Strengthening Disability Advocacy Conference 2017
Getting into gear for the NDIS journey

Friday 15 September @ NAB The Hall

Motor’s running and we’re ready to roll


Friday 15th September, 2017: 11:00am - 12:00pm


The Hall


Facilitated by:

Llewellyn Reynders, Policy Manager, VCOSS

Llewellyn was called in at the last minute to facilitate this panel in place of Leah van Poppel who succumbed to the dreaded flu. Photo of Llewellyn Reynders, Policy Manager, VCOSS

Panelists include:

Kirsten Deane, Executive Director, National Disability and Carer Alliance.

Until recently, Kirsten was the National Manager of Communications and Engagement at the Australian Federation of Disability Organisations and was a Director in the Information Linkages and Capacity Building (ILC) team at the National Disability Insurance Agency. Before joining the NDIA, she served as the inaugural Executive Director of the National Disability and Carer Alliance and the Deputy Campaign Director of the Every Australian Counts campaign for the National Disability Insurance Scheme.

Photo of Kirsten Deane, Executive Director, National Disability and Carer Alliance.

Dean Barton-Smith, AM

Dean Barton-Smith AM, has accumulated more than 30 years experience in the field of marketing and public affairs,  strategic / corporate planning and advocacy within the telecommunication, sport, government (both state and federal), retail, health care, mental health, professional association, emergency management, transport, community and disability sectors.

Photo of Dean Barton-Smith, AM

Les Cope, President of Ability Dignity Access Management (ADAM inc.), Administrator at NDIS Grassroots Facebook Group

Prior to his involvement withAbility Dignity Access Management (ADAM inc.), a Victorian non-profit organisation whose main focus is empowering and supporting people with disabilities, Les was a founding member and Chairman of ‘Chandler Co-operative’, one of 13 disability groups forming the Victorian Parent Advocacy Collective (VPAC). Les continues to share Information and empower others towards self-advocacy in his current role as an administrator with the ‘NDIS Grassroots Discussion Facebook Group.

Photo of Les Cope, President of Ability Dignity Access Management (ADAM inc.), Administrator at NDIS Grassroots Facebook Group

Session Summary

The strength of personal stories and grassroots campaigning on the rights of people with disability touched the general public and politicians alike.  This panel reflected on how highlighting the disparity of people with disability in living an ‘ordinary life’ shamed a nation and brought  the NDIS into being. We turned the narrow dusty road into a super highway- but are we there yet?




Welcome back, everyone.  I hope you enjoyed the break.  So on our NDIS journey, the motor is running and we are certainly ready to roll.  This session looks at the campaign of the NDIS and where we are now.  The strength of personal stories and grassroots campaigning on the rights of people with disability touched the general public and politicians alike.  This panel will reflect on how highlighting the disparity of people with disability in living an “ordinary life” shamed the nation and brought the NDIS into being.  We turned the narrow dusty road into a super highway, but are we there yet?  Let’s see.

(Video: Motor’s running intro)

Unfortunately, our facilitator, Leah Van Poppel, is quite unwell and unable to make it today and sends her apologies to you all.  However, today we have the Victorian Council of Social Services Policy Manager, Llewellyn Reynders.  (Applause).

Good morning, everyone.  Thank you very much for inviting me to step in at the last moment.  I will do my best to stand in the shoes of Leah, who is well known to us having previously worked for us.

I’m the Policy Manager and we work together with our partners at Disability Advocacy Victoria to bring you the Disability Advocacy Resource Unit and have the amazing privilege of working with Melissa on a day to day basis. But this morning we want to have a bit of a conversation about where we are and how we got there.

So without further delay I’d like to introduce our panel.  Kirsten Deane is the Executive Director of the National Disability and Carer Alliance.  Kirsten is currently Executive Director of the National Disability and Carer Alliance and until recently was the national manager of Communications and Engagement at the Australian Federation of Disability Organisations and was a director in the Information, Linkages and Capacity Building team at the National Disability Insurance Agency.  Before joining the NDIA, she served as the inaugural Executive Director of the National Disability and Carer Alliance and the deputy campaign director of the Every Australian Counts campaign for the National Disability Insurance Scheme.  She also served as co-chair and deputy chair of the National People with Disability and Carer Council.  She’s been a long term board member of both Down Syndrome Australia and Down Syndrome Victoria, a former journalist turned academic, Kirsten has three children and as a result has excellent conflict mediation skills.  Welcome, Kirsten.  (Applause).

I’d also like to welcome Dean Barton Smith.  Dean Barton Smith AM has accumulated more than 30 years’ experience in the field of marketing and public affairs, strategic and corporate planning and advocacy within telecommunications, sport, government, retail, health care, mental health, professional associations, emergency management, transport, community and disability sectors, so just about everything.  After gaining his Masters in Marketing from Monash University, Dean served in a senior role in marketing and communication for a national telecommunications service organisation.  He has also served as executive officer for the Australian Communication Exchange and CEO of the Australian Association of Practice Managers, CEO of Community Transport in Victoria, CEO of the Mental Illness Awareness Council and CEO of Deaf Children Australia.  Dean was the Chairperson of the Australian Federation of Disability Organisations for over nine years and was closely involved in the successful campaigning for the establishment of the NDIS.  He is an active member of the NDIS Independent Advisory Council, providing high level policy advice to the board and Commonwealth Government.  Welcome, Dean.  (Applause).

