come.

How do we connect the person? If we know the person wants new

housing, how do we make sure they can be connected to and the

providers can be connected? Need to ensure that we have got appropriate

safeguards in those arrangements.

In the medium term, though, there is a whole focus around the capabilities

for independent living, and you will see that that will be through, again,

group and individual support. Importantly, that needs to also pick up the

needs for the family and how do we support and engage and strengthen

the work that individual families are looking for for individual solutions. We

are happy to talk about that in a little bit more detail.

I am conscious of our time so I'll skip over the complex needs. There is an

awful lot of work that we are doing, trying to make sure -- picking up the

point that John and several other people have made -- this scheme must

be able to respect and build on the voice of the person with disability. That

is very challenging when that person has complex needs or their

circumstances are complex.

How do we make sure that the scheme adequately allows an individualised

approach to developing the very best support frame and regime for those

individuals?

Importantly, a clear focus on the quality of life, on the measures against

agreed outcomes and opportunities for those individuals is really essential

in that space. Some very exciting work is happening in all of our sites,

which is kind of a session all by itself.

Around mental health, I mentioned some of the work we have been doing

with the mental health reference group, that Eddy Bartnic, previously the

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Mental Health Commissioner from WA, is now heading up.

It is really important to say that we have 1,000 people with primary and/or

secondary conditions of psychiatric or psychosocial needs. That is about

where the actuary had predicted at this point in time or expected at this

point in time.

Importantly, we have heard very much the need to connect the language

that the scheme uses to the language that was previously well established

and evidenced in the mental health sector.

Through the Mental Health Reference Group we are really improving and

changing our practice for engagement, timeliness, who we talk with, when

we talk with them, how we engage and how we support, what type of

information is going to work. Importantly, streamlining, revisiting the

understanding about access and the appropriate support designs.

We will skip over the safeguards one, we have covered that, the Minister

mentioned that.

I would encourage you, it is a really exciting time for the sector, to think

very strategically at a national level about what safeguards for choice and

control should look like in the new system. Hop online and have a look at

that discussion paper.

We might also skip over questions, given we are going to run out of time.

I am going to scoot through very quickly, in effect, what is the third pillar

the scheme. We have talked very much about the data and we have

talked about our support and how we are evolving the scheme to make

sure that we pick up choice and control principle of the scheme.

The scheme has a third pillar around community and mainstream. It

recognises that one person's needs alone can't change the community and

society and that we need to work, again, collaboratively within our

community to best support the needs of that person.

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I want to very quickly touch on why. Firstly, from a hard-nosed insurance

model perspective, it is a major contributor, the access to or lack thereof to

strong supports in the community, options in the community, and how far

you are away from those options, drives the scheme costs and is a

contributor to expectations around how we model.

The more we understand that, the stronger we build that, the better our

informal supports and our community and the mainstream setting up is, the

stronger that we are going to be able to capture participant outcomes and

scheme costs.

What, therefore, are we doing about building that community, that third

pillar of the scheme? Clearly the scheme was designed with the principle

around local area coordination, and really important that it is a key

resource to engage and connect seemingly random pieces of information

and capacities and options, to match and to respond to the individual's

needs.

There is a famous saying around "It takes a village." It takes a community

to best support a person with disability, and our experience, while being

different in each of the sites with our different local area coordination

model, really demonstrates the incredible value of having somebody

working and guiding and communicating.

Three areas that the local area coordination focuses on -- and I will skip

through these as well, so we have time for questions. Community

awareness and capacity building, we have touched on the fundamental

role that mainstream services play. This little graph shows you the

proportion of plans that currently capture the fact that the person is

accessing mainstream supports.

Importantly, the LAC will be working with many other bodies within a

community around individual capacity building. We probably haven't done

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this as well and as strongly as we would have liked in those early days.

I am really excited, as the scheme moves forward and evolves from the

start-up point to business as usual, that this is where we can really build

that trust and relationship with our families and individuals.

I am going to skip -- we need to go to full scheme. We can come back to

questions, but I'll make sure we have covered everything.

Sue Ham: I am going to make a couple of summary comments against

looking to the future and full scheme. Our presentation will be available to

delegates, so I don't really want to go through all of those points.

Just to say that the evidence we are gaining from our trial sites is very

much being used to look at our administrative processes and our quality

assurance findings are, again, assisting us to refine our processes and

make it work for smoothly for people coming into the scheme, but also

providing better guidance for our decision makers in relation to access

decisions and decisions about reasonable and necessary supports that

need to be in a person's plan.

We will be looking to streamline our administration and our plan

implementation, which supports both a reduced administrative burden for

the agency but also for providers and for participants in the scheme.

We are looking to build an organisational culture that is really front and

centre continuous improvement as we learn and build.

When David Bowen went across trial sites at the beginning of this year, he

certainly recognised that clearly the change process is much longer than to

get a settled state of business as usual, it is really going to take us a good

10 years to really get a scheme and a support system for people with

disability and the scheme working smoothly and mature in order to really

see what the scheme will actually mean to this country.

In terms of the implementation dates for full scheme, there are still

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discussions going on between governments, but we do know that certainly

full scheme will start to move, so that in the ACT by 2016 everybody will be

in the scheme there; and 2018 the same will happen in New South Wales

and South Australia; and for the remaining states, except for Western

Australia, everybody will be into the scheme by July 2019. Of course,

there are no heads of agreement at this stage in Western Australia.

We have talked a lot about our learnings. We have got to, I guess, work

very hard now to develop a scheme that is scalable as we start to look at

the numbers of people that will come into the scheme over the next three

years.

Stephanie Gunn: Just to illustrate that point, I thought I might share with

you some of the nightmare that keeps us awake and really on our toes,

thinking about how we are going to manage that evolution to the full

scheme.

The little line at the bottom is where we will be at the end of trial, double

where we are now, 30,000 people, and within those four years, up to

462,000 people will be in the scheme at current count. That will require

lots of innovation, lots of flexibility and lots of faith, I suppose, that there is

a difference in being in the scheme and then growing and evolving and

exploring the opportunities that the scheme does present. A big ask. And

we thought our 14,000 was hard!

Sue Ham: Just to close, we thought we might put up a story in terms of

making the NDIS real. I won't talk to this slide. We will leave it there while

we take questions, with the little bit of time we have got left.

Suzanne Colbert: Is everybody happy to take 10 minutes off our lunch and

then we can take questions through to 12.30?

I think we have all got lots of questions. It would be terrible not to have an

opportunity to ask them.

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Anita Veivers: Hello, my name is Anita Veivers from ARC Disability

Services in Cairns.

I am interested in some of the data you put up earlier around the number

of people with packages and the funding. My understanding was the

average package was expected to be around about $36,000, but with the

figures you have put up that comes to around about $51,000. I understand

you have included in that the figures from Barwon with people in supported

accommodation. Given you have a growing demand of people for

supported accommodation, how do you see that affecting the actual

funding that is in the scheme?

Stephanie Gunn: The average cost does push up, not to $51,000, but

certainly above the $35,000 that the scheme was averaged on, when you

include the large residential institutions, so it is not the shared supported

accommodation at all. We are looking in Hunter, for example, in Stockton,

in Barwon, an institution called Colanda. Those facilities are where there

is a much higher level of intensity of support.

In the shared supported accommodation, if you go back to the Victorian

data, that is well within expected ranges of costs, that when you add the

total number of people who need that facility across all of the other plans,

you do end up around pretty close to the $35,000.

There will be an increased demand and I think one of the challenges is to

devise a much more innovative and a lot less structured way of identifying

opportunities for housing. Not an easy solution but it's something that we

are working very closely with our communities on.

Anita Veivers: Thank you. Just in terms of the figures, though, you have

identified 11,029 people had a funded package and that funding totalled

$565.3 million, which when you divide it, is over $51,000 per person.

Stephanie Gunn: Go to the actuary report. I'm not going to debate the

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data. Go to the actuary report, she explains it in a lot of detail.

Geoff Rowe: Geoff Rowe from Queensland Aged and Disability Advocacy.

While you talked about a couple of transition points, the one transition

point you didn't talk about is transitioning out of the scheme when people

turn 65, or potentially 50 for indigenous Australians.

While it is very early in the trial, I am wondering what experiences, if any,

you have had of people transitioning into the aged care system or what

planning is currently occurring with the aged care system so that that

transition of people with a disability is fairly seamless, particularly given

that once the scheme is up and running we can expect potentially

2 per cent of the population to turn 65 in any year.

Stephanie Gunn: A person can choose to continue to access their

supports through the NDIS. At the moment in Barwon that is certainly the

majority of the choices. Really excitingly, the fact that the supports that we

have been able to provide in their plans has enabled them to have an

alternative than having to go into aged care facilities.

We are very conscious to recognise that for some people where their

disability is associated with more complex health needs and nursing

needs, sometimes aged care facilities are absolutely better placed to

provide that level of support and, importantly, we are then working with

those facilities to understand disability needs as well.

I think there is a really interesting space to work in. We haven't spent a lot

of time on the trial sites in that space, but you are absolutely right, going

forward, shared understanding of awareness and needs both ways will be

really, really important.

Sue Ham: In the Barkly trial site, by far the greatest level of funding going

to communities is linked to aged care, and so many of the people that we

touch and have had planning conversations with or talked about access, if

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they are over the age of 50, are choosing at this point in time to stay in the

aged care system because that's where they know that they can continue

to get their services.

I wouldn't actually call it a market in the Barkly, but the range of providers

that are in Barkly delivering and the challenges of delivering to very

dispersed small communities means that we need to work very closely with

providers to start to build the sorts of choices that people will want to make

over time.

Janet Wagland: Hi, I'm Janet Wagland from Brightwater Care Group in

Western Australia.

One of the services that we currently provide is a transitional service for

people with an acquired disability, mostly acquired neurological disability,

coming out of hospital, so newly acquired. The reason we really exist is

because of, I guess, the lack of responsiveness from a disability funding

point of view to interface with a more fast tracked health system. We are

there to support people to eventually moving into some sort of disability

funded option, and not have to move into nursing homes. We don't have

enough places and many people are still moving into nursing homes.

Can you let us know how that interface between health and the disability

sector for people with newly acquired disabilities is operating in your areas

now?

Stephanie Gunn: For the Barwon, it's a really exciting area and hopefully it

will stabilise into a kind of replicable model where we are in regular contact

with the mainstream health services that offer the rehabilitation facilities.

When a person -- we have had several spine injuries, for example, or brain

injuries, we work closely with mainstream providers to understand their

journey of rehabilitation and start planning for their transition out. Where

they might then need a home modification or a range of different supports

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to ensure that transition back into life and their family environment, early

planning is the key and we are able to work collaboratively with them to get

our bit sorted out for that person, with that person while they are still going

through those rehabilitation supports.

Lisa Minchin: Hello, it's Lisa Minchin from the Department of Health and

Human Services.

Just thinking about participant readiness, I'm wondering if you could make

some comments on the learnings to date about what preparations have

helped people to get ready to successfully transition to the scheme,

particularly thinking about some of the vulnerable groups.

Sue Ham: I guess some of the things we have talked about in terms of

preplanning workshops and peer support groups are certainly helping in

that space, and certainly we can see that disability support organisations

as they put those grassroots groups on the ground in local communities

will make a difference.

I think the transition work that we are doing between education,

employment and the agency in Tasmania are all good steps in terms of

looking at preparing people for those transitions.

Stephanie Gunn: I think the preplanning workshop, in our Hunter site, they

have done an evaluation of their preplanning. So that is really about a

conversation with the family, either individually or within a group, simply to

explain the opportunities that the scheme presents and to help them start

to scope what their goals and pressures and ideas and directions might be.

Many people early on in the scheme certainly didn't get that opportunity.

You can measure it by the number of thoughts that people have after the

initial planning conversation, I suppose. So, getting an opportunity to

explore and to think and to shape your goals and your priorities before you

come in for a conversation.

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The other really important thing is what those preplanning workshops

highlight is that there are actually lots of other things that might be useful to

connect you to as well. So the groups that we have had in those rooms,

say, "Hey, did you know about X or Y?" They have been able to put

people into good connections as well, so building the informal circles of

support before they come in for the funding support, would be a way to put

it.

Adrian Munro: Adrian Munro from Richmond Fellowship of WA.

My question is around research and innovation. If I remember correctly,

the figure was about $50 million being spent on that. I'm just wondering

how much in the research, is money spent on data collection considered

part of research funding, like client information data here? Of the

research, how much looks at a health and economic framework?

Stephanie Gunn: I knew somebody would ask me that question.

The data you see there is not part of that funding. That is purely out of the

scheme system and the actuary's work. There is some amount of those

funds allocated to supporting an expansion of -- let me get the name

right -- the census on disability. I can't swear by how much that is, I'm

sorry. I do not have with me a list of the research projects that we have

funded. I'm certainly happy to get them for you. They will probably be on

our website but we can certainly send them around.

Suzanne Colbert: We have gone well over time now. It is going on for

12.35, so it is lunchtime. Everyone is probably desperate to check their

mobile phones.

Would you join with me to thank Sue and Steph, both outstanding and

passionate advocates for the scheme's goals and strong administrators.

APPLAUSE

We have an hour left for lunch, before we regather. Thank you. Enjoy

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your lunch and try to meet as many people as you can.

(Lunch break)

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Suzanne Colbert: In the interests of being on time, I know that our next

speaker is on a tight timeframe, so it would be good if we could stick to

time.

I hope everybody enjoyed their lunch and had a chance to meet a few

people.

Who met five people at lunchtime that they didn't know before?

Fantastic. Only two people. Does that say something about collaboration

and partnership? We have got a little bit of improvement to do.

Who met three people?

A few more. Okay.

So the afternoon tea challenge is to meet somewhere between three and

five people.

Now it gives me great pleasure to introduce Mr Damian Griffis, executive

officer, First Peoples Disability Network. Damian is a leading advocate for

the human rights of Aboriginal people with disability. In 2004-05, Damian

undertook a major consultative project visiting Aboriginal communities

across the state of New South Wales, discussing the unmet needs of

Aboriginal people with disability, directly with Aboriginal people with

disability and their families. This culminated in the ground-breaking report

entitled 'Telling It Like It Is'.

Damian is currently the Chief Executive Officer of the First Peoples

Disability Network of Australia, the national peak organisation representing

Aboriginal people with disability and their families. He has worked for

more than 20 years in various capacities within the disability sector and

has been instrumental in consolidating the development of the social

movement of Aboriginal people with disabilities.

Welcome, Damian.

APPLAUSE

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Damian Griffis: Thanks very much.

I would like to begin by acknowledging the traditional owners on whose

land we meet today, the Wurundjeri people of the Kulin nation, and

acknowledge elders past and present. I'm a descendant of the Worimi

people of the Manning Valley of New South Wales and also have Scottish

and Irish heritage.

My presentation today will present a broad overview on the lived

experience of Aboriginal people with disability and give you some practical

examples on how we can start making positive change in the lives of

Aboriginal people with disability.

We say at the First Peoples Disability Network that meeting the needs of

Aboriginal people with disability is one of the most critical social justice

issues in Australia today, and I'll explain some of the reasons why.

To begin with, a bit about my organisation. We are a national peak

disability organisation. We can actually trace our history back as far as

1999 when there was a gathering of Aboriginal people with disability held

in Alice Springs. At that gathering it was recommended that people go

back to their states and set up state-based networks of and for Aboriginal

people with disability. It was really only in New South Wales that we got

started. We received a small grant from the private sector to visit a

number of Aboriginal communities in New South Wales and, as was

mentioned before, that resulted in a report called 'Telling It Like It Is'.

That was the first time there had ever been direct consultation with

Aboriginal people with disability and their families in any substantive way,

and you can imagine that raised a number of very critical systemic issues.

We are a very unique organisation in the world in that we are the only

nationally constituted formally structured indigenous disabled peoples

organisation currently in existence. Our friends in New Zealand, the Maori,

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have a Maori blind group, and some friends in Canada, there are a number

of regional based networks of indigenous Canadians, but we are very

unique in the world.

Our primary purpose is to be a voice of and for Aboriginal people with

disability. We are very unique also because we are governed, like I said

before, entirely by Aboriginal people with disability, so we have different

types of disability represented on our board.

We work locally, nationally and internationally. I don't want to give the

impression we are a large organisation, we have just four permanent staff

and started from a single employee. We are very active in the

implementation of the National Disability Insurance Scheme. I will touch

on this a little bit later.

We developed a 10-point plan for the implementation of the National

Disability Insurance Scheme in Aboriginal and Torres Strait Islander

communities, and I strongly urge you to have a look at that.

I want to begin by presenting some facts about disability in our

communities.

Firstly, it was always believed that the prevalence of disability was about

twice that than the rest of the Australian population. In the 2011 census it

was shown that at least 50 per cent of Aboriginal people have some form

of disability or long-term health condition. The prevalence of severe and

profound disability in our communities is debatable but it is at least 2.7

times higher than the rest of the Australian population.

This is actually a conservative figure because it doesn't measure the

prevalence of psychosocial disability or the prevalence of mental health. In

some communities, Aboriginal psychologists will talk about things like

depression and anxiety and post-traumatic stress disorder being

normalised in many of our communities, so it's not actually known if this

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figure is accurate. It's not an accurate figure.

The other thing to note is there is very little information material on

disability in Aboriginal communities. You won't find much written about it.

If you do, it is very likely to have come from our organisation. There are

some small pilot studies here and there but it is not an area that is well

understood; it's been overlooked for far too long. That's because we have

a very dominant Aboriginal health agenda, and that is right and proper, but

it doesn't look appropriately at the issue of disability.

The other thing that is really important to note is most Aboriginal people

living with disability don't self-identify as people living about with disability,

and I'll explain some of the reasons why.

In traditional language, it has been shown there was no comparable word

for "disability". There have been some studies done by anthropologists on

Pitjatjanjara language and there was no word for "disability" in those

communities. That's a wonderful thing because it suggests it was an

accepted part of the human experience. People tend to be talked about

more in an impairment based way, "Brother can't hear too well" or

"Cousin's got one leg" or "Aunty is a bit slower than everyone else"; not

said in a pejorative way but more about this is what we need to think about

when we want to support this person to participate in our community.

We would argue there's a lot to learn for the rest of the disability rights

movement in the way disability has been embraced or accepted in

Aboriginal Australia.

Not long ago there was an excavation done at Lake Mungo -- I don't know

if people are familiar with that -- one of the oldest archaeological sites in

the world, and there was a footprint of a one-legged man discovered in the

footprints, and it appeared the person was participating in a hunt, that's the

theory, and using a stick to participate. That would obviously suggest that

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person was also an accepted member of the community.

The other reason why Aboriginal people don't tend to self-identify -- there

are a number of reasons why -- some parents are very reluctant to seek

help because they worry they are going to be judged as bad parents.

I certainly know here in the state of Victoria, but in every one of our states

across Australia, the number of Aboriginal kids in out-of-home care is

comparable to that of the Stolen Generations, so parents feel a great risk

in asking for help. They worry they will be judged in a particular way and it

may result in the removal of their child; another reason why Aboriginal

families don't seek help.

Another reason is, why would you take on another perceived negative

label if you already experience discrimination based around your

Aboriginality? But the other thing Aboriginal people will tell, they are

Aboriginal people first and their disability is just part of who they are.

Most Aboriginal people with disability are likely to acquire a disability from

a preventable health condition, such as diabetes. We have very high rates

of amputation in Aboriginal Australia, for example. They are very likely to

experience multiple layers of discrimination, which is often referred to as

double disadvantaged; very unlikely to be in employment, very few

Aboriginal people with disability in employment; very likely to have

withdrawn from the education system or perhaps not to have accessed it at

all, which is still a not uncommon story; and they are unlikely to have

accessed the service in any meaningful way.

In my home state of New South Wales, most Aboriginal people with

disability interact with the Aboriginal home care program. But we would

argue that is not a disability support service, that is domestic duties,

keeping your house tidy sort of service, it's not about community

participation as such.

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The other thing to note is the medical model has had a profoundly negative

impact on the lives of many Aboriginal people with disability. We see this

most evident in the 'Closing the Gap' campaign. 'Closing the Gap' is

obviously a critical campaign but what it doesn't address is the whole of life

needs of Aboriginal people with disability.

A couple of examples that are all too common. Old fella presents at

hospital at crisis point -- he doesn't want to go to hospital for a whole host

of reasons -- because of complications around his diabetes and he ends

up having to have an amputation.

Then he is wheeled out the front of the hospital and that's the end of it.

There's been a medical intervention, a tick for that if you like, but he

returns or can't return to his community because there's no accessible

transport or no accessible housing.

Kids with hearing impairment, Aboriginal kids, very high rates of that in our

community, as you are probably aware. Kids can get a fairly simple

procedure done to can assist with that, a medical intervention, but in fact

some of the kids may not have been hearing properly for three, four or five

years, so they actually have a learning disability. So, again, we have got

medical intervention but nothing around social model whole of life going

on.

There is also a very significant under-reporting of disability in our

communities, for those reasons that I mentioned before. We also have

some particular issues of very significant concern, we have very high rates

of incarceration of Aboriginal people with disability in our prisons across

Australia; very significant numbers of Aboriginal people with disability, with

cognitive impairment, acquired brain injury, any number of disability types,

who are in jails across the country. One of the great unknowns in fact.

In many ways, disability is a very new conversation. It's not something that

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has been talked about in the sense of accessing services, in the rest of the

way the mainstream Australian population deals with disability. Like I said

before, very little research into disability in Aboriginal Australia.

There are a number of social factors that contribute to the higher

prevalence of disability. Some of these are very obvious and they are well

known: lack of access to good quality healthcare. If you don't have access

to good health education when you are a mother carrying a child, perhaps

not familiar with how to maintain good health, for example, that can clearly

cause disability. A lack of access to appropriate housing and urban

infrastructure.

Australia under the 'Closing the Gap' report, just recently published, went

backwards on the measure of the provision of clean drinking water in

Australia. That's an extraordinary thing to contemplate, but many of the

communities that we work in don't have access to a reliable water supply,

which is quite extraordinary to contemplate in one of the wealthiest

countries on earth, and that is a measure that has gone backwards.

There are also plenty of communities that don't have access to a reliable

electrical supply, for example.

In those communities where this is an issue -- and I want to stress, this is

not a universal Aboriginal story; it is sometimes portrayed this way -- in

those communities where there is an issue around violence and abuse,

that is clearly a cause of disability. It may be interpersonal violence,

people fall over and hit their head and have an acquired brain injury. In

those communities where there is an issue -- and I always like to remind

people there are no more alcoholics in Aboriginal Australia per capita than

there are in the rest of Australia. In fact, per capita there are more

teetotallers in Aboriginal Australia than there are in the rest of the Australia

population. It's just that those people who tend to drink do drink very

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solidly and at very dangerous levels. But in those communities where this

is an issue, that clearly causes disability. If you drink too much, you can

get an acquired brain injury or any number of health-related issues and

consequential disability.

A very poorly understood area and one that is a big focus of our work is

the psychosocial impact of colonisation, dispossession from land, the

mental health consequences of losing access to country.

The best analogy I can draw to that is that I used to work at Beyond Blue

years ago and there was rightfully a very strong campaign around mental

health in the Australian farming population. I think we all know there are

very high rates of suicide in regional Australia, particularly amongst the

Australian farming population. Often farmers talk about having to move off

the land because the land is no longer profitable or they are being pushed

out by bigger companies, and they talk about that pain in a real meaningful

and deep way, they are dispossessed. That is a consequence of their

mental health -- it has mental health consequences. So there is an

obvious correlation with the mental health story for many parts of

Aboriginal Australia.

Some people in some communities have lost access to places of meaning

and significance, places of learning. These all have very serious mental

health consequences and they all contribute to transgenerational trauma.

There has been some research done recently on Jewish holocaust

survivor families where, generations later, children exhibit post-traumatic

behaviours, even though they weren't in the prison camps -- a very similar

story in Aboriginal Australia.

There are issues around the prevalence of particular types of disability in

some of our communities, emerging disability types like foetal alcohol

spectrum disorder. In some parts of the country where this is a significant

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issue, in the Kimberley region around Fitzroy Crossing, for example, as

many as 20 per cent of young Aboriginal kids are being diagnosed or

assessed as having foetal alcohol spectrum disorder. That would be an

emerging disability type across Australia in general in any case.

There are some unique genetic conditions that occur only in Aboriginal

Australia. I'm thinking of the Groote Eylandt community, that has the MJD

condition, Machado Joseph Disease, which only also occurs in parts of

China and Portugal, which would be something to do with the old

relationships that happened well before the English came to Australia. It is

a genetic condition that only occurs in Groote Eylandt and in those other

parts of the Northern Territory where Groote Eylandters travel to.

There are other issues around a lack of understanding of the prevalence of

mental illness, and we are often talking about multiple players of

discrimination, as I mentioned before.

I realise I'm not painting a very rosy picture here, but I'll get to some of the

things that we are doing to address these issues.

We are often talking about the denial of the most fundamental of human

rights in many communities and that is the access to education, access to

shelter.

Aboriginal people with disability have very different experiences depending

on where they are in the country. It is always important to remember that

Aboriginal Australia is very diverse. Many Aboriginal families have mixed

heritage, particularly down this way, and in upper New South Wales. But

there is also Aboriginal people that still live a traditional life and speak the

language; in fact, English may be a third or fourth language, for example.

Aboriginal Australia is very diverse and there is no one story.

But at least in Sydney there is likely to be choice for people. They might

live in Blacktown and they have some choice around what services they

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can access. But in my home state -- and anyone from New South Wales,

I'm sure would agree with this -- once you get beyond the Blue Mountains,

a different story, lack of services is a problem for everybody, no doubt

about it.

We are really talking often around a failure of nongovernment and the

government to meet the needs of Aboriginal people with disability, but

regrettably this is also a failure on the part of Aboriginal Australia. I don't

want for a minute to pretend I'm just pointing the finger at the services

system and government.

This is a conversation that hasn't really been had in our communities. You

won't hear Aboriginal leadership talk about the issue of disability much at

all, unfortunately. In fact, it is still the case that Aboriginal organisations

discriminate against Aboriginal people with disability.

In a way, in a crude sense, we talk about disability being where it was in

the rest of Australia 50 to 100 years ago, so there's a lot of catch-up to do

in a lot of ways.

There's also a very significant issue around access to information. There's

only one way to provide information in our communities and that's through

a concerted outreach approach. You have to do it in community, you have

to go and see people. You've got to not expect the people will come to

you.

The tendency these days is for a lot of information to be provided by

putting a nice Aboriginal picture on a brochure, which is all well and good,

but it is actually about engaging with community and explaining the

system.

As I touched on before, most Aboriginal people don't use the language

within the disability service system. There's an endless list of labels, as we

all know, in disability -- cerebral palsy, autism, intellectual disability,

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cognitive impairment, psychosocial disability. They are just not terms used

in community, so we have to tailor our language to talk about it in a way

that is about the impairment and what people need to understand in terms

of accessing services. That is a really critical issue.

There is a very significant lack of awareness of specialist assistance and

other beneficial programs. We still meet a lot of Aboriginal people who

have never been on the disability support pension, for example, even

though they would clearly qualify. Even though there is some mythology

out there about welfare, that is a whole other issue, but in our experience

there are a number of carers also who have never had access to the

carer's allowance.

A really critical issue in terms of understanding the origins of disability from

an Aboriginal perspective requires us to understand the experience of

colonisation for Aboriginal people with disability.

These things are now well established in Australian society and they are

hopefully not controversial any longer, but the colonised have viewed

Aboriginal Australians as inferior, as savages; putting it really bluntly, black

is bad, white is good; and even perhaps as curiosities or as uncivilised. At

its best, it was described as the noble savage in the romantic view or at its

worst as being nothing more than monkeys and apes. I am using

language that appeared throughout the media of the day.

The Eugenics movement was widely practised in Australia. Eugenics was

about measuring skulls and brain sizes and things, to try and create a

scientific argument for difference. The Nazis were very good at Eugenics,

measuring noses, brains. All those things happened here in Australia.

That's why we still have brains and skeletons located in museums in

London.

The experience has been one of a different narrative. The narrative of the

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experience between Aboriginal Australia and the coloniser has varied from

one of benevolence -- certainly in the part of the country where my family

comes from, relations initially weren't too bad. The Australian Agricultural

Company was very active in Worimi country in the 1820s to 1850s, and

they required a workforce, so they engaged with Aboriginal people and

paid people -- when I say paid, you could obviously dispute whether

people were paid well, but they needed Aboriginal people to support the

growth of that organisation.

When the Australian Agricultural Company moved back and it wasn't

profitable any more, we moved into a mission or segregation era, where

people were placed usually in missions more than a day's ride out of town

usually is where they built them, or just far enough away that people

couldn't easily access town. A similar story to the institutionalisation of

people with disability in many ways; the sandstone institutions next to

rivers or up on hills.

Then a movement towards talking about self-determination. So there has

been a different narrative throughout the whole stream.

Then fundamentally introduced a system of governance that is foreign to

many Aboriginal Australians.

The other thing that happened is labels were introduced. They include the

labels of the very offensive terms that people are familiar with today --

half-caste, quadroon, octoroon, one-16th -- again, a scientific way of

describing people, but they also included labels around disability that

hadn't been introduced before.

As I said before, in our community people were described by their

impairment, "One-legged Jimmy" or "Cousin who can't move around too

well" or "Brother who can't hear properly". Then all these other challenges

around trying to breed the black out in people and the introduction of labels

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of disability.

The reason I have to mention this is because we have to get to the bottom

of understanding these things, the true narrative of the relationship

between Aboriginal Australia and the rest of Australia, if we are going to

work meaningfully and successfully together.

There is a poem that really sums up the point I am trying to make really

well. It says:

"In my dreams I hear my tribe

Laughing as they hunt and swim,

But dreams are shattered by rushing car,

By grinding tram and hissing train,

And I see no more my tribe of old

As I walk alone in the teeming town."

I think that is a really important way of understanding the lived experience

of many Aboriginal people and many Aboriginal people with disability in

terms of colonisation.

Today, this still plays out in some very uncomfortable ways. Aboriginal

people with disability experience racial discrimination, and it is particularly

a problem in some of the more regional and remote parts of Australia.

I have been involved in a matter lately that relates to Aboriginal people

being charged twice the rate of everyone else in the community to access

the community transport bus. You wouldn't believe these things go on in

Australia, but they certainly do. That community feels so disempowered

that they accept what they have; it is better to accept what you have than

to try to make a scene about it.

We also see it play out in a slightly more sophisticated way these days. It

is often described as the soft discrimination of low expectation. We see

this in the education system particularly. We refer to it as the bad black

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kids syndrome.

It might be an Aboriginal kid at the back of the classroom, mucking up. He

might -- it happens all too often -- get suspended or expelled from school

and then might start hanging around the local shops and the police might

start saying, "It's time for you to move on," or "Why aren't you at school?"

Then they end up in the juvenile justice system. Then when we come

across the family, it turns out there was a disability story in there.

Sometimes there is a perception of Aboriginal kids -- I'm not saying this is

universal, but it happens, and it is the soft discrimination of low

expectations -- Aboriginal kid perhaps won't quite get it, not going to

achieve in this classroom, not going to make it. Then when we unpack it,

the child may be coming from an environment where he or she doesn't get

enough sleep or may have a hearing impairment or a vision impairment,

for example.

A lot of Aboriginal people with disability live in extreme poverty; and those

other reasons I talked about, about disability being often medicalised.

I realise I'm not presenting a particularly rosy picture but I have to tell it as

it is, if you like, because, as I said at the outset, meeting the needs of

Aboriginal people with disability we say is one of the most critical social

justice issues in Australia today. We would say it is hard to think of any

more disadvantaged Australians than Aboriginal people living with

disability.

So what are we doing about it? We have networks at different stages of

development around Australia. There are networks of Aboriginal people

with disability, a very active one in New South Wales that has three staff

attached to it. Its job fundamentally is to go around the state and engage

with Aboriginal people with disability and their families, to get them to learn

to have confidence in the disability service system, to break down some of

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the fear and stigma and barriers that people are concerned about in terms

of accessing services.

We also have a newish network here in Victoria. If anyone from the

Victorian Government is here, I'm not sure, but we anticipate hopefully

being able to employ a coordinator for that network in the next little while.

Just recently we conducted a number of disability yarn-ups across Victoria,

with a view to trying growing a network to be a voice of and for Aboriginal

people with disability.

In South Australia there is a network that acts as an advisory committee to

the South Australian Government and in Queensland we have a network

that is hopefully going to continue to grow and do important work up there,

which is critical, being set in the most populist Aboriginal state in Australia.

You noticed I'm not mentioning anything about service providers. This is a

real important issue, and one that I guess I'm appealing to people in the

room who come from that sector, is there really are no Aboriginal disability

service providers in Australia. In my home state there were a couple of

group homes that were run for a while, and then there was the Aboriginal

home care service, which is still in existence, but that's not a disability

service. That's not me running it down, it's just not a disability service, it's

to support people to do things around the home, basically.

There's a critical need to, firstly, build the capacity of an Aboriginal

disability service system but, secondly, we need the existing service

system to provide support to Aboriginal people with disability.

It's a fact that we engage with community about a lot, that they need to

understand how they can act of their own volition and speak up, so they

can get what they want and get what they need in terms of services. We

are not a service provider and are never likely to be. We have a full

enough agenda as it is, in any case.

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That's a critical issue where we are always looking for partners, particularly

to work as capacity builders. We don't want to develop a system where

service providers come in and almost intervene, if you like, in some of our

communities. Because it is a truth that Aboriginal disadvantage is an

industry and it is often not owned by Aboriginal people.

The best role that service providers can play is to build capacity and

mentor existing Aboriginal services to engage with the disability service

sector.

A good example of how absurd things have become in some ways, in

Wilcannia, where I spend quite a bit of time, a town of about 800 or 900

people, about 90 per cent of the population is Aboriginal, there's something

like 60 funded state and Commonwealth programs in a town of 800

people. There's three employment providers; at least, there were the last

time I was out there, about six months ago. Three employment providers.

Someone is cooking the books, frankly.

That's clearly a case of overservicing. It used to happen down the block

where we are at Redfern too. Again, it is a siloing thing of different

organisations, often well intended, perhaps not working closely with each

other. Ideally, you would only need a few supports in that community.

The other example I like to give in this situation is it's not always going to

be about services. That's the other challenge. I can think of a very remote

community of about 100 people where, as statistics bear out, there are a

number of Aboriginal people with disability, including a number of

Aboriginal people with severe and profound disability. When it was

reported back to government that there were some issues up there, the

government's first reaction was, "We've got to get out there and provide a

home care service," when all that community wanted and needed was a

wheelchair accessible bus. That would have been a perfectly appropriate

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response, then people could be driven the 200ks to go do their shopping

and see the doctor, plus potentially that would have employed a few

people in town to be the driver and those sort of things.

It's about understanding what's really needed but understanding the

mentoring role is a critical one. A lot of people in our communities don't

understand, like I said before, the language of disability, so there's a really

critical opportunity here for partnership.

We don't really have anything formal happening in the Northern Territory,

ACT or Tassie, and we just started to do some work in the Torres Strait

Islands. For friends from Queensland, they would only know too well how

challenging the issues are up that way. How do you provide service in a

very remote part of the country that is dependent on using the sea to get

around? A unique issue in many ways.

Fundamentally we are about locally based solutions. That's the critical

way of making change. Creating a system from afar is never going to work

in our communities, but I'd argue that wouldn't work in any community, to

be honest with you. I don't think that's rocket science. I don't know that

anyone in regional Australia necessarily wants to have their programs

developed from a long way away.

The other thing -- this hasn't come out terribly well -- some little things that

you can do just to make your organisations perhaps more friendly, for want

of a better term, to Aboriginal people, is understanding the country you are

in, understanding the diversity of Aboriginal Australia. It's a truly amazing

map of Australia, this one; I'm sure many of you are familiar with it. But

understanding where you are situated in the country is really important to

be able to engage effectively with your local communities.