And finally I’d like to introduce Les Cope.  Les is an administrator at the NDIS grassroots Facebook page and President of Ability Dignity Access Management.  Prior to his involvement with ADAM, a Victorian not for profit organisation whose main focus is empowering and supporting people with disabilities, Les was a founding member and chairman of one of 13 disability groups forming the Victorian Parent Advocacy Collective in the 1980s and 90s.  VPAC serviced school communities and supported children with disabilities to access local schools through the Victorian School Integration Program.  This enabled Les’s son to complete his VCE, after which he decided he never wanted again to be segregated.  Les continues to share information and empower others towards self-advocacy in his current role as administrator with the NDIS grassroots discussion Facebook group.  This complex group with over 30,000 members, including people with a wide range of disabilities, their families, community members and professionals, supports people with disabilities to understand, work with and navigate the NDIS.  Welcome, everybody.  (Applause).

I wanted to start this morning’s discussions by taking us back a little trip down memory lane to probably around 2010.  And Kirsten, I wondered if you could tell us a little bit about where the idea for the NDIS came from and how that idea started to percolate into the public.

So as one of the other speakers mentioned this morning, the idea for a National Disability and Insurance Scheme has been around for a very long time, since the 70s, but it started coming more to public prominence around 2008, 2009, and when it first sort of captured people’s imagination was when Kevin Rudd had the big ideas summit at Parliament House and Bruce Bonyhady and a bunch of other people took that idea to the summit and people started talking about it.

And around that time Bill Shorten became the Parliamentary Secretary for Disabilities and Bill   the first thing he did when he became Parliamentary Secretary was he went around the country and talked to people with disability and their families about the kinds of challenges that they face every day and what might need to be done about them and Bill has spoken about this quite a number of times and he said there were two things.  The first thing was that he was really genuinely shocked at what he heard from people with disabilities and their families and that even as a union organiser, he had no idea of the kinds of challenges that people with disability faced, how under resourced they were, the kind of discrimination they faced every day, the kinds of barriers that they faced in their everyday lives, and that there is a significant gap between the life outcomes of people with disability and the rest of the Australian community.  So he said on record a number of times that he was very shocked at what he heard.

The other thing that he said is what he heard was there was 1,000 different ideas of what to do about it and he basically issued a challenge to the disability sector and he basically said that from his union experience, the unions that were most successful in workplace negotiations were those that got the workers to concentrate on the 90% of stuff that they agreed on and agreed to park the 10% of stuff that they disagreed about.  Basically he said to the disability sector “if you want to resolve the kinds of issues that you’ve been telling me about, you’re going to have to get united and you’re going to have to get organised and you’re going to have to agree to focus on the 90% of stuff that you agree on and agree to park the 10% that you don’t”.

So three organisations in the disability sector – Australian Federation of Disability Organisations representing people with disabilities, Carers Australia, that represented families and carers, and National Disability Services, which represented not for profit, especially disability service providers-   got together and said, “Look, the NDIS is the one big idea, it’s the game changer, it’s the way that we will really change things for people with a disability and their families, but we’ll only get there if we all work together.”  So they formed the National Disability and Carers Alliance and once they’d done that, they went out into the sector and looked for other individuals and organisations who also wanted to see the NDIS get up and from that the Every Australian Counts campaign was born.

So work on that really started around the time that the Productivity Commission started their work in 2010 and then the campaign really kicked off kind of around 2010, the beginning of 2011.

Thanks, Kirsten.  Dean, in your experience being deeply involved in the disability sector at the time, what do you think really made that campaign successful and in a way that other campaigns haven’t necessarily done?

I think what’s clear looking back we were a united group.  The government have their own interest in specific areas, but from a government perspective, united, standing shoulder and shoulder to see a common agreement, exactly what Kirsten said, we have to agree on 90%, 10% we don’t agree and let’s put that aside and we’ll gain momentum.  That was very powerful at the start of it.  It’s trying to remember where we started in the first place, constant theme, we have to remind ourselves constantly why did we start in the first place, what the end game was trying to achieve.

The campaign, clearly we had disability groups, clearly we’ve had people with other priorities as well, but we had to talk about something that’s really bold, that was really transformational in that respect.  So the campaign, it was also those champions, people really, really supportive but didn’t know whether they should be part of it or not.  We needed to mobilise them as well to say 1 in 6 have a disability, sometimes 1 in 4, they’re all part of that process as well.