I did want to touch on some really practical things. Any time I have a bit of

a yarn like this, I want to make sure I'm leaving people with some practical

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information. This is not meant to be presented in a way -- many of you

perhaps don't do this anyway, and if you're not doing this, that's fine, but it

is important, one of the most common phone calls we get to our office or

one of the most common conversations I find I have with people after a

conference is, "We've tried to have a yarn with the local fellas and they

didn't want to talk to us," or "We tried really hard and they told us to get

nicked," or "What do we do, how do we engage?"

I think the first thing is going back to the map. Understand whose country

you are in and get to understand the history of that area. You might be

surprised, there's a lot more untold history in Australia than told history, I'd

argue. There could be some really interesting things to know down the

road in Melbourne or there could be some very important things to know if

you are from Ballarat or Bendigo. It's really important to understand the

local community you are in. It may have been a place of very significant

conflict. It may have been a place where there was a mission. That

would, by definition, cause great distrust, so that means it's going to take

an extra effort to make change.

But I can tell you there's great things happening throughout Aboriginal

Australia and very positive relationships going on all the time.

This is a challenge -- this first one will be a challenge for the National

Disability Insurance Scheme, assessments. By definition, I think it

probably annoys a lot of people, but for Aboriginal people, you can imagine

the connotation this might have. Here comes mission man with his pen in

his top pocket, he's checking me out. What's he going to ask me? What

are they going to use against me here?

Like I said before, the number of Aboriginal kids in out-of-home care is still

a common story, so in every community in Australia, someone knows

someone whose kid doesn't live at home any more. I'm putting to one side

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whether that's the right thing or the wrong thing to do; the truth is that's still

a conversation that's happening, so people have that fear within them.

I don't necessarily want to dress this up as cultural, I think it's politeness in

many ways. Using the conversational approach: it is important to tell

people where you are from and where your family is from, Scottish, Irish,

or third generation Australian or whatever. People may and probably will

want to know these things. It's just telling people who you are. That's a

good thing.

Sometimes our system is more about performing a particular role, but in

our communities it's about getting to know one another in a very simple

way.

My experience working with farming communities is no different, sit down

and have a cup of tea and have a yarn; same sort of idea.

If the individual is introduced as an Aunty or Uncle, then that is how they

should be addressed; it is effectively a title. If in doubt, ask someone, "Can

I call you Aunty?" or "Can I call you Uncle?" They might say no or they

might say yes. But it is a term of authority and recognises a person's

status in the community, so it is important. It's not Aunty or Uncle literally,

not my aunty or uncle in a literal biological sense, but it's a status in many

ways.

Always allow for more than one visit. This is a huge challenge for

everyone in the room and it's a challenge for my organisation too, because

we only have three or four staff and we are working across Australia. We

have the same issues.

We need to go back to communities to continue to engage, particularly the

more traditional communities. Some of those fellas might see us as no

different to anyone else. My family's story, for some of them fellas, is,

"Wow, you are really out of touch with your family's Aboriginality." It's a

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different story for them, whereas they are still strong and inherent and

proud of their identity and they feel it and they know it and know their

stories. That part of the country didn't have the same assimilation

experience, didn't have the same experience.

Going back regularly is a really important part of your work. You mightn't

always get the warmest welcome first time around, sometimes, and it

happens to us too. But if you keep going back, you'll start making inroads

and you'll start building the relationship.

I know this is a challenge and it's very resource intensive, but sometimes

you might be having a yarn and it's still going at 6 or 7 o'clock at night,

that's the other challenge too, people are just warming up. Sometimes

when you talk to the old fellas out in more traditional communities, there

can be a lot of silence. There can be a lot of silence. Silence is not

something we are probably that used to in many ways but sometimes them

fellas are just thinking about stuff. They're in no rush, "We'll have a yarn

with you." In those situations, I guess you want to be careful you don't

overtalk it, there always the risk there.

There are some ways of engaging; again, I'm really talking about ways of

being polite, I guess.

Being aware of family structure. If someone is identified in the community

as an elder, it is really important not to undermine their authority, so if they

are an elder having a yarn, then they are having a yarn.

Sometimes -- my organisation has to do this a lot, too -- we need to

educate some of our elders around disability stuff. In traditional

communities, sometimes disability is described as a consequence, married

wrong way, you married outside your skin group, that's why your child has

a disability. That's particularly challenging, that's a challenge for our

organisation too.

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So that traditional view, which is very similar to many other cultures in the

world -- in fact, in mainstream disability you could be institutionalised for

epilepsy up to 50 years ago, for example.

In many ways, understanding the different ways it can be brought about is

really important. Married wrong way, married outside your skin group, are

all really important things to try to understand.

The way we try to address those issues is by having Aboriginal people with

disability themselves telling that story. One day when the relationship gets

stronger, I can think of a fellow who is very active in our organisation who

is a blind man and he was diagnosed by Fred Hollows, but when he shares

his story around, how he acquired his disability, it was a medical condition,

it is far more powerful than anything I could ever say, but that engages with

community very personally and very appropriately.

I don't need to tell people, there are many offensive terms that are used

less and less these days, which is really important, but they are very

offensive for very obvious reasons and not to be used, frankly.

Some other ideas that are really important: attending events such as

NADOC Week. But don't just leave your work to NADOC Week, it's really

important to have ongoing relationships in your local community.

Sorry Day is an increasingly important event in Australia. Local sports can

be a good way to get in with community; sport is really important to a lot of

our mob. Art groups is also another one. In New South Wales, the Koori

rugby league knock-out is one of the largest indigenous sporting events in

the world and that's a really important way of engaging with people.

Accepting referrals from Aboriginal people: they will often come from a

third party. They won't necessarily come directly, and it's important to

acknowledge that that may be the way people try to access your service.

Nominating key workers in your organisation is really important. Another

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part of the work that is a huge challenge for the service system is

invariably this work is relationship based, so people in community will want

to build a relationship with someone and that can put enormous pressure

on that individual. It happens again in our organisation, but that's just the

truth of it, it's relationship based work, frankly.

Nominating key workers who might want to be the person who says, "I'm

going to be the one who is going to engage with community, I'm the one

who is going to try to make change."

Always give the opportunity for a client to use an advocate, that's really

important; ensuring staff are culturally competent and sensitive, so that's

got to be more than just doing a Bush Tucker Workshop, it's got to be

something meaningful; but, again, understanding where you are in the

country and perhaps some of the history of the local area is really

important to understand.

Forming partnerships with key Aboriginal organisations is really critical.

Some key Aboriginal organisations have a way to go in understanding

disability, though. That may well be a truth. I can think of some Aboriginal

Land Councils -- and it is not always popular to say, but it is true -- perhaps

they are not in wheelchair accessible buildings, for example, so they are

excluding Aboriginal people with disability, not in a malicious way but it's

more indicative of where disability is in terms of the conversation in our

community. Some of our deaf members have had great difficulty in

participating in Land Council meetings because they don't get access to

Auslan interpreters, for example.

So there is a role for educating, too, in many ways.

Making your reception area friendly and all those sorts of things are also

important things to be doing within your service organisations.

I'm almost done.

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I think there are some really fundamental roles we can all play. I think

understanding that we need to educate and train, for want of a better word,

Aboriginal people about their rights and entitlements. Very few -- and this

is a huge challenge when it comes to the NDIS -- it is a very simple

premise and I know colleagues who work with people with intellectual

disability say a similar thing: if you don't know what your rights are, you

don't know what to ask for. A very simple premise. Or if you've never had

an opportunity to exercise rights, again you don't really know what to ask

for.

Or if your priority is just to live day to day and keep surviving, then notions

of goal setting and planning and where I want to be in 10 years are very

abstract concepts. So we have to tailor the system -- not to say those

things shouldn't happen, but it's about understanding exactly what the lived

experiences of people are.

There are any number of other things I want to say. The other thing I really

encourage people to do is please get in contact with us at any stage, we

are very keen to partner with organisations. We need disability service

providers to be active in this space in a way that will really make a

difference to people, so feel free to contact us via the email address or

give us a ring in the office. I'm over time, I'll have to leave it there. Thanks

very much.

APPLAUSE

Suzanne Colbert: Damian is going to make time for one question, if there

is any burning questions in the audience. If not, we will move on.

Question: I would just like to congratulate you on your presentation,

I found it excellent.

APPLAUSE

Suzanne Colbert: Thank you so much, Damian. He is one of the hardest

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working people I know, so we are very privileged to have him here today.

Thank you.

I would like to invite Mary and John to both come to the stage now, to work

through the next two sessions, before we go to afternoon tea.

Mary Nolan is the founding director of Inability Possability, a not for profit

volunteer organisation that works with and for young people with severe

acquired brain injury. Mary is also a founding member of the Young

People's Alliance and was recognised by the Human Rights and Equal

Opportunity Commission in their 2002 award, which is quite an accolade.

Mary was appointed a member of the Order of Australia in 2011 for service

to people with acquired brain injury particularly as an advocate for age

appropriate accommodation. Welcome.

APPLAUSE

Mary Nolan: Thank you. Megan is my techno person.

I feel a bit of a kinship with Damian, being a person of the land, and having

a strong connection with it.

Imagine being in the prime of your life and then, after a gap of weeks or

months, finding yourself emerging from a coma, hearing and

understanding but unable to move or speak or perhaps see, and people

treating you as if you are not there. You are trapped in a profoundly

disabled body and communication system.

Brain injury can happen to anyone at any time.

Good afternoon, my name is Mary Nolan, and you have heard about

Inability Possability. Our name, as you can see, is misspelling Possability,

because we believe we all have inability possabilities, so it puts us on the

one footing, on more of a relational footing.

It is a Melbourne based volunteer organisation which seeks to help young

people with acquired brain injury with very high and complex needs; most

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have a narrow margin of health.

We began in 2001 when a group of people came together to create a float,

led by three young people with ABI, for the Victorian Federation Day

Parade. The aim was to highlight the plight of young people with very

severe acquired brain injury.

After numerous projects, a family and friends association formed, and this

includes young people who live in various situations; nursing homes, at

home, community houses, acute care.

The association consists of over 50 people, including 20

young people with severe ABI.

This afternoon I'm going to speak about the development and

practice of the socio-medical support, synthesising the

medical and social response to disability and health

care to meet the needs of these people and others like

them; it can be applied to others.

This model approach brings together the interface between

health and disability and, when successfully

implemented, good health and social wellbeing is

promoted, enabling young people with severe ABI to

participate as interdependent members of society.

I am just going to say "people" from now on. I'm speaking

about young people with very high and complex medical

needs, usually nonverbal and with a very narrow margin

of health.

I've been very nervous in preparing this paper, mainly

because you and we are so important in taking this NDIS

and NDIA forward, and the divide between disability and

health in the social and medical models is like a

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chasm. Chasms need bridges to connect, philosophical

and practical chasms at every level, between all who

espouse one or other, and I hope we can put some

further foundations in for bridges.

Just a bit of historical stuff. In 2001, the World Health

Organisation in its ICF called for the medical and

social models to come together. In 2002, they followed

up with a document called 'Towards a Common Language'.

The COAG Young People in Residential Aged Care (YPIRAC)

Agreement of 2006 to 2011, there were two big

positives. It got some young people out of nursing

homes, and the second one was that it proved that

disability funding, for example, for social access and

equipment, can make life much better for other young

people in nursing homes. But the mid-term review

stated that this very high and complex needs group had

not been addressed and they need the various sectors to

come together -- disability, health, aged care and

rehab.

There are two big areas of division between health and

disability, language and attitudes. I think the

sectors have different understandings, even of basic

words such as "care" and "support". They have

different standards, frameworks, processes, timeframes,

structures, planning and can act in silos, rather than

focusing on the person involved.

I say "partnership" -- and I suspect we could have a very

interesting conversation about what that looks like and

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how structures and processes are set up to enable a

person to thrive or not.

Partnership assumes we listen to each other and clarify

what's been said, is what I'm hearing. Otherwise we

are talking with good intent but along separate lines.

The beginnings of this model came in 1996 when we were

plunged into the world of profound acquired brain

injury disability.

I would like to pay tribute to Chris, who has been our

inspiration ever since. Our son Chris was and is a

high achiever. He grew up on our family farm at

Meredith, was captain of St Pat's College, Ballarat, in

1985, founded the Meredith Music Festival in 1991,

captain of the local cricket club, and a lawyer with a

great capacity for friendship, loved music, sport, the

land and fun.

Chris went to work as a lawyer in Hanoi in 1995 on an

Austrade fellowship, learning Vietnamese. Almost a

year later, he had suffered a multiorgan collapse and a

catastrophic brain injury in Hanoi. He was 28. He

spent three weeks in Singapore ICU and was airlifted to

Saint V's, Melbourne, on life support, six months in a

coma, and he woke up laughing at a joke. He continued

to respond appropriately -- he would have times when he

wasn't -- and we and friends knew he was hearing and

understanding, but most medicos said it was impossible

with the severity of his brain injury.

I hate to imagine even Chris becoming aware and waking up,

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being unable to move or speak or see much, or even ask

a basic question about, "What in the hell happened and

where am I?"

We set up a group of four for decision-making, right back

at that point, because I knew my husband and I were

going to struggle. So a doctor friend of his and a

lawyer friend of his came in and we made pretty

significant decisions, because we felt they held an

aspect of Chris's truth that we didn't have.

Doctors told us, "You're everyone's worst nightmare, it

could be one of us or our son or daughter." I left my

work as a radiographer and home in Meredith to go to

Chris in May 1996 and I haven't spent longer than three

weeks at a time back there since. My husband Jack and

I celebrate 50 years of marriage next month, despite

all of that.

I tell Chris he owes me heaps for being his personal

assistant all these years, and he smiles.

But that's a role which I'm not going to have time to

develop.

I hope the roadmap of the socio-medical approach we have

developed can be adapted and used by others in this new

NDIS world, with the support needed to facilitate

people with high and complex needs.

Chris was refused by rehab facilities, and two days before

Christmas in 1996 he was discharged from Saint V's to a

Fitzroy nursing home. We had chosen this because it

had a strong and embedded philosophy and practice of

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partnership in care. He was one of the first to be

funded under the then new Victorian ABI Slow to Recover

program, for young people with very severe brain

injury. I would really like to pay tribute to those

who came before us, the families and advocates, Rob

Knowles, the Minister at the time, and the bureaucrats

who set it up. It was personalised and individualised

funding allotted to each person in his or her own

living situation, acknowledging the unique needs and

slow gains over a lifetime that can happen with ABI, so

in some ways it has similarity with NDIS.

From the start we had what we described as core residential

aged funding, the basic, and the individualised Slow to

Recover, over which we had control.

We chose the therapists who trained the carers, who were

also chosen by us. So, with the director of nursing,

Dr Rosalie Hudson, but no precedent to follow, we

worked together with doctors, allied health therapists,

friends and nursing home staff to help Chris. It was

like living in a different world with no roadmap.

No one expected Chris to live beyond a few months. He was

very fragile. Just an example: fear and extreme

spasticity and pain meant he used twice the number of

calories at that time to maintain body weight, which

was about 62kg.

A few interested nurses became the primary care team and,

little by little, we observed what helped him to relax.

With therapists gradually trialling movement programs

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and teaching carers, he slowly began to improve.

Another significant point: we chose to keep Chris in

Melbourne, close and accessible to his friendship

network and allied health professionals who could help

him. There were very few at the time who were working

in this area. This is still an issue, together with

professionals who are prepared to work in partnership.

This is even worse, I think, in some regional areas.

Now, 18 years on, Chris, in contrast to most other young

people with ABI, is very fortunate that his network

just not maintains, but continues to expand as the

almost 47-year-old he is.

Adapting the model of care, based on the philosophy and

practice of partnership, we worked together with the

team to set up processes and protocols, to help Chris

to survive and thrive.

Over the next nine years at that nursing home, that

developing socio-medical model or approach was adapted

for eight other young people with very high and complex

needs. One had progressive neurodisability, the others

all had severe ABI. They came from varied ethnic and

social situations, and all improved under this model of

care. The staff had really taken on the whole

philosophy and practice. Two of them came in not

eating, walking or talking and they left to live in

community facilities, doing all three.

The philosophical underpinning of the partnership model

comes from the view that we are persons, not in

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isolation from one another but in community, so an

appropriate caring environment supports and fosters

each person's communal place in the world. The

partnership model allows for young people with ABI,

families, friends, carers, professionals, to belong to

the one community. It is a reciprocal relationship

involving the wider community also.

Following Inability Possability, later that year, as you

heard, I was one of the founding members of Victorian

Young People's Nursing Home Consortium, which was a

forerunner to the National Alliance. I was then

employed on a project, which I pushed, for a unit for

two or three young people attached to the Fitzroy

nursing home. The aim there was to utilise the nursing

resources but with an area specific for younger people,

using this established socio-medical approach.

Unfortunately, new administration meant the project

didn't proceed.

In 2004, we heard the nursing home was closing. Chris

still had nowhere to go, other than residential aged

care. We called about 16 representative family and

friends together, to ask them, would they be prepared

to define what does Chris want and need and how do we

get it.

That group has met at least bi-monthly up to the present

time, with subgroups in between for specific areas. It

is still called the "What Does Chris Want" group.

Suffice to say, "What Does Chris Want" was very active

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politically and in media and influential in getting the

COAG agreement and, after that, the promise of a

10-person place for young people with very high needs.

As an interim, we chose a nursing home in Brunswick, and in

March 2006, after the previous one closed, Chris moved

to Brunswick, with an individualised support package;

what we call here in Victoria an ISP. We had

negotiated and agreed beforehand with the nursing home

on the philosophy and practice of partnership, Chris's

own therapy and carer team moved with him and the model

was to continue. There was some resistance from staff

but later it was adapted for a second young person, who

improved enough to move to a community house.

The core funding in residential aged care, I think it is

acknowledged that it really doesn't allow for the very

high and complex needs of young people. So we choose

how to use Chris's ISP, which funds carers each day for

personal care, oral hygiene and meals, movement

program, getting outside in the local area, trips to

the farm and other events, and equipment and

professionals, training, et cetera.

In 2008, after several years in the making, "What Does

Chris Want", with help from Inability Possability,

published our book, "Acquired Brain Injury: A

Socio-medical Model for Young People with Very Severe

ABI". Bill Shorten, who was at law school with Chris

and had reconnected after he became Parliamentary

Secretary for Disabilities, launched the book in 2008.

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It is presently being revised for a third edition.

Despite being on reference groups in the Department of

Human Services and the organisation which won the

tender for the 10-person facility we had worked so hard

for, and writing the model, we made the very difficult

decision with Chris to refuse his place in what was a

beautiful building. But I think we all know a building

doesn't make a home.

Two main reasons. It was block funded. The same

organisation was landlord, service provider and holder

of funds, and this took the power of decision-making

integral to the model of care away from the person. We

asked the question of ourselves: would you give that

power to anyone for yourself?

Secondly, there was no guarantee of the level of care

support or the proven approach that would have worked

with Chris. We had no choice of carers or therapists

or the community access he was used to.

Chris wept when he knew he couldn't take his carers with

him. We learnt then, if you don't have control over

some of the funding, then you really have no control

over anything.

With Chris, we made the decision to stay at the Brunswick

nursing home with his individual support package, which

enables this choice and support and control in his

life.

I must say, aged care often gets a bad press, but I've met

the most amazing people over these 18 years, older

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Australians in aged care. So I think we should not

demonise it.

It was very disappointing, and some in the disability

sector were quite critical of us, but Chris and we have

moved on and he is now much more engaged and connected

than ever. As one friend says, "Nolesy, you're better

connected than all of us."

One of the main goals of the NDIS and NDIA is to support

people with disability and their families to lead

ordinary lives and to maximise interdependence, in

Chris's situation, and social and economic

participation.

Rehabilitation as such is regarded as a health

responsibility, but in this model I would like to point

out that a rehabilitative approach is integrated in all

aspects of life and is a reasonable and necessary

support.

The partnership philosophy has five guiding principles: a

person with ABI is an interdependent social being

participating in society; communication is central to

participation as a social being and is vital between

all those involved; an integrated approach to care and

rehab approach is required with ongoing learning; this

therapeutic approach takes place in an environment that

is both long term and unpredictable, requiring

continuity of care and openness to change; and the

approach requires trusting relationships and a flexible

environment.

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It is a particular approach which focuses on relationship

and interactions with the person and the glue that

binds it together is the culture of partnership and an

attitude of working with the person rather than for the

person.

The socio-medical model in practice: this provides the

framework really -- there are some slides there. Just

that Slow to Recover, which is a pleasurable thing as

well, it's not just rehab as such for rehab's sake.

This model of partnership promotes language that removes

barriers, creates shared understanding and fosters new

learning. It includes those who speak and those who

can't and it includes professionals and

nonprofessionals, service providers, families, friends

and wider society.

Specialised medical, nursing and allied health: the model's

allied health program is provided in the context of the

World Health Organisation's guidelines regarding

community based rehab. This type of practice places

the person at the centre, acknowledging their skills

and cultural values, identifying the issues impacting

on their performance, which is significant, and

addressing the environmental factors that affect their

participation.

How does it work? The basis of partnership -- this is the

basis really and is used at all levels of care and

support -- slow and gentle movement and procedural

learning with communication, attention to responses,

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that is basic to all the programs and activities,

engagement, participation, Chris's and others days and

nights.

It is now backed up by neuroscience telling us that the

brain can make new connections. We all have old

learned processes we take for granted. In an enriched

environment, using this procedural method/process to

tap into those learned patterns of movement enables the

brain and the person to reconnect and make new neural

connections and pathways.

It is also very respectful to the person, enabling them to

choose, direct and participate in their own care and

life. But, as with us all, life is dynamic and never

static, so the routines are adapted as required.

I'm going to give you an example. I would like you to

think back to how you had your shower this morning.

Most of us have a routine we don't even have to think

about. We know what water temperature we like, we

start at the same place, we usually use the same

sequence of where we wash next, and finish at the same

place.

Now close your eyes and imagine being unable to speak, move

or see, and carers showering you, some you know, some

you don't, all different, in a different way, starting

and finishing at different places, and hurrying because

they are task driven. You have got no idea what to

expect next, so fear and confusion, pain and anxiety,

make it an awful experience, fearful and terrible,

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rather than a pleasurable and routine. You can't

participate because you don't know what's coming next.

So if you have an ABI with terrible painful resultant

spasticity spasms, your body tends to stiffen up,

making it harder for you and at times impossible for

the carer showering you. Chris used to be like a

surfboard.

Firstly, we need to know and discover how the young person

communicates, what relaxes them, calms them, how they

express fear and panic, and then get into a procedure

and check it out with them, tell them what is to

happen, move slowly, so that they have time to let go

and participate, and get their okay. The new fast is

slow.

Training a carer in a procedural way is essential for the

young person to trust, and it then becomes a

pleasurable experience.

That slow and gentle movement procedural learning,

communication and attention to responses is basic to

all support and activity, engagement and participation,

Chris's days and nights. It is at the heart of this

approach.

This simple and underpinning example and principle of

attending to nonverbal communication, getting the

person's okay, slow and gentle movement, is just

foundational. Carers need to be trained well, stable

and know the young person, and they need to feel valued

and part of a team.

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In our case, carers have been with Chris from three months

to 18 years. As well as being able to read his

nonverbal communication, we all converse, watching his

face and include and engage in any conversations.

If you take a note of those three sequence photos of Chris

with his cousin, there were 10 in that series, you will

see that they both have the same facial expressions in

response to what's being said in that environment.

I learned the value of sequence photos after I saw

that.

Across the team we use a variety of communication means, a

daily diary, a visitors' book, carers' communication.

We have got a tablet, often used by therapists to

record movements for carers, contacts lists, photos on

his wall, speakerphone, which he loves to make contact

with friends.

The therapists are all involved in the ongoing supervision

and training of carers and nursing home staff. Once

carers are trained, they work on their own. Our

therapists work in partnership. Some therapists come

in and do their bit and really don't train and help

carers to carry on very well. Again, we choose who

works with Chris.

We developed a getting on with life, a two-page synthesis

of Chris's goals and aspirations, a couple of years

ago. When I say we developed it, we gathered up all

the goals and synthesised them, and that's a constant

reference point.

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Equipment is essential. I think it is important not just

to get equipment for the sake of it. We have always

been very careful to identify what we want to achieve

and how we are going to use it, what's it for.

One example, after identifying what Chris needed to enhance

his participation in lifestyle, it took three years to

scope and find and customise Chris's present power

wheelchair. It is mid-wheel drive with a small turning

circle, vital in small spaces. It needed to be

customised to enable not only seating for comfort and

pressure care but a headrest and correct position for

swallowing and eating, and a tilting space and recline,

which means he can now have much longer time and

outings in the community. Previously, he was limited

to three or four hours.

Then carers need to be educated in transfers, mobilising,

caring for the chair, and all the stuff about getting

people out -- negotiating non-friendly footpaths and

surfaces, transferring it to his bus, driving the bus,

safety and emergency procedures.

So all three therapists were involved at some stage.

Like all of us, young people with ABI, even though they may

not be able to speak, have a basic human need to feel

loved and valued and to feel safe, not just to be told

they are safe and loved. That's very different.

A US expert in this field, Dr Tim Feeney, who spoke at the

ABI summit in 2013 -- some of you may have heard him --

says foundational is to find what gives people meaning.

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Many of us can say that for ourselves but for a person who

can't speak for themselves, that's really important.

That's at the heart of all this model is about,

discovering and understanding what the person wants and

needs and how we can facilitate it. It is an ongoing

process which needs to be reviewed and used as a

reference point.

One significant thing: in keeping with his personality over

recent years, we have noticed Chris gets much greater

satisfaction in doing his bit, in giving back. He is

never probably going to be employed but he does

generate economic activity. I am going to give

you some examples.

The Meredith Music Festival, of which Chris was a founder,

and his greater involvement in meetings. He opens the

Golden Plains Music Festival, which is the second

festival on our place, with his long blink for "Yes".

He's created a concertisation. There's about 12,000 or

13,000 at Meredith and 10,000 young people at Golden

Plains. He opens Golden Plains with his long blink.

I'll tell you in a minute, Chris had been very unwell, a

lot of people knew that, so the radio announcer, who

was the MC for the opening, which takes about two

minutes, said that people were tearing up before he

even got on stage, they were so pleased to have him

back.

Something else we have achieved there -- it's a farm, so it

has got its limitations -- better access and facilities

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for people like Chris to attend. There is a day ticket

and a companion card and a bus park and a medical

centre with a bed available if people need a change.

Chris initiated in the early days, we could see the local

community organisation was struggling for funding and

so we invited them to get together to cater in what was

called the Meredith Community Tucker Tent. Now it's no

longer a tent but there are 300 volunteers from town

groups. They raise money for their organisations, and

several of those organisations are still viable because

of that. So there's that sense of building an

inclusive community.

Meredith community events: Chris was an ex-fire brigade

member and a co-founder of the music festival and he

attended the Meredith Fire Brigade centenary dinner 18

months ago.

The music festival supports the local brigade and money

raised from that festival has enabled the fire brigade

to buy a new fire truck for the district, which is no

mean feat.

Chris attends St Pat's College, Ballarat, end of semester

assemblies for the presentation of the Chris Nolan

Awards, academic awards to the top 15 per cent of

students in years 7 to 12, which is assessed across 40

categories. It was named after Chris several years ago

for his pre and our post injury achievements for

himself and others like him. It is an amazing two-way

benefit for both the school community and Chris. There

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were 2,000 in the assembly the last time we went.

Movember, the last three years, he loves the lark and the

comments on the mo. This is a different style this

year, thanks to his carer, who is present. Very proud

that he has raised over $4,000 in three years for men's

health.

He attends a lot of events like this and he is a living

example of what is working well, in contrast to many

others who we know are very isolated. I think the

photos say it.

He was very proud last year, he has won the footy tipping

for two or three years -- he's a Richmond supporter,

for those of you who are Melbourne based -- and

I decided to look in The Age and see how the other

tipsters were going, midway through the season. He

finished one higher than the top tipster in The Age and

he was stoked.

Medical gains, I won't go into this much, but just to say,

after needing anaesthetic and day procedures and

overnight in some cases for dental checks and cleans in

those early years, with the work that's been done and

Chris being able to open and control his mouth, he now

has regular six-monthly checks in the surgery, like all

of us.

In 2001, we were told not to feed him. We knew how much he

loved food, so we kept giving him tastes, and we had a

really good speechie, who was prepared to go slowly.

The next video fluoroscopy, a special x-ray of his

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swallow, was taken in 2007 and showed remarkable

improvement. By 2014, Chris was eating two meals

daily, replacing tube feeding.

Chris still has his flat days -- abnormal levels of fatigue

are part of ABI -- but he teaches us to take him as we

find him, and would that we all could enjoy that

acceptance.

He is very dependent on those who know him to notice even

very small changes. He is having many best-evers,

ranging from responsiveness, capacity to engage and

being involved, he hates to be left out, communication

and decision making, for example, using his long blink

for "Yes" and grin, better and more definite.

Thumb up for "Yes" on good days, vocalising and trying to

talk with some "Yeahs" and "Nahs". Grinding his teeth

indicates something is wrong, and do something about

it, and it stops with identification and addressing of

the issue, and even discovering what the problem is and

being unable to address it.

But we don't always get it right. In 2011, Chris was very

unwell with a rash, increased spasticity and severe

episodic pain and he was in hospital for two weeks

without any diagnosis. He taught us and clinicians

something about the diagnosis of people who are

nonverbal. He had scabies, which was finally diagnosed

by the urologist, all over him. None of us had asked

him if he was itchy, and he couldn't scratch. The

dermatologist said it would have been like seven

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degrees of hell.

Adaptation and flexibility is essential. Processes and

protocols and lists have been developed and reviewed,

so we don't have to reinvent the wheel. One example is

his going home to the farm list, so there is a list for

the carer to pack and a list for the nursing home.

The red bag goes everywhere he goes. It comprises medical

information and contacts, his advanced care wishes,

with about 12 friends' contact details. His recent

emergency admission to hospital -- it has his med

charts, all of that -- it was just praised so loudly by

doctors. One of them said to me, "Look, ask them to

photocopy this, but don't give it to them, for God

sake, because you'll never get it back."

Adaptation has involved two nursing homes, farm and

community settings, and acute admissions in two

hospitals in the past year.

In May 2014, Chris had a very sudden emergency admission

with a small bowel obstruction from adhesion, surgery

in Saint V's, ICU, then infection. Then he was five

days back at the nursing home, very fragile, then he

had a sudden sepsis episode and a MICA ambulance to

Royal Melbourne ICU and again very ill. Those people

who have a regular hospital know it's a nightmare to go

to another hospital.

Acute nurses have little idea how to look after someone

like Chris, so Chris's carers agreed to be rostered on

at the hospital. It was really an excellent bridging

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of the divide of health and disability. The acute

looked after the clinical areas and Chris's carers were

able to interpret his communication, manage his

positioning, often with assistance training from our

therapists, keep up the slow and gentle movement, and

assist with diagnosis with doctors.

At both hospitals, doctors and nurses praised the

collaborative alliance. It was very much a two-way

learning.

He came out of ICU at Royal Melbourne with a red flag. He

was getting really well by 17 November, when he had

another emergency admission and finished up seven weeks

very unwell in St Vincent's, with very serious

infection. He had his Baclofen pump removed, which

gives him a slow release of Baclofen to minimise

spasticity, and he had terrible Baclofen withdrawals,

spasticity. I don't know how he survived it, really,

none of us do. We were traumatised, and we didn't have

to endure it. Then he got a hospital resistant

pneumonia.

One of the nurses there said he had the greatest physical,

mental and spiritual strength of anyone she has ever

nursed, and I think he's made it obvious he wants to

live life as he is.

Then we had the real adaptation, after he came back to the

nursing home in January, with the increased dose of

Baclofen and very fragile. Everything had to be

reviewed, revised and documented. We set up a 24-hour

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chart, timeline, with times for everything, positions,

and the doctors adapted that as we went.

He got to the St Pat's, Ballarat, assembly in February

through sheer willpower and he got to the farm, for the

first time in five months, to open the Golden Plains

Festival in March.

I won't go into advanced care wishes.

I hope I have demonstrate over the 18 years, using Chris

and the eight others and one at Brunswick, the approach

that has worked so well.

I think it illustrates that, even though Chris's capacity

could be viewed as, and is, very impaired, this

approach clearly demonstrates that his functioning and

interdependence, social and economic participation, and

if you like his performance in society, is exceptional,

given his limitations. This approach and the support

he receives on all levels removes and minimises the

limitations on functioning and enables him to survive

and thrive and choose and make significant

contributions. So he and others like him need

reasonable and necessary supports which include

necessary health and therapeutic supports.

APPLAUSE

Suzanne Colbert: Thank you very much, Mary. I am sure we have all got

many questions for you, but we might save our questions until the end of

this section.

I would like to now introduce Dr John Chesterman, manager of policy and

education Office of the Public Advocate, who is going to talk to us about

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people with cognitive impairments in the NDIS.

John is a trained lawyer and prior to joining OPA he lectured in politics for

more than eight years at the University of Melbourne. He has written a

number of books including co-author of "Politics of Human Rights in

Australia", which could be very interesting.

In 2013, John travelled as a Churchill Fellow to the US, Canada and the

UK, where he examined a variety of adult protection systems.

Thank you, John.

APPLAUSE

John Chesterman: Thank you. Good afternoon, everybody.

I would like to acknowledge the traditional owners of the Wurundjeri land

and acknowledge the elders past and present of indigenous people and

acknowledge the expertise that exists in the room.

I am fully aware when I address people like this that the room is full of a

range of experiences that are more significant than mine in some areas

and I am conscious that expertise is there. I hope that you won't find that

I'm telling you things you already know.

I also want to acknowledge Mary's very powerful presentation, for sharing

Chris's and her family's fascinating story about decision-making, social

inclusion, some of the topics which I will touch on today in my presentation.

Thank you, Mary.

A couple of introductory slides. I think I should be an aerobics instructor,

to get everybody up and moving, as I am between you and afternoon tea.

I can skate over the initial slides, because Stephanie and Sue talked about

where the NDIS is at, so I won't spend much time on those matters.

The Office of the Public Advocate is an independent statutory authority

with a number of key functions. We have comparable bodies in each state

and territory, though we are the only advocacy in Western Australia, South

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Australia and Victoria. There are public guardians elsewhere, by and

large, and a public advocate in the ACT as well. In fact, I can't stay after

afternoon tea because I'm going to a meeting of all those groups later this

evening.

We are the adult guardian of last resort. We also conduct investigations

on behalf of our Guardianship Tribunal, which is the guardianship list at

VCAT, the Victorian Civil and Administrative Tribunal.

Unusually for a statutory authority, we have five volunteer programs and,

behind the State Emergency Service and the Country Fire Authority, we

have probably the most volunteers of any statutory authority. We have

community visitors who visit a range of disability settings, over 300 of

them. We have got over 200 independent third persons who sit in on

police interviews when police are interviewing a person with an apparent

cognitive impairment. We have got slightly fewer than 100 community

guardians. We have got a very small but new supported decision-making

program with 17 volunteer decision makers, or decision-making

supporters, as we call them, 17 participants, and we also have corrections

independent support officers who sit in on prison disciplinary hearings. All

up, we have around 900 volunteers.

We conduct advocacy, both individual and systemic. My role is the

systemic advocacy, which I'll be talking to you about in a moment. We

have got an advice service that handles over 13,000 calls a year and we

deliver around 200 community presentations each year.

So that's the Office of the Public Advocate.

I am talking to you today about points 2 and 3: who is making NDIS

decisions when participants have cognitive impairments, and I want also to

talk to you about the transition to a nationally consistent safeguards

framework, that we heard Senator Fifield talk about today on video, and

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Susan Ryan and Stephanie talked about the framework. I will take you

through the discussion paper that has been put out recently, where

submissions have been called for. So it is quite useful that the other

speakers have presaged this discussion in some way, but I will take you

through some of the detail in a minute.

We know about the launch of the NDIS, the pilot schemes that are in

place. We know that from the middle of 2016 it will be rolled out nationally,

until the middle of 2019. I can skate over that material.

As Steph said, we have had 11,000 participants with approved plans so

far. We had some debate about this, but the average annualised cost, if

you exclude the residents of two large residential institutions -- in New

South Wales, Stockton, and in Victoria, in Barwon, at Colanda -- then the

average annualised package cost is around $35,000.

I want to point out, too, the distribution shows a small number of people

with high costs, so there is this quote in the periodic report to the Disability

Reform Council which says 69 per cent of participants have an annualised

package cost below $30,000, so it is a small number of people who have

very high annualised costs.

In terms of the primary disability of participants, I want to show a slide that

looks at the breakdown of the primary disability of participants and then

show you another slide where I have highlighted some of the disabilities.

The ones I have highlighted are autism and related disorders,

developmental delay, global developmental delay, intellectual disability and

other intellectual and learning disability. That slide is not broken down to

show people who have decision-making disability, and me highlighting

those groups, it's a very rough guide.

The groups I have highlighted come out to about 63 per cent of the

participants so far. Of course, not all the people in those groups need

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decision-making support. In addition, there are people in other groups who

do need decision-making support. But I want to make the point there are

significant number of people who are participants in the scheme who

require at least some assistance in making decisions, such as

NDIS-related decisions about things they want and need funding for.

When the Productivity Commission released its report that led to the

development of the scheme, the commission predicted that around half of

the participants would need assistance with daily care needs,

communication and/or mobility, they thought about half, 220,000 of the

411,000, would need that assistance.

If we look at what's been funded so far -- I won't take you through the

detail, we don't have the time for that -- the point to make is that prediction

has been borne out, that a significant number of people are receiving

assistance with mobility and self-care. They are the two items I have

highlighted in that slide.

In terms of the Office of the Public Advocate's involvement, we have had

our volunteer community visitors visiting in the Barwon launch site, we

have that expertise. We have had many meetings with the National

Disability Insurance Agency, myself with Stephanie and a range of her

staff. As Stephanie said, we have acted as advocates for 28 participants

in shared supported accommodation and for 31 participants in the

residential institution at Colanda, which is the only institution in the launch

site; we have been guardian for a small number of participants; and we

have released a discussion paper on guardianship and the NDIS, which

I will quote from in a minute.

We have also developed a decision-making tree in relation to supported

and substitute decision-making in the NDIS. You will understand why

there is a bit of a need for this guide when the complexity of how substitute

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decision-making operates at the moment in Australia is explained.

We have also begun an evaluation of the advocacy that we have been

doing.

The question I want to look at for most of this talk, the first part of the talk:

who is making NDIS decisions when participants have cognitive

impairments?

I thought I would start by mentioning the Convention on the Rights of

Persons with Disabilities. This convention was mentioned by Susan Ryan

earlier today. I didn't catch Susan. Susan launched a book of mine in

2009 and I haven't seen her since then, I meant to catch her but I missed

her. I don't think she would vaguely remember who I am, because I only

met her on the day and the book was co-authored, but anyway.

Susan mentioned the convention, as of course she would. One of the key

principles underpinning the convention concerns supported

decision-making, which can be defined as the requirement that people with

disabilities be supported to play as great a role as possible in making and

implementing the decisions that affect them.

There is reference in the NDIS Act to supported decision-making, there is

a reference to the rules that may require nominees to support decision

making by the participant personally, and the rules provide that

appointments of nominees should occur only when it is not possible for

participants to be assisted to make decisions for themselves.

Our view at the Office of the Public Advocate is certainly that the NDIS Act

should describe a greater description of supported decision-making and

should push for this more than it currently does.

I thought I would show you, talking about the Convention on the Rights of

Persons with Disabilities, one of the things that the convention does is talk

about not only how people should be supported to make decisions but

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raises a question of should anyone ever be appointed to make decisions

for somebody.

There is a bit of a debate going on in the international human rights realm

about this, whether guardianship, for instance, is consistent with the

convention. Here in Australia, we have said we believe it is.

I want to show you this slide, which is the main treaty monitoring

committee, the UN committee on the rights of persons with disabilities,

which released a comment last year which said that states' parties --

Australia is a signatory and we have ratified this -- our obligation to replace

substitute decision-making regimes by supported decision making requires

the abolition of substitute decision-making regimes and the development of

supported decision-making alternatives. What they are saying is there

should be no guardianship, no involuntary mental health treatment as well,

in order for countries to be compliant with that convention.

That is a debate -- the view of that committee was disagreed with by the

Australian government and all the state and territory Governments and by

many countries throughout the world. But I wanted to let you know the

human rights language is increasingly pushing for people with disability to

make their own decisions or be supported to make their own decisions,

and at one extreme there is an argument that people should never make

decisions for people with disability. So there is that debate that is out

there.

We know the underlying philosophy of the NDIS is one of consumer

choice. Not only that, the NDIS participation gives rise to new choices.

So, how are people being supported to make choices and to what extent

are substitute decision makers, including nominees under federal law and

guardians and administrators under state and territory laws, being

appointed in order to enable NDIS choices to be made?

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In answering those questions, we first have to acknowledge that

98 per cent of the support for people with decision-making disabilities is

provided by families and carers, who do this in -- it's kind of unsatisfactory

language, but we talk about that support being provided informally, not

through any formal appointment as a decision maker or a decision-making

supporter. I put that up as a first point to be made in answering those

questions.

In terms of the complexity I talked about before, when I said we have

developed a decision-making tree, of course, we live in a federation. At

state and territory level, the substitute decision makers can be appointed

by guardianship tribunals, so we are the guardian of last resort; you have

administrators appointed by guardianship tribunals. In Victoria you have

got the state trustees as a last resort guardian and there are other trustee

companies that can be appointed. Other states have the public trustee, so

they are administrators. So they are substitute decision-making

possibilities that exist at state level.

We also have enduring powers of attorney at state level, by which

individuals can appoint their own substitute decision maker, should they

lose capacity to make decisions themselves. That is at the state level.

Now, of course, with the national NDIS scheme, we have the possibility of

nominees being appointed. Nominees can be appointed by the relevant

CEOs of the launch sites and nominees have a substitute decision-making

role and they can make NDIS decisions for participants.

One of the key questions we have is: are nominees being appointed? The

short answer is they are not. Certainly in Victoria there is no large usage

of the nominee provisions.

I asked the question before of Sue, about Tasmania and the Northern

Territory, there is no large usage of nominees there either, so we know

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that is not something that is being taken up.

We know in Victoria there has not been a rush of guardianship

applications. In New South Wales, however, there were over 100

guardianship applications up until around October last year. So in different

jurisdictions things are operating in a different manner.

One of the points that I will make in a minute is that we need some clarity

around when substitute decision-making might be required for NDIS

participation. There really isn't much clarity around that point at the

moment.

We would answer this question about when should a substitute decision

maker be appointed to an NDIS participant in this way: I want to make the

point we don't think there should be routine appointment of guardians, it is

not in anyone's interest and not particularly cost effective. Guardianship

should be the last remaining option before it is utilised.

When should a substitute decision maker be appointed? We say when

participation in the NDIS presents a choice about a significant matter that

the person is unable with support to make themselves and where there is

no less restrictive alternative to the appointment. An example I would give

would be a participant with a significant cognitive impairment who has no

family or other informal supporters, that person has the opportunity to

move to new accommodation and lacks the capacity to make a decision

about moving; in that situation you might think about either the

appointment of a nominee or an application for guardianship, and we

would need to work out which of those options you would select, and that

is what our decision-making tree attempts to do.

The point to be made about this topic is that people with disability should

be supported where at all possible to make and implement their own

decisions. That is the underlying philosophy.

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I know that in the launch sites, where people don't have informal

supporters and family members around them -- as Stephanie said this

morning, they are struggling to find people in the community who might

play that role -- and we have a pilot supported decision-making scheme.

The novel thing about our scheme is that we are putting strangers --

volunteers with our office, but strangers to individuals with disability -- in

touch with the individuals who are isolated and assisting them to make

decisions. We would like to get into this in a bigger way in the NDIS and

I think there is the capacity for that to happen. So you not only need the

readiness from the NDIA to engage those volunteer supporters, you need

the volunteer supporters as well. We at least have large numbers of them,

thankfully. That's a bit of a watch this space.

This is a bit technical, I won't go through this in any detail. The

guardianship and the NDIS paper looks at the way -- unfortunately, our

federal substitute decision maker nominees, that role doesn't sit hand in

glove with state based guardians and/or administrators. There is an

unevenness there. The analogy I would draw is the rail gauges that don't

meet on the state borders. Some clarity is needed there and that is

something that we think can be done through amendment of the NDIS Act.

I won't go through that.

Also on this topic of how guardians and administrators at state levels relate

to nominees, I thought I would let you know that the Australian Law Reform

Commission last year released a report that looked at this topic, amongst

other things. It release a report on equality, capacity and disability in

Commonwealth laws. It made a range of recommendations and

suggested that supported decision-making be given greater focus in the

NDIS, something we agree with, and also talked about the need to amend

the NDIS Act to provide for the role of supporters and to provide for the

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role of representatives, which it prefers to nominees, and I think that is a

good point.

It also makes the point in one of its recommendations that even when you

have someone substituting their own decision-making for an individual,

even when you get to that extreme, they should still be guided by the

rights, will and preferences of the individual; in other words, what the

person themselves would have done if they had been making that decision

themselves. So you look at their past behaviour, what would they have

done in this situation, and be guided by that. That is their recommendation

and, again, that is something we would strongly agree with.

Let me move now to look at the transition to a nationally consistent

safeguards framework.

The point to make initially is the various Council of Australian Governments

agreements with the launch sites set out that in the longer term there

would be a move to a nationally consistent risk based quality assurance

approach but for the time being the state based protections would

continue.

In Victoria, those state based safeguards include our volunteer community

visitors; we have got the state based Disability Services Commissioner; we

have the senior practitioner, with whom behaviour support plans are

lodged when restrictive practices are being used; we have got protections

in a range of other pieces of legislation, including we are one of only two

jurisdictions in Australia with a Bill of Rights, the other being the ACT.

What should be contained in a nationally consistent risk based quality

assurance approach?

This is a challenge in a country like Australia because you don't want lower

safeguards in any jurisdiction. Certainly, here in Victoria, we think our

safeguards are reasonably good, compared to other jurisdictions in

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Australia. We would hate to think that moving to national consistency

meant lowering your state safeguards, so we should maintain at a

minimum, and ideally improve, current protections.

National consistency is not easily achieved when there are significantly

different protections throughout the country. A question I would raise is:

does national consistency require all jurisdictions to create the equivalent

of our senior practitioner? Because the senior practitioner doesn't exist in

most other jurisdictions; there is one in South Australia, but most

jurisdictions don't have one.

Or does national consistency mean something broader, such as a

requirement that restrictive interventions be authorised by an external

agency? Would that be enough to achieve national consistency? This is a

real challenge in moving to a nationally consistent model.

We have sought five key things in relation to people with cognitive

impairment and mental ill health. I emphasise, that is the group of people

I am talking about, that is the group of people with whom we work.

We have sought five things as we move to a nationally consistent

safeguards paperwork:

Firstly, personal choice should be maximised and supported and we only

should use guardianship as a last resort, not routinely;

Advocacy support is crucial;

We need a clear complaints mechanism;

We need on-site monitoring, which I will come back to in a minute; and

We need the capacity for an independent statutory authority to conduct

investigations in situations of concern. Again, I'll come back to that.

The discussion paper that was released in February this year for the

Disability Reform Council asks a number of questions, and the consultation

period is open until the end of next month. I would encourage people who

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don't already know about this and who see something that I refer to in the

next couple of minutes to make a submission, even if it is just on one

particular part of the discussion paper. The discussion paper itself is 120

pages. It sounds long but it could easily have been 1,000 pages, given the

breadth of things it covers. But I do encourage people to make a

submission if they have got strong feelings about any of the things I cover;

and, of course, I am only covering a few things.

After the consultation period closes the decision will be made by COAG

ministers. Of course, bear in mind that where we are talking about national

consistency, if the agreement by COAG ministers is that each state does

X, Y and Z, then of course it is up to each state parliament to then enact X,

Y and Z, if it requires legislation. As we know, with our current Senate,

nationally that is never guaranteed, so that is something the COAG

ministers will be bearing in mind when they talk about the need for national

consistency.

There are five elements of the proposed discussion paper: NDIA provider

registration; systems for handling complaints; ensuring staff are safe to

work with participants; safeguards for participants; reducing and

eliminating restrictive practices. I will deal briefly with items 1, 2, 3 and 5. I

won't deal with item 4; please go to the discussion paper if you would like

to know more about item 4.

In terms of provider registration, there are four options, and the paper

literally says, "Which of these do you think would be better?" Basic

registration requirements are just to fill in a form -- very simple. Additional

registration conditions that attach to the provision of particular supports;

should there be mandated independent quality evaluation requirements or

indeed, at the most extreme, should there be mandated participation in an

external quality assurance system?

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I think many people will be plumping for either 3 or 4, the third or fourth

one, which of those -- I guess service providers would like it to be quite

simple. Of course, the argument for simplicity is that that will bring more

providers in and greater competition, and ideally that will lead to better

service. Of course, the argument against that is: yes, but what about

protecting people who are often in inherently vulnerable situations.

In terms of complaints, we will be hearing -- unfortunately, I won't be here,

I have to go to Canberra -- after afternoon tea from Ron McCallum, who is

much better placed than I am to talk about complaints.

One thing to bear in mind when we are talking about complaints, there are

complaints about NDIA related decisions, about participation, what is in a

person's plan, then there are complaints about service provision. Those

two things sound quite different but they can become a bit merged when,

for instance, you talk about a service provider who is providing a poor

service but has been contracted by the agency and has long been

providing a bad service and the agency knows it is a bad service. Who is

the complaint against there? Those two things can be merged.

At the moment, with the complaints mechanism about the NDIA, you would

go to the NDIA, then through an internal mechanism and then to the

Administrative Appeals Tribunal. For service provision in Victoria you go to

the Disability Services Commissioner. The question is: what happens

when we move to national consistency? Should there be an equivalent of

the Disability Services Commissioner in other jurisdictions? Should it be

someone like an ombudsman? Which it is in New South Wales. There is

a slight difference there, an ombudsman has more own motion powers; the

Disability Services Commissioner tends to be more reactive to complaints

that come in. That's a debate to be had.

These questions are raised in the consultation paper. How important is it

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to have a complaints system that is independent from providers of

supports? Should a complaints system apply only to disability related

supports or to all funded supports or to all disability services, regardless of

whether they are funded by the NDIS? That is a big regulatory question.

What powers should a complaints body have? Should it have own motion

investigate powers?

Also under complaints, should there be a community visitors scheme in the

NDIS and, if so, what should their role be? As I've said, we run the

community visitors scheme in Victoria. We do not see the community

visitors scheme as a complaints mechanism, it is more an on-site

monitoring, and that is a point we will make in our submission.

Some additional considerations when we are talking about complaints: it is

one thing to have a complaints scheme, and we have already seen in one

of the slides that Steph showed earlier, there has been relatively low usage

of the Administrative Appeals Tribunal, only about 22 complaints via that

that have got as far as the AAT in Victoria as of the date on the slide

Stephanie showed.

We need to encourage people that they can complain and tell them how to

complain. In Victoria, the Disability Services Commissioner has been quite

successful in the core message that it is okay to complain, and this would

be key to the roll out of any national complaints scheme.

Another obvious point to make about complaints is that usual market

protection mechanisms, including complaints and survey based

monitoring, do not apply in the same way to the provision of services to

people with cognitive impairment, and we would say monitoring general

wellbeing can only be done by visiting the person.

The Productivity Commission called for community visitors to be one

aspect of the monitoring provided by the NDIA. They like the Victorian

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model because we use volunteers and our volunteers provide an annual

report to parliament, which provides a headache for the State government

every year when it is reported to Parliament, but that is what the

Productivity Commission likes about our scheme. We are independent of

service providers and our visitors -- sorry, I'm slipping between "we" and

"they"; I'm a community visitor as well as being an OPA employee -- we

visit regularly and get to know individuals and communication styles, so

they are the arguments for having community visitors as one of the

monitoring mechanisms.

It gets complex, of course, in that community visitors, where there is

legislation around what community visitors can do, as there is in Victoria,

specifies the kinds of places people can go and visit.

What do we do when we move to the NDIS and there are a broader range

of accommodation options that people are choosing to live in? Because

on the one hand, if community visitors come knocking, why shouldn't a

person with disability be able to say, "Get lost, I don't want you visiting"?

I can say that to somebody who doorknocks me in my own home. There is

that side of things. There is also, what happens if there is a house of

people with significant cognitive impairments and there is no external

monitoring of what's going on there, don't we need a scheme that provides

that monitoring?

That's a balance to be weighed up. It becomes more complex as we look

at the range of accommodation options that will be possible when the full

roll out of the NDIS occurs.

That is a complexity. We have already thought about this and drawn on

what we do in Victoria and suggested that you might have a rule that

community visitors visit when NDIS funds are used for accommodation

purposes and the provision of accommodation and support are connected

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and both are managed by or on behalf of a disability service provider. That

would be one way of addressing it. But more thought needs to be put into

that. First of all, we would need to have COAG ministers agree that

community visitors are part of the safeguarding scheme.

Ensuring staff are safe to work with participants. In Victoria, incidentally,

since September last year we had a disability worker exclusion scheme

apply. It is like a negative register. Where a person has had an

investigation, where a worker has been stood down for a behaviour posing

a risk to the health, safety or welfare of a person with disability, then the

service provider is required to tell the Department of Health and Human

Services and the director of the disability worker exclusion scheme makes

a decision about whether to list that person's name, which would mean

they can't work in disability services.

If we move to looking at this at a national level, ensuring staff are safe to

work with participants, who should make the decision about whether

employees are safe to work with people with disability? How much

information about a person's history is required to ensure they are safe to

work with people with disability?

They give four options. The lowest level is risk management by

employees; in other words, leave it to employees to make the call. The

requirement for referee checks for all roles and police checks for certain

employee roles would be the next level up. Do you require a working with

vulnerable people clearance? Should we be requiring that at the national

level? And should we have a negative register, a barred persons list?

Of course, one of the issues, now that we are looking at things at a

national level, we don't particularly want someone who is barred from

working in disability services working in aged care. So how do we have

that crossover? That's an argument perhaps for the vulnerable people

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clearance, rather than just having it being disability specific. That is

something to perhaps think about that, and we will certainly be addressing

this in our submission.

The topic of reducing restrictive practices: who should decide when

restrictive practices can be used? This is a challenge. When I say we are

putting in a submission, we are also putting in a submission for all of the

public guardians and all of the state public trustees and all of the

guardianship tribunals, so we are writing on behalf of the Australian

Guardianship Administration Council.

There are uneven practices in Australia when it comes to restrictive

practice authorisation processes. In some jurisdictions, for instance, in

Queensland, guardians consent to restrictive practices; here in Victoria,

guardians don't consent to restrictive practices. We have the senior

practitioner with whom behaviour support plans must be lodged before

disability service providers can use restrictive practices.

The four options put in the consultation paper are, at the lowest level, a

voluntary code of practice; substitute decision makers must be formally

appointed guardians, which is the Queensland situation; providers would

be authorised to make decisions under specific conditions only; or, more

like our senior practitioner role in Victoria, restrictive practices can only be

authorised by an independent decision maker.

Again, that is a very important matter, in our view, as to the kind of

nationally consistent safeguarding framework that is going to exist.

I will just close by making the point that there are a number of things that

aren't there in the consultation paper. There's no detailed discussion in the

safeguarding framework paper about supported and substitute

decision-making. The paper refers to supported and substitute

decision-making and guardians and guardianship tribunals as being a

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safeguard that is external to the NDIS.

We would make the point that the NDIS, which is all about consumer

choice, which essentially is all about decisions, has to do a bit better than

that and we need to be clear about what the agency will do to support

people to make their own decisions and when the agency will look to

outsiders to make decisions for people.

At the moment, our kind of take on the involvement, when people become

participants in the scheme and have their plan agreed to, that is far less of

a contractual process, where the participant and the agency agree, and

much more a process where the agency determines what will be in the

plan, informed by what the participant says. So it is less contractual and

more of an informing process.

We think there needs to be some greater clarity around when the NDIS

requires participants to be making their own decisions and when support is

needed for those decisions to be made. So that is something that we think

needs to be in the safeguarding framework.

Something also that needs to be there is advocacy support. By this I mean

not just funded advocacy support under a person's plan but broader

advocacy support to enable the broader checking of the extent to which

the system as a whole is supporting vulnerable people. We think that

should be part of the safeguarding framework.

In terms of investigating situations of concern, we think there needs to be

greater power, in our case of the Office of the Public Advocate, to conduct

investigations where there are situations of concern but there is no obvious

criminality, for instance, or no obvious health related matter.

I'll just rush to this point. We have had a Victorian Law Reform

Commission report a couple of years ago that made this very

recommendation, that our office should have broader investigation powers.

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Again, that is something that we think should be in the national

safeguarding for the NDIS because there will be people who slip through

the cracks when it comes to NDIS participation, especially when the full

scheme is rolled out, and we need to make sure there is an agency that

can be called to go and see if there is a vulnerable person who needs

some assistance who currently is not receiving it. That is why that

recommendation will be there in our submission.

I know I'm over time, I'm stopping afternoon tea.

Just to conclude, it is important for us to think about how the consumer

choice philosophy that underpins the NDIS is working in practice for people

with cognitive impairment; how people are being supported to make

decisions; when are decisions, formally or even informally, being made for

rather than by participants?

We are at a critical time in the development of the national safeguarding

framework. The next six weeks is critical as people think about making

submissions in relation to that consultation paper.

I hope I've given you a flavour of the debate that exists around the various

safeguarding mechanisms that might be adopted, and I do encourage

people to make submissions. Thank you.

APPLAUSE

Suzanne Colbert: Maybe we could just take five minutes for any questions

for John or Mary.

I'm sure we can drink our tea in haste, so we have an opportunity to ask

any questions.

Ruth Chalk: Hello, Mary, I'm Ruth Chalk from Anglicare Tasmania.

Thank you very much for your very personal and informative story.

Could you please say a little bit about the selection process for new

support staff for Chris? Because it sounds as though you have had to

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bring in new people on to the team and I would like to know how you went

about that.

Mary Nolan: Over the years we've learned a lot.

We use three agencies at the moment. Sometimes carers -- in more

recent times, carers have been recommended by one of our own carers.

I have advertised in the local paper when the agencies couldn't do it, and

then had 50 phone calls, because I didn't phrase it very well, but did get

one really good carer out of that, and then asked an agency to employ.

The process is, whatever way they come in, we ask agencies, particularly

one who knows Chris very well, to suggest people. I sort of talk to them

and then they meet Chris and probably the care coordinator with me.

Then they go through a process of trial and the therapist comes in and

susses them out as well.

We spend a lot of -- I mean, we had one guy who we just

poured training in for six months, and he was no better

at the end of the six months. This was early days.

One of the key things we watch when they come in to Chris

is how they interact with him.

Did that help?

Ruth Chalk: Yes, thank you.

Anita Veivers: Hi, my name is Anita from ARC in Cairns.

I have a question for John. You were talking around the safeguards and

prevention of abuse and neglect of people with cognitive impairment.

In your recommendation, is that recommendation an investigative role for

people who are being supported by agencies or people living with their

families as well?

John Chesterman: Sorry, I'm hearing impaired. I got most of the question.

I want to say how great it has been getting the auto-text up, so I can look

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behind and see.

The investigative role, whether that would include going into private

homes?

Anita Veivers: Yes.

John Chesterman: Yes, it could, where there is a significant -- there would

be a whole process which you would have to go through, you couldn't just

barge in. You would have to in fact get a warrant, where the people didn't

want you to come in. But it certainly would extend to private homes, yes.

Anita Veivers: Thank you.

Suzanne Colbert: I can't see any more hands up for questions.

I think John and Mary really deserve another round of applause. Thank

you.

APPLAUSE

We can have some afternoon tea and come back at 4 o'clock to hear from

Professor Ron McCallum.

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Suzanne Colbert: In the interests of staying on time, I think we might

restart.

In order to get started, it is my great pleasure to introduce

Professor Emeritus Ron McCallum AO from the University of Sydney. Ron

is a former dean and emeritus professor, faculty of law, University of

Sydney. He has been blind since his birth. He was the first totally blind

person in Australia or New Zealand to be appointed as a full professor in

any field at any university.

He has served as an inaugural member of the UN Committee on the

Rights of Persons with Disabilities from 2009 to 2014 and was its

chairperson from 2010 to 2013. The function of this committee is to

monitor the implementation by ratifying countries of the UN Convention on

the Rights of Persons with Disabilities. He is a part-time member of the

Australian Administrative Appeals Tribunal and he serves in its general

division and in its NDIS division.

He was Senior Australian of the Year in 2011. He is married to Prof Mary

Crock and they have one daughter and two sons.

A big welcome for Prof Ron McCallum.

APPLAUSE.

Ron McCallum: Thank you very much for that kind introduction. We got to

know each other serving on the National People with Disability and Carer

Council. I think part of the reason for abolishing was it was going to lower

the percentage of women on government boards, I think that was the

secret plot, and disabled people on government boards.

Thank you for reminding me I was a Senior Australian in 2011. The glow

wore off after about three hours, when I heard one of our adult sons on the

telephone saying, "Yes, Dad's been made Old Australian of the Year."

I'm going to speak to you today about the role of the Australian

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Administrative Appeals Tribunal in hearing appeals under the NDIS

scheme. I don't have any slides. I'm going to speak to you the way

Demosthenes did 2,500 years ago. You may want a pen and paper ready

when I give you the names of the decisions, so you can look them up.

You are all very familiar with the National Disability Insurance Scheme, so

I don't need to go into it in any detail.

I want to acknowledge my colleague from the tribunal, senior member Jill

Toohey, who is head of the NDIS division, because she has helped me put

together much of this material.

My concern this afternoon is with the third level of support in the NDIS,

namely, individual plans under which funding for reasonable and

necessary supports is provided to persons with disabilities who qualify to

be participants in the scheme. That's what I want to talk about because

essentially the government gave the Australian Administrative Appeals

Tribunal power to hear appeals from the National Disability Insurance

Agency on matters concerning that third level: who could participate in the

scheme and what would be the levels of support.

What is the Administrative Appeals Tribunal, or the AAT? Well, the

Administrative Appeals Tribunal Act was passed in 1975, in the dying days

of the Whitlam Government, and it commenced operation on 1 July 1976.

It is the major federal administrative tribunal and it hears appeals of

decisions made under 400 federal statutes.

Most of its work is in the area of social security benefits, of child support, of

workers' compensation under federal law. It also hears cases involving

immigration and citizenship, it hears cases in relation to various corporate

offences, it hears taxation matters, it has a veterans division, hearing

veterans matters, it hears freedom of information and countless other

things. On 1 July 2013 it was given power to hear appeals under the

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National Disability Insurance Scheme Act or what I'll call the NDIS Act

2013.

Where do its members come from? Well, there is a president, and he is

Duncan, a former federal politician and a judge of the Federal Court,

Duncan Kerr is our president. We have a series of vice-presidents, we

have senior members, we have ordinary members, and we go down to me,

ordinary part-time members. As of 1 July last year there were 89 of us

around Australia in the states and the territories.

Although we have different ranks of members, we have the same powers

to hear matters, and one member is as good as another. All members are

appointed to the general division, so I'm appointed to the general division,

but we have members appointed to the aviation division -- I forgot about

the aircraft licensing. There is a taxation division; no one in their right mind

would put me in charge of tax appeals. There is a veterans division and

various other divisions, and the NDIS division, headed by Jill Toohey, a

senior member.

To assist that division, four of us were appointed as part-time members in

August 2013 because of our links with disability. I think I'm the only one of

the four who is a person with disability, but my colleagues have all worked

in the disability area.

There was great disappointment amongst disability groups that a special

tribunal was not set up; something akin to the Social Security Appeals

Tribunal. The idea was that this tribunal, the AAT, would be too legalistic,

it would be full of lawyers, it wouldn't be a good look for persons with

disabilities.

I think, in hindsight, not because I'm a member of the tribunal, but I think

we persons with disabilities are better off under this fully resourced tribunal

than under a smaller tribunal which it would necessarily have been.

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What are the powers of members? Well, I am required to hear matters

without form or technicality and make the best or preferable decision.

I must adopt procedures in as informal manner as possible and I am not

bound by the rules of evidence, although if there are any lawyers here, the

rules of evidence are a good guide.

The tribunal was very concerned as to how it would adapt having a

disabilities jurisdiction. First of all, we have very ageing premises and they

had to be made accessible, even for people like me they had to be made

accessible. We wanted to think how we were going to make sure that

persons with disabilities, who are often poor people, synonymous with

poverty, we thought they might not have legal representation. That has

turned out to be wrong, they now do.

How would we adjust? How would we operate? We didn't want to sideline

we persons with disabilities into a special category that was limited.

So on 1 July 2013 our president put up a practice direction. If you want to

read it and the fact sheets, go on to our website, www.aat.gov.au,

Administrative Appeals Tribunal, and you can see our practice direction.

What happened? We appointed a special support person for any person

who lodges an appeal under the NDIS Act. Within six weeks there will be

a case conference and, at the end of the conference, the applicant, the

person with disabilities, will be given a plan in writing of what matters were

agreed to at the NDIA and what were not, and the next steps will be

conciliation and then, only if the person with disabilities wants it to go to a

decision will it go to a hearing.

The hearing is to be as untechnical as possible. I never make people

stand up. I only use the oath when I think it is useful. Sometimes I just

say, "Just tell me the story."

We try to give oral decisions as beneficially as we can.

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I gave the very first decision under the NDIS jurisdiction and read it out in

Braille, which I thought was an interesting thing for the tribunal to do, it was

the first time they had a Braille decision. Of course, we give decisions in

writing.

Most of our decisions have been put in writing, simply because we are

dealing what a new act. I don't know how many of you have read the NDIS

Act, but I don't know how to explain this, because I'm not very good at

vision. Have you ever seen an architectural plan of a house or a building

and then you look and you see that they haven't quite been able to erect it

the way it is glossily put? That's a bit like the NDIS Act. It's full of ringing

phrases. Section 3 has about 11 objects, all of the ones you would think

of, about giving we people with disabilities rights, and they are all very

important, and I think there are 17 principles, and we have to utilise those

objects and principles when interpreting any of the statutes. So that is

really quite complex.

The statute is untested, a lot of its provisions are new. We are concerned

also that my sisters and brothers with disabilities, sometimes there are

family members and other members, particularly for my sisters and

brothers with cognitive disabilities, and sometimes family members have

differing views on what is the best interests of the person, and we at the

tribunal have to sit and try and mediate all of this.

I am going to leave some time for questions, but let me look at legal aid.

The Gillard Government was concerned, and I think rightly concerned, that

persons with disabilities -- I have to read this -- a unique feature of the

NDIS is that all persons seeking review by the tribunal are entitled to

assistance under the national disability advocacy program administered by

the Department of Social Services, or DSS.

The external merits review support comprehends the following matters:

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funding has been provided in each trial site to an agency to engage

support persons who assist applicants at all stages of the process of

advocacy. The legal services component provides funding to legal aid

agencies under arrangements with the agency in each state and territory.

Funding is capped at $6,720 plus $2,000 for reports.

So, unlike other areas of federal justice, where legal aid is difficult to get,

you can get legal aid not only before the tribunal but also if you go up on

judicial review.

One matter has gone up on judicial review -- I'll come to it -- it is a decision

I decided with Justice Toohey, where it is being argued we committed

errors of law, and if the Federal Court says we did then we did and the

matter will be remitted back to someone else, most likely.

I don't think anyone should have all power, and the courts are there to

safeguard everybody's rights, and we can all make mistakes or, rather,

have different views from Federal Court judges. So that will be interesting

to see what happens.

If you want to look at this, if you go to the Department of Social Services,

you will see on their website details of the advocacy program and also the

legal aid available to we persons with disabilities.

One of the big surprises to us is we have had very few applications. We

recognise there are the trial sites and that they are being ramped up.

I think that the NDIA's appeal processes have worked very hard to try and

satisfy everybody and only perhaps the most difficult cases have come

through to us. As of the beginning of February -- I'm sorry, I haven't

checked the last couple of weeks -- only 26 matters, 26 applicants, applied

to the tribunal. Of these, 21 were settled, either at the case conference or

conciliation. Some of those settlements are confidential and I'm not aware

of them.

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Only five matters have gone to hearing. One was procedural, it was about

what sort of decisions can the AAT review, and I'll talk about that later.

Only four have related to substance matters.

Some of the questions that have arisen include how to assess value for

money when considering the cost of support against potential benefits for

an individual's quality of life; what weight should be given to the opinions of

independent experts against the experience of families and therapists

involved with an individual; and the tension between the need to ensure

the financial sustainability of the NDIS generally and the needs of

individuals.

The first case is the one I decided with Justice Toohey. I will simply tell

you what was said, and we will wait for the Federal Court to tell me that I'm

wrong, and you can go and read it. It is Mulligan v National Disability

Insurance Agency, the very first case. You can find it on the website of the

Administrative Appeals Tribunal or in Austlii, it is 2014 AAT A373.

The tribunal had to decide whether Mr Mulligan met the disability

requirements in the act. He suffered from a number of conditions,

including a heart condition, which limited his ability to walk and meant that

he could not mow his lawn. The only assistance he sought from the NDIS

was someone to help him mow his lawn each month.

The first question the tribunal had to consider was the meaning of

"disability" in section 24(1) of the act. The question arose because

"disability" appears to be used with slightly different meanings in different

parts of the act. It was also not clear what it would mean to say that

Mr Mulligan was "likely to require support under the NDIS for his lifetime".

The tribunal offered some tentative views but decided it was not necessary

finally to decide those questions because Mr Mulligan did not have the

"substantially reduced functional capacity" in at least one of the areas set

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out in section 24(1)(c), with all the little Roman numerals, because each of

the disability requirements in section 24(1) must be met. Mr Mulligan's

application failed.

We will see what the Federal Court says, probably next week. Oh, well.

The next case is Young v NDIA, again on the website, or if you know the

Austlii website, www.austlii.edu.au, and look for the AAT. This one is

2014 AAT A401.

Mr Young had emphysema and relied on portable oxygen. He also relied

on insulin for his type 1 diabetes. There was no dispute that he met the

disability requirements in the act and he was receiving some funding

support.

The tribunal had to decide whether a portable oxygen concentrator and an

insulin pump, which Mr Young preferred to injecting himself with insulin,

were reasonable and necessary supports. It had to consider the meaning

of "clinical treatments" in the act and whether the concentrator and pump

were "most appropriately funded or provided through the NDIS". The

tribunal held that they were most appropriately funded through the general

health system and therefore his appeal failed.

The next case is TKCW. It is a child. All the ones with children we don't

release names. It is TKCW v NDIA 2014 AAT A501. The applicant was a

child with autism. There was no dispute that he met the early intervention

requirements in the act and he was receiving a range of supports under

the NDIS.

The tribunal had to decide whether funding for a form of music therapy and

funding for a carer to stay with his twin brother while TKCW attended

speech therapy with his mother were reasonable and necessary supports.

So there are two things: one is the music therapy; and, two, do we also

provide a carer so that his mum can take him to the music therapy while

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someone looks after his twin brother?

The application turned on whether the particular form of music therapy was

or would likely be "effective and beneficial" for TKCW, having regard to the

current good practice.

The tribunal heard evidence from a speech therapist who had experience

with children with autism and from a person who said there was a lack --

we heard from that person and then from an academic who said there was

a lack of reliable research into the benefits of music therapy.

The tribunal -- I didn't decide this one -- was not satisfied on the

information it had that the therapy met the requirement in the act. It also

decided that funding for a carer for TKCW's brother was not "reasonable

and necessary support", taking into account "what it is reasonable to

expect families, carers, informal networks and the community to provide".

It affirmed the decision under review.

In December, we handed down the last of the nonprocedural decisions.

We published the reasons in writing, although the oral decision had been

delivered earlier. It is ZNDV v NDIA, 2014 AAT A1921.

The applicant child, who had Asperger's syndrome, was a participant in the

NDIS and was receiving a number of funding supports. At issue was

whether occupational therapy equipment to be used in his home was a

reasonable and necessary support.

The tribunal heard evidence about the sensory motor interventions for

children with autism from the child's treating occupational therapist and

from an independent expert. It was not satisfied that the proposed support

met the "value for money" criterion in section 34(1)(c) of the act.

I should point out here, if you read the full decision, when the child went

and visited the therapist, the equipment was in the therapist's rooms, and

the question was: should the scheme support him to have an extra set or a

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set of this motor equipment at his own home? The cost was of some

significance.

The final decision I would like to talk to you about is Burston v NDIS, 2014

AAT A456. It really concerns our powers under section 104 and related

provisions of the act as to what decisions we can make. In other words,

we can't make every decision under the act, it is only certain matters that

are appealable to us, and they are matters that persons with disabilities

need to check with their relevant assisting agency or support person, who

is going to be able to tell them whether they can appeal before us, and

also the NDIA should know whether they can appeal to us.

What have we learned in the tribunal? First, we have learned the act is

very difficult to interpret because no one fact situation is the same.

Particularly, the cases we have dealt with relating to small children pull at

all our heart strings. We would like to give every small child every

possibility. But we are bound by the law, bound by sustainability and

bound by value for money.

My colleagues on the tribunal tell me they have had an education in

learning about we persons with disabilities and some of them have been

humbled by the experience. On balance, I think it's better that we persons

with disabilities are dealt with by a mainstream tribunal, where they may go

and seek redress from the courts if we have got it wrong and where they

have funding so to do, because, just as I am in favour of inclusive

education, on balance I'm in favour of inclusive tribunals that we persons

with disabilities work as much as we can in the mainstream.

I'm happy to answer questions.

I hope that's given you some understanding of the work that we do and

I hope that I will learn and continue to learn from the disability community

and my sisters and brothers with disabilities as we go along in the

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proceeding years. Thank you very much.

APPLAUSE.

Richard Fay: Professor, Richard Fay from Queensland Lutheran Care.

Thank you for the presentation, it was very insightful.

One of the observations I think maybe we could glean from you is the

knowledge vacuum between the acute and primary sectors and the

disability sector. Especially coming from Queensland, where we have had

a census done on primary healthcare knowledge around the NDIS, which

shows that a lot of primary health practitioners and allied health

practitioners have very little knowledge around the NDIS and its

implications for how they are going to interact with those groups, and

certainly that Young v NDIA highlighted the issue of "necessary and

reasonable", which may be a medical issue rather than a disability issue.

I wonder if you have any commentary on how you see that interaction

between those two groups going forward?

Ron McCallum: That is a good question. I think the interaction is at a low

level and needs to be greater.

Coming from my perspective as an ageing lawyer, the NDIS Act and its

rules -- and I haven't gone into its whole series of rules which spawned the

legislation and then its guidelines -- are very difficult to get on top of.

There is good information on the NDIS website, but you have to go to it

and you have to be interested in it and you have to have some

understanding of the disability.

I think we need more community education. I think we have been so

concerned about rolling it out and getting everything right that we haven't

looked at primary healthcare.

In the case involving the oxygen creator with the insulin pump, the tribunal

took the view these were matters which the primary health system should

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be able to take care of, either through the public system or if the person

had private health insurance. So there is a fine balancing act.

I agree with you, I think we need more out and about by the NDIA. I think

the NDIA has been feeling its way. It has been very concerned that it

stays within budget, and remarkably it has, and I think the fact that only

four decisions have come to us in the last year and a half shows that it

seems to be satisfying its client base.

Perhaps I should say something briefly. What actually happens at a

hearing? Well, I get the associate to go in and make sure that the person

with disabilities is fine, is okay, that they have a support person or a

lawyer, that the government lawyer is there. If it involves children, then

there can be no one else, it is private; if not, we are a public tribunal.

I go in, I say, "Hello, I'm Ron McCallum," and "Let's talk about what is the

issue in this matter." I get them both to talk, the person with disabilities

and their representative and the lawyer for the NDIA, and then we have the

evidence.

I have never bothered to take an oath in a disability case, I much prefer

that they tell me their story. Sometimes we have had medical evidence

and, after it's over we will go away -- we usually try to have two people

hear each one, so we can think about it, and then come back and give oral

decisions, and then, if the parties want it, we give them in writing.

We also don't identify people. We don't identify the children, as you can

see, they are given letters as names, TKW, whatever. We are very

concerned, because our decisions are on the web, we don't put in birth

dates of people, even when they are adults, because we are very

concerned about identity theft.

So they are about as informal as I can make them. I've never tried to play

lawyer with it. I ask them, you know, "I'm disabled too. Tell me your story.

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Let me listen. What's the problem?"

Suzanne Colbert: Any other questions? Okay.

Ron McCallum: Thank you very much.

APPLAUSE

Suzanne Colbert: Thank you very much, Prof McCallum.

I can feel we are all getting a little tired.

What we need is to get our brains re-actioned and lift our energy for the

next very interesting panel discussion, which is about integrating mental

health into disability reform.

I would like to invite David Meldrum and Adrian Munro to come to the

stage.

David Meldrum is the executive director Mental Illness Fellowship of

Australia, a federation of longstanding member organisations delivering

specialist services for individuals and families. MIFA members now

operate out of nearly 100 locations in all states and territories.

David has worked in a variety of executive positions across much of the

human services sector, both in government, NGOs and as a private

consultant.

As well as his MIFA role, David is past president of the Mental Illness

Fellowship of South Australia.

After more than 25 years working in and around the mental health sector,

David believes the overall situation shows more promise now than at any

time since the Richmond report of the late 1980s. Isn't that fantastic to

hear.

Recovery-focused NGOs, with whole of family approach and strongly peer

influenced in all aspects of their work, are here to stay, and he finds it

exciting to be part of that action, which I'm sure we are looking forward to

hearing about that.

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Adrian Munro is executive director of operations of the Richmond

Fellowship of WA. Adrian initially completed a physiotherapy degree and

worked as a physiotherapist in a number of settings, including hospitals,

private practice and community. He is currently completing a Masters of

Health Service Admin at Curtin University, and previously worked as a

regional manager of Anglicare in Queensland.

Adrian is driven by a strong sense of social justice and has a real passion

for managing services that make a genuine difference in the lives of the

most marginalised in our community.

RFWA is a leader in the mental health sector in WA and is always looking

for ways to be innovative in services. Adrian also has a strong

commitment to including the voices of consumers and family members in

all aspects of health services.

There will be a short few words by each of our panelists and then a few

key questions to open up some discussion.

Can I pass to David first.

David Meldrum: I was told short, five or seven minutes, is that about right?

Suzanne Colbert: Yes.

David Meldrum: I want to take a few steps backwards about the NDIS

before I get to specific questions about how it is operating.

I'm talking in the field of mental health, I'm talking about the disabilities that

are associated with mental illness. I don't know to what extent these

comments relate at all to other areas of disabilities. I want to put that right

up front. Although I have worked a little bit in the disability sector, I would

regard myself as very underinformed.

This morning, I heard a number of comments made. Susan Ryan said the

NDIS will only be good enough if it covers all people, it must cover all

people with a disability. She then went on to say it was reform on a scale

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that had not been seen in decades.

The Minister said, "Welcome to the new world of the NDIS." Stephanie

Gunn said, "At full scheme everybody will be in the NDIS." The Minister

said, going back to the Minister for a moment, that previously under block

funding clients were invisible, that offerings were very flexible and

essentially you had to take what you could get.

I just want to say that every one of those statements is completely wrong --

completely wrong. It is really important for us to try and get our balance

and not be overwhelmed by the complexities of the NDIS.

The world is going on with or without the NDIS and it is an important

component but it is not everything. I want to talk particularly about why it's

not everything in relation to mental illness.

In any given year, about 4 million Australians identify as having had a

mental health problem. About half of them seek professional help.

Two million people seek professional health. It filters down to, you get to

the point where who seeks extended help from both the public and private

systems, and our knowledge is very patchy, but it is somewhere between

400,000 and 600,000 every year seek extended help, more than a few

visits, more than a few contacts. You get right down to the level of who is

in the caseloads of public systems and you are down to 250,000 to

300,000 people.

The NDIS at full scheme is designed to cater for 57,000 people with severe

and persistent mental illness and complex problems, involving a number of

areas of psychosocial disability; 57,000 people out of those several

hundred thousand.

The rest of the world will continue. If our project is offering the right help to

people whose quality of life is being damaged by their mental illness and

the associated effects of that, then that project is a lot bigger than the

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NDIS ever intends to be.

If you look at the Productivity Commission's schemata of who is in and who

is out with mental illness, most of the people with severe mental illness are

out. It is a small narrow spectrum of severe and persistent mental illness.

Again, I don't know how this plays with intellectual disability or with brain

injury, but in the mental illness area it is severe and persistent with

complex problems and extensive psychosocial disability.

So when you talk about the whole world, when you look now and there is

between 1,000 and 1,500 people on a package, if the world is mental

illness, then that is about -- what is it? -- Tuvalu? What's the smallest

country in the world? It's a very tiny bit of that world at the moment. At full

scheme, at 57,000 people, it might be, in the mental health range of

services, it might be Germany, it might even by trying to be China, but it

will not be the whole world. The majority of services will still be well

outside the NDIS, both clinical and community support and disability

support.

The next thing I want to go to from those quotes is the Minister saying in

the days of block funding the client has been invisible. It's difficult -- it's

really difficult as you get older not to be a grumpy old bugger, and it

normally does no good whatsoever. But I find it offensive to hear my

career of 25, nearly 30, years in mental health described as making clients

invisible.

I was really pleased to hear Stephanie Gunn say this morning in Barwon

that her experience has been that she is finding the psychosocial support

sector has truly embraced principles of recovery. Well, the key principle of

recovery is that you get alongside people, find out what they want and help

them get it. It's the most client-centric model you could possibly think of.

Anybody who's had a look at the way current services work -- sure, I go

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around Australia a lot and I see a lot of programs, I must have seen

hundreds by now, and there are a few that are from the dark ages, or more

likely from the 1970s and '80s, very few. Most have moved on.

Those images that people have of basket weaving and occupational

therapy centres based in psychiatric hospitals are 30 years out of date. It

has all changed a lot. To hear the situation described that this new model,

which I think is actually right for the people with most severe and persistent

and ongoing disability, being described as a new moral high ground to

which we should all be aspiring, I simply don't agree with.

I don't think we need to be embarrassed about that, and it's not being

combative. The reason the model is right for these 57,000 people and

we've got it wrong up to now for them, we simply have not responded

enough to people with long-term severe ongoing disabilities, is that when

you're signing on for the long term, (a) you are involving potentially millions

of dollars, it is not a lighthearted decision to sign on, as it were, to a gold

card to the level of disability support that you need for the rest of your life;

and, secondly, the issues about choice and control become incredibly

important when you are making such long-term decisions.

The model of the insurance model, a cost effective model with lots of

choice and control and safeguards and checks and balances is the right

one, but it's not morally superior, it just happens to be technically the right

program.

It didn't invent the idea of the client being at the centre of the thing and

having choice and control. It did not invent that. I was about to say we

invented it 30 years ago. But no, that's not true. It has been evolving over

a long period of time, and imperfectly, and the NDIS will be imperfect.

It was really interesting to hear they are already finding themselves in

court. There will be bureaucratic stuff-ups, there will be very unhappy

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clients, there will be abuse, there will be inefficiencies, there will be waiting

lists. Welcome to the real world of human services provision. That is

where the NDIA will be in a few years' time.

It is really important that they, along with us, all accept that all of time we

are part of the problem and part of the solution at the same time.

So I don't cede the moral high ground.

The particular question we are asked to talk about, which I'll get to a little

bit later, is: has this new scenario created gaps where there weren't gaps

before? I won't talk about this for long, because I've already outstayed my

welcome, I can see that.

What I wanted to quickly say about that is: no intended gaps. The whole

idea was to fill a major gap, to do a better job of providing ongoing

long-term unlimited support for people with severe and persistent

psychosocial disabilities. We haven't done it well at all. It was to fill that

gap.

But in the context of all these other services that need to continue, there

are some knock-on effects that are quite problematic. I can't talk them

about them at length here, but one is -- I can't put this any more bluntly

than this -- they took some of our money away; and the other is they have

stopped in many ways the health reform project.

In relation to mental illness over the last 15 years, heaps of things that

used to be said to be clinical; people used to have therapeutic morning

teas. Anything that could be defined as clinical remained in the clinical

system. That has changed dramatically and every year that goes past,

new services find their way over into community managed nonclinical

models that work better and are generally working more cost effectively.

That process has stopped dead in the last two years because health

systems have said, "We've got to hold on to what we've got so the NDIS

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doesn't get it." And they are very, very cheered by the fact that the

legislation protects them because they are clinical services and they will

never have to be called on to spend money.

So, one of the knock-on effects has not been to create a gap per se but to

stop a reform process that we really cared about. Thank you.

APPLAUSE

Suzanne Colbert: Thank you.

Adrian Munro: It's always a difficult act to follow David, but certainly great

honesty.

I've got a couple of things to go through, touching on the ground level of

what we are experiencing in WA. We are in the unique position of not only

adapting to reform in the disability sector, as a lot of us here are, but we

have the NDIA in one region and we also have the NDIA My Way, which is

the state government; the WA Government is doing a slightly different

version of NDIS.

As an organisation who works in both areas, it is really difficult because

there are some real significant differences in the way the two work and it is

two different portals and two sets of relationships. It is really difficult for

organisations and it is a really significant burden administratively and for

staff.

All of you, no doubt, you would know how much it is actually costing you to

adjust to NDIA, attend all these new things, new systems and processes,

and we've got that going on twice.

We are a medium sized organisation at Richmond Fellowship and if you

are a small organisation in WA, around $2 million or $3 million, gee, it

would be such a big burden to learn the two systems.

From a mental health perspective, there have been a lot of challenges to

put mental health in in the model we have looked at. Very often we feel it

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is a bit of an afterthought, and if you look at the way mental health was put

into NDIS, that is for good reason.

There is a lot of uncertainty with everyone working with NDIS. Things

I hear a lot is, "Look, that's a great question, we will take that on notice.

Let's park that for a moment. We will get to that, we will resolve that." But

we are actually here and now, we need answers to those things here and

now because we are looking after individuals who have packages.

Sharing what David said, global funding -- I will talk more about this

tomorrow -- is not always the big enemy that bureaucrats and the public

and health policy people make it out to be. In mental health there are

some really good practical benefits of global funding, or block funding as it

is often called, because it gives you the flexibility, you can be innovative

and adjust from day to day.

In mental health, the needs can change so significantly from one day to the

next and it gives us that flexibility.

There is very good research from around the world, in OECD nations, from

health economists and funding models, that if you look at insurance

models, activity based funding or fee for service, there are some real

limitations of applying that funding model to mental health.

There are other countries that have gone down that path and have gone

back to a combination of insurance schemes with block funding for mental

health.

I guess we are told that it is a trial and we are reviewing things and a

model will evolve at the end, so hopefully there is some flexibility in that.

In terms of on the ground, the things we have experienced, a lot of

individuals with mental illness are told, "Let's start from the point of what

would a good life look like for you and then let's develop a plan from there."

That has left a lot of individuals feeling very confused and misled.

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We have a program in WA called Independent Living Strategy, which the

Mental Health Commission of WA runs. Individuals on these packages

sometimes have $90,000 to $100,000 to spend and they are excellent

packages that look at every area of someone's life, and they start from the

point of what does a good life look like.

There are a lot of individuals with a mental illness who we work with, who

have this idea, "This is like ICLS," that the state government runs, and then

they come in to NDIS and they are actually told, "Hold on, let's look at what

is reasonable and necessary." The expectation that individuals have are

so wildly different to the plan that comes back. Then often it is service

providers who are working through that.

We know that there are a huge number of individuals in NDIS who apply,

who have a mental illness, who are not being found as eligible. They are

individuals on Partners in Recovery program and also on PHaMS, the

Personal Helpers and Mentor Scheme.

I guess what we were told beforehand -- I'm on the Partners in Recovery

national reference group and know the program very well, and if you look

on paper, if you are in PIR, you should be in NDIS, but that is not always

the experience that we are seeing.

With PHaMS, not everyone would necessarily be eligible, but you would

hope that many would be at a much lower level, but we are experiencing a

significant number of individuals on PHaMS who are eligible, who have

already been deemed not eligible for NDIS.

I guess the question has to be asked: if PHaMS and PIR are going to

move in to NDIS, and we told they are in scope by 70 to 100 per cent, what

will happen to those individuals and families?

One of the other difficulties we see is individuals with a mental illness are

so disempowered and disadvantaged and are so used to having very little

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rights and power and decision making, they are so non-inclined to be

proactive and initiate seeking services.

I guess, seeing Mary and her story with her son makes me realise -- this is

not always the case -- there are individuals living with a physical

impairment who have families who are so educated and articulate and

knowledgeable and are amazing advocates for their families, and wouldn't

be amazing and great if every single individual had that amazing blessing

in their family.

I know this would happen in disability, I'm not foolish enough to think

everyone has that amazing situation, but in mental health there are so

many dysfunctional families where there's been so much trauma and

conflict, there are so many individuals who don't have that strong support.

Fortunately, there is funding and Richmond Fellowship is being funded to

actively seek and inform individuals with a mental illness, but still the

uptake of individuals with a mental illness coming to the program is really

quite low.

I guess, in terms of from a practical level from service providers, as I said,

it is a huge administrative burden and cost adjusting to two systems. But

in the same line of thinking, we don't want to put all our eggs in one basket

because, realistically, neither of the two models are going to be taken lock,

stock and barrel, I don't think. We are adjusting enough to work with those

models, but realising that we still need to be flexible to whatever is going to

come down the track.

I guess there is also a real change for a lot of service providers, because

we now have to get our heads around marketing and promotion, which is

something we haven't been good at before, so that's quite a change.

I guess I also have some concerns around how it works in a rural and

remote area and also for the Aboriginal population. I am privileged to do a

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lot of work with Aboriginal elders and I don't see a lot of engagement with

Aboriginal elders, and the ones I speak to haven't had that opportunity and

been sought out to provide feedback.

I guess the last thing I will share before we go to questions is in mental

health we really look at recovery and what does recovery from mental

illness look like. We have a national framework for recovery oriented

practice that we always work by and when we work in a disability model

there can be conflict around permanent impairment. That's not a barrier.

I guess our overall approach at Richmond Fellowship and in WA across

the sector is that things aren't perfect but we need to work together to

resolve those things.

So, lots of work to do, lots of questions, but I guess we are at the table

trying to resolve them.

APPLAUSE

Suzanne Colbert: Well, we have heard a wide range of challenges and a

misalignment between expectations of who would have been considered

as traditionally part of the NDIS cohort and people experiencing significant

psychosocial disability.

I guess there is now an opportunity for questions about your experience

and what you can put forward. It would be great to hear any positive

stories about the way there has been an interface that has worked

successfully, but then also to be able to take away the key challenges and

how they can be worked through.

Question: Thank you both, it was very interesting and thought provoking.

I work with people with multiple sclerosis, also in Western Australia. We

are actually working with three models in MS because we have got the

NDIS, we have got the state government My Way and then we have got

the rest of the state, with the traditional government model, and they are all

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morphing daily, so it is quite challenging.

My question to you is: a lot of people that we support do not identify as

having a disability. They actually don't want to get involved with the

scheme, although we do know that it would have enormous benefits to

them, or they don't want to say that they are not going to recover. They

are hoping for a cure tomorrow, for the stem cells, for the resulting

exacerbation to go away, and they just don't want to admit that what they

have got is going to stay with them.

My other question is: we have had a number of people who have gone

through the system and have got plans and they don't have family support,

their support systems have all fallen away over the years, and the plans

are just sitting on the kitchen table, not being actioned.

Adrian Munro: Can I make one comment on the first part about not

identifying as having a disability, because for individuals who experience a

mental distress or live with a mental illness, they typically would not say,

"I have a disability."

One thing, when you look through the planning, when I look at it, I think it is

very functional impairment based, which I understand there is a real need

for that and, from my physiotherapy background, if I were working with an

individual with a physical impairment I would be well placed to assist them

beforehand in the planning, to think, "Well, these are the things you are not

able to do and these are the things you want to be able to do," and to be

able to write a plan. I'm sure there are lots of healthcare professionals who

are familiar with that model and can assist individuals in that planning.

In mental health, because we are based in a recovery model, especially in

community base, where we are not clinical and we deliberately try not to

be clinical, for our staff it is a very different idea of functional impairment

and overlapping that with mental health.

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Realistically, a lot of the individuals we work with will talk to us before their

meetings and try to understand; they see a lot of paperwork to get into the

program. So it is a very different model for individuals and for staff in the

mental health sector and I think that could be a barrier to individuals with a

mental illness getting the absolute best plan, and certainly the whole notion

of them identifying with having a disability is quite foreign to a lot of them.

David Meldrum: I think a lot of this is obvious, what you just said is

obvious. And I don't know to what extent it applies to people in other

disability groups. I would hope everybody is looking for the best possible

chance of recovery, and you wouldn't want to extinguish that.

Some of the horror stories you hear about some of the early attempts at

NDIA eligibility testing sound pretty bad. But it is starting to go quite well in

some places. I have heard some really good news stories out of the

Hunter, where the trial there works in very close collaboration between the

NGOs and the mental health services and the Path to Recovery program,

where nobody says, "What disabilities have you got?" They start with

questions, the way you did, "What does a good life look like? What are the

bits we should start working on?" The word "disability" does not come up

in the conversation.

So it is possible to get past these things. Everybody is looking for

something. Find out what it is and then talk that language.

I'm not sure I got the second part of your question very well about the

family having a plan and it is not being implemented.

Question: To help to implement plans, because very often it's not there.

It's all right if you are associated with a service provider, but if you are

isolated -- I'm just say we have a mismatch about implementing plans, that

some people don't have the assistance that they need and there is a real

pressure on planners to get a certain number of plans out, so they give

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one, get it on the table and go on to the next person. They just don't know

where to go next, and we don't even know they have got a plan.

David Meldrum: Right. I don't want to sound condescending, but the NDIA

is learning that there is a lot more coordination required than they thought,

and it is ongoing coordination of a very supportive type. If care

coordination managers don't exist by now, they will be there by another

name shortly, because in our space people need a lot of help

intermittently, and sometimes constantly, over a long period of time to

make a plan turn into reality.

Adrian Munro: I guess I've also spoken -- and this I'm sure is common,

you have heard here -- individuals have sat down -- and I've heard from

family members and individuals who said, "Look, I have got this plan and

that was my plan for the next year, and this was after one meeting, and

I didn't realise that that meeting was determining this whole plan." They

say, "Look, I turned up to this meeting and I didn't know anything, and then

I was trying to take in all this information, and then before I knew it I had

this plan." They say, "I didn't know that before."

All these things they weren't aware of, and I guess it's raised the issue of

preplanning, which I'm sure is common, but there needs to be a lot more

work.

I know, working in mental health, we would routinely take a number of

meetings with individuals and their families before developing any sort of

plan and we would try to give them as much information beforehand

around what to expect, the questions they can ask.

Because we need to remember that, especially in mental health, we are

working with individuals who may have been in hospitals for years and for

their whole life they have been used to, "I am the healthcare professional,

you just receive services, we know what's best for you, you don't know

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how to make decisions."

So it is such a paradigm shift for an individual to have choice and control.

For you and I, it may be commonplace, where we know what we want and

we know what is available to us, but we need to remember these

individuals who may have never made a choice about anything to do with

their healthcare all their life, for 20 years, and it is actually a life skill to

think about things and to make decisions and make the right choice, and

we need to assist and make all the provisions for individuals to do that.

Daniel Baddiley: Hello, it's Daniel Baddiley from Communify Queensland.

I am the team leader of the Personal Helpers and Mentors Program for

inner north Brisbane. Please excuse me if I get excited, this is the 5th

NDIS conference I've been to and this is the first time people have spoken

specifically about mental illness, so I find that very exciting, but at the

same time I guess it puts in perspective where mental illness lies in the

greater scope of the NDIS at the moment.

The first question I'd like to ask -- I have two, if that's okay; I'll try to keep

them succinct, although I'm not always known for that -- the first question is

around looking at eligibility for the tier 3, it seems there is a high

prevalence of people with a diagnosis of schizophrenia.

I don't know if I'm reading into this too much, but from my experience the

diagnosis of schizophrenia in itself can be quite debilitating for people, and

the fact that that is the diagnosis that is showing up is creating people

eligible for the tier 3 program, is there in that a reflection that possibly we

are seeing a reimposition of a medical model that focuses more on

diagnosis being put back on the mental health sector, which is largely now

focusing on psychosocial support?

The second question is: looking at the value for money focus of the NDIS

and considering programs like Partners in Recovery, where there is what's

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probably considered above average pay rates for many staff members as

we try to attract skilled workers into the sector, and also the PHaMS

program, and also the risk of casualisation of the workforce, do you see a

potential loss of skilled staff from the sector?

David Meldrum: Can I go to the first one?

Adrian Munro: Go for it.

David Meldrum: I mean, it's not intentional that there be a drive to a more

diagnostically based approach, but it's interesting, today I heard a couple

of times, I think from the minister and from one of the speakers -- it might

have been Stephanie -- saying it is not an entitlement scheme. But it is

starting to sound like that.

When you listen to the things that are working their way into court cases,

what it's progressively starting to do is to define more and more tightly who

gets over this hurdle into tier 3.

I fear that we're going to have to get more and more focused on several

boxes you've got to tick, including the very severe mental illness that

everybody agrees is a very severe mental illness. You know, even Mark

Latham agrees it's a severe mental illness, not a lifestyle choice. So I can

see us pushing more towards that.

It is ironic that the NDIS, which is in the social services sector, is

progressing towards an insistence that the very first test be diagnosis,

whereas in Partners in Recovery, which is funded by the Department of

Health, which we all used to bag as being clinically obsessed, they say,

you take people in whether or not they have got a current diagnosis, where

they appear to have a mental illness, and you get around to the business

of confirming the diagnosis later, when the person is ready to go through

that process.

Daniel Baddiley: Or PHaMS, where a diagnosis is completely

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unnecessary, as long as there is evidence of mental illness, and diagnosis

is not required at any point in the program.

David Meldrum: Now, I do understand that when you design a scheme

which is offering potentially millions of dollars over 30 years, that certain

pressures start to emerge, and how to handle them most effectively

without starting to focus too much and rely too much on diagnostic labels,

I'm not sure I have all the answers, but it is one of the consequences we've

got to think our way through, in having something that guarantees you a

gold card for life.

Adrian Munro: In terms of schizophrenia, I'm not going to get into a long

debate, but there are countries in the world who no longer use the term.

The whole term is completely flawed.

If you go out to the public and say, "What are the first five words that come

to your mind when you hear the word 'schizophrenia'?", you think, "Loony",

"Loopy", "Crazy", "Putting them in an asylum," "They are a risk, they are a

danger to my safety," all these stigmatised terms that come up.

I completely agree, if it's about meeting unmet need in impairment, why

does it matter if someone is formally diagnosed with schizophrenia or not?

If you have needs and if you need assistance to live independently in the

community, why aren't we just addressing those needs?

One real barrier in WA, in the WA-specific NDIS, is that you need a formal

diagnosis of mental illness that is at least five years old, and that's

prohibitive for a lot of people.

In terms of value for money, Australia as a whole in the healthcare

services is not very good at determining value for money. There are a lot

of countries in the world who far outperform us in research and evaluation

and health economics of the value for money we get. Often the sectors

would say, "Look, we know we do good work just because we do," but

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there needs to be a lot more investment from actually getting true

outcomes with value for money.

David Meldrum: Your second question was about workforce. It's a

learning process and I think the NDIA people who are working in this area

are learning.

When they started out they had a sort of bimodal view of the workforce,

which is much like the way aged care has developed, that is, there were

large numbers of people who earn $20 an hour and a small number of

super-expert people who earn $100 an hour. Well, the mental health

sector of the last decade has not looked anything like that. It's got stacks

of people in the middle, with a bit of a mixture of the skill sets and some

new skill sets that didn't exist before or weren't recognised before, and I

think we are slowly learning to understand each other.

Question: Hi, my name is Yalina(?), I'm from Corrections Victoria, the

Department of Justice, so that interface has been a special interest area in

my work.

For cognitive impairment but also especially mental illness as a disability,

some of the issues we have identified in the corrections system, we have

two prisons in the trial site in Barwon and some of the issues we are

finding is creating gaps, for example, the onus being on the individual to

demonstrate their disability, which might be difficult for someone who has

not experienced an intervention or had anybody address their needs,

sometimes being why they have come into contact with the criminal justice

system; also being ineligible for the NDIS because their mental illness is

seen as episodic, not permanent and ongoing as a disability.

Also, issues where choice and control may not be a privilege for some

people who are bound by conditions on an order imposed by a court due to

any particular offending behaviour. So that has been quite problematic for

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us in trying to advocate for people in the system and support their

transition planning and other needs for a better life in the community and to

protect the community as well.

I am curious, in the mental health space, what do you think is the best way

to address those issues? Is it to continue working in the NDIS direction or

do you think we need to concentrate our efforts into the other systems or

mainstream system?

David Meldrum: If I can quickly comment, as I said, from my view of the

world, the majority of those people would not be in the NDIS, that's the first

thing, so you need to start with a broader view than that.

I will go to an example. There are a number of Partners in Recovery

programs in Australia which have themselves landed in areas where there

are gaols and several of them have formed amazing relationships with the

prison services, the psychology services, the probation services, where

they are identifying people who fit the Partners in Recovery criteria and

work with them for a month or two before their release, because

engagement takes a long time. There are all sorts of language issues and

other issues to get your way through, and lobbying, as the current model,

which is to say, "Here is an appointment to see a psychologist or

psychiatrist the week after you get released" is not a highly effective

strategy.

This strategy of working together over a period of time is really working

well. Dubbo Gaol is a very good example where it has been quite

spectacular in its impact.

I guess it goes to the wider topic, for me, of how painstaking and exciting

the business of engagement with people with more severe mental illness

can be. It takes a long time and it takes a lot of expertise and a lot of

patience. If a person is in gaol and you want them, by the time they leave

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gaol, to be at a point where they are ready to accept help, you've got to

start very early.

Adrian Munro: I guess what it highlights also is there's a really strong need

to have partnerships across sectors and it is very easy, I guess, for lots of

sectors to work in isolation, but Partners in Recovery is a program that has

shown the importance of working with housing, justice, primary healthcare,

lots of things, and seeing some good results across Australia.

I guess, in terms of proving that you are in, it gets to the heart of an

insurance model, which is designed to set a cap on the costs and to keep

people out. Global funding and other forms of funding are designed to get

people in and meet need.

The same as when you have car insurance, the onus is on you to prove

that you've got a broken window. Insurance companies always try to keep

people out. That's what insurance schemes do. It's a very narrow way to

get in, and that's one of the challenges we see with individuals with a

mental illness, the gate to get in can be quite narrow. To be honest, if a

family member of mine who had a mental illness was trying to get into

NDIS, the easiest way is if you said you had another physical impairment

or ABI. We are seeing a lot of individuals with a dual diagnosis moving

into NDIS; and great, all needs need to be met, but it is a very narrow gate

to get in if you solely have a mental illness.

Suzanne Colbert: We have one more question.

Question: I have a comment more than a question.

Thanks so much, you two, because we have mental illness or mental

problems in our family, over the years and generations, and you have

given me great insight today. So thank you very much.

Suzanne Colbert: Could you join with me to thank David and Adrian for

their thought provoking session.

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APPLAUSE

It has come to that time of the day to do a little Cook's tour recap of where

we have been today. It seems like we have travelled a very big distance

from opening with Susan Ryan, who reminded us, and I think rightfully so,

that people with disability are very prominent in Australia's discourse

currently. That has certainly been really noticeable to me, having worked

in the sector for 25 years or so, there has never been a time when there

has been so much discussion.

She reminded us that the Disability Discrimination Act complaints are the

highest number in the Australian Human Rights Commission and the

approach Susan will be taking in her tenure as commissioner will be about

consultation. She also announced the national inquiry into employment

and people with disability as well as older Australians.

I know that recently, at the COAG meeting, it was agreed with Senator

Fifield and all of the state ministers that employment be the focus area of

their attention.

Senator Fifield talked about the National Disability Strategy. We

sometimes forget the National Disability Insurance Scheme is part of the

National Disability Strategy, which is our roadmap to the future; and

controversially said that the money will follow the need and the money will

follow choice, and talked about the National Disability Insurance Scheme

as driving both innovation and consultation and collaboration. So I think

that will be very much a two-way process, not one-way.

Steph and Sue, from the agency, shared with us the richness of data

collected which can really inform current and future service development

and delivery, and talked about their key learnings to date, with a focus on

the real theme of today, which has been collaboration and partnerships.

They talked about their challenges and made their commitment to continue

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listening and learning and to find those boundaries between NDIS funded

services and mainstream services. I think we heard that theme come up,

hearing Ron's complaints that he has been fielding.

They also talked about the unique challenges of rural and remote

opportunities and how they continue to present unique challenges,

particularly when mixed with the complexity of Aboriginal communities,

where technology is not the answer for consultation and collaboration.

I think most of us probably felt almost distressed to hear about the First

Peoples Disability Network and the level of complexity of support that is

required. Damian pointed out that Aboriginal people with disability are

most likely to be the most disadvantaged of all Australians.

He did encourage us, and I encourage you, to have a look at First Peoples

Disability Network's 10-point plan.

He shared with us some insights about things that we need to do to work

with those communities, such as to take time to become culturally aware,

allow time for more than one visit, and the need to assist Aboriginal people

to understand their rights and entitlements; that they don't necessarily have

a good understanding of those rights and entitlements, and we can be

helpful.

Mary Nolan synthesising the medical and social model and bringing

together health and disability was a very interesting and truly enlightening

presentation, and the journey as a parent to navigate complex systems to

develop a new model of care has really pioneered pathways for others,

and I'm sure everyone in this room gives our heartfelt appreciation to Mary

for the journey she has been on.

She gave a powerful example of really watching, interpreting and

responding to people with complex and significant health and disability

needs.

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Dr John Chesterman talked about the significant number of people in NDIS

that require decision-making supports. People with disabilities should be

supported to make their own decisions rather than using substitute

decision-making, which can, in a way, seem intuitively almost

administratively more convenient, but it does actually work in conflict to the

rights of the UN convention, it goes against those rights.

He talked about the complexity of getting a national framework for

safeguards and trying to ensure that vulnerable people also have some

sense of authorisation about who can work with people and the need for

clarity from the NDIS on decision-making.

Prof McCallum helped us understand about the 26 applications. In over

13,000 people that have been seen, I think 26 applications is a very low

number.

Then David reminded us that lots of the statements made this morning

were probably too broad, too general and not entirely factually correct, and

talked about the principles in recovery and about being realistic about in

the full scheme of NDIS there will be about 57,000 people with

psychosocial disabilities, and that doesn't truly reflect the number of

Australians who experience long-term poor mental health and

psychosocial disabilities.

We were pointed by Adrian to the difficulty in WA of working with two

systems, and that indeed international research has given some credence

to block funding.

The challenges, I think, are certainly about ensuring that those key

questions, regardless of diagnosis, regardless of what that medical

approach says, the key question is about what would life look like for an

individual? I think the answers to that are as diverse as the more than

13,000 people who are currently using the scheme.

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I hope that today has stimulated both answers as well as questions.

I want to just close, because I think Mary's presentation in particular

prompted me and reminded me of what started the Australian Network on

Disability, my own organisation, which was started by a little engineering

company that employed 20 people in total, of which five of those people

had significant disabilities.

So, from that small group, that one employer who employed 20 people, our

organisation now, amongst the combined members, employs more than

10 per cent of the entire Australian workforce.

If I can use a quote from Margaret Mead: "Never underestimate the power

of a small group of committed people to change the world. In fact, it's the

only thing that ever has."

Thank you.

APPLAUSE.

Tina Karas: Just finally, before everyone leaves the room, can you join me

in thanking Suzanne for her great efforts in chairing today, and also in

thanking Helen Case, who has been providing the live captioning

throughout the day.

There are networking drinks in the foyer, and we will see you all again

tomorrow morning at 9 o'clock.

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