And I guess part of that campaign was not so much trying to fix the issue, it was economic benefit out of it as well.  That was a very successful part, or one of the successful parts of the campaign, economic investment, instrumental return.  It’s not a cost, it’s an investment.  When people started realising that and started to see there were returns from a social and economic point of view, we started to get more traction in that space as well.

Kirsten doing that campaign, trying to mobilise a whole community, the whole of Australia, trying to get on the same page, the same consistent message is so important and making sure that there will be some doubters out there, but how we actively respond to that in a positive sense.  I guess that was a lot of it and it was really heart warming that people stepped up, yes it is time to change, this is an opportunity now to really have a crack at this and it really worked really well.

Great.  You’ve been working closely with people throughout this period, Les, and I’m really interested in hearing your reflections on how the campaign worked on the ground and how have people experienced the change from the campaign into the scheme itself?

Kirsten already mentioned the campaign and being part of that too was a really remarkable experience, it was so empowering for the people involved in it and it was the way forward.  But one of the things I picked up along the way was that the Government or the bureaucracy really   bureaucrats in the system really wanted to hold control.

I put a proposal to put together a series of videos to support people to do pre planning that came up on a 10 year package I think they put together.  I had a discussion with them, we got 90% of the way there.  In the end it was denied for all sorts of reasons.  Clearly having that input coming in.

Pre planning is absolutely crucial to people to be successful.  The pre planning can take all sorts of ways.  I often say to people NDIS planning is planning about knowledge, preplanning is about individual planning for yourself so you live the life you want and have a future.

People are still grateful for what they might get.  I supported a woman to get a plan together for her daughter.  At the time it was $40,000.  I spent time with her and used Skype and chatted for a while and then I put the plan together, what her daughter needed to have a life.  We discussed it and she said how is it going and she was quite happy to go from $40,000 to $60,000, she thought that was reasonable.  When I told her a figure five times that she fell off the chair, she could not quite get it.  Once I presented to her the impact of her daughter having an active life and doing what other people, she understood.

People are still locked into the old system and they’ve still got that knowledge, that’s where people are thankful when the person on the phone says we’ll give you support and they get a bit more.  So pre planning is crucial and I think basically what everyone else in the community does and expects is the way to go and base it on the individual, not on the family or parents, but getting people to come in and think of their child or adult child needs is paramount for good planning and good outcomes.

We heard a bit about it in the opening video and we know access to information before you actually get into the scheme and engaging in the planning process is one of the key ingredients to a great experience.  So Dean, I’m really interested in your idea of what’s happening on the ground for people with specialised communication needs, such as the Deaf community.

DEAN BARTON SMITH:  I think the NDIA has certainly improved a lot in the last 12 months in terms of making sure that information is accessible across various needs.  We’ve got a large group of people who have diverse needs, not just providing interpreters, not just providing captioning, but making sure the content is as easily understood as possible.

As you can appreciate, the big change from what they might be getting currently with government support to the NDIS is language that people can understand and facilitate what they can be entitled to.  People still have a lot of expectations and they feel you get what they get, but don’t realise they can get a lot more.  Especially for those deaf and hard of hearing it’s a challenge because they’re using new terms, new words away from the old, I guess that’s also a shift in thinking, shift in mindset and the language.

So with the NDIA specifically with more information accessible, that’s not always enough.  So we need to be able to ensure that those who are not advocates as well but also support people as well to communicate that information for them.  So yes, it’s certainly a big improvement, language is really critical and to never assume that what you put out there is fully understood.  It’s making sure that the information is fully understood from there.

Fantastic.  As I guess was indicated in the opening video, we’re starting to see some I guess constraints on the scheme and some outcomes that may be less than perfect.  And Kirsten, I’m really interested in exploring what are the structural barriers, what are the things that are constraining the scheme that we need to be aware of and start thinking about as it rolls out?

I think there are lots of implementation issues that I’m sure are going to be the subject particularly this afternoon of everyone’s discussions and Les and Dean have alluded to some of them, but there are bigger picture issues that are confronting the scheme also.  One of them is the governance of the scheme.

Now, governance isn’t a particularly sexy topic, but it actually really matters because it’s about who makes decisions and where and when and how and the governance of the scheme is quite complicated.  It’s a shared enterprise, it’s a shared enterprise between the Commonwealth and the states and territories and in our federation, shared enterprises always have their pros and cons.

The pros are, to extend the metaphor today, when everybody agrees on the direction that we should be going in, what the destination is, how we’re going to get there, what kind of car are we going to drive, what kind of petrol it might need.  When everyone agrees, then the journey is much better and much smoother, we get there quicker.  It’s great when everybody is on board.

The con is when everyone doesn’t agree, you get into fights between states and territories and the Commonwealth and trying to get everybody to agree slows everything down.  And certainly the Productivity Commission that’s conducting an inquiry this year into the NDIS mentioned the complicated arrangements for the governance of the scheme and did say that it was contributing to slowing everything down and the NDIA not being able to be nimble and respond to things as they came up.  So that’s one of the issues.

The other issue is that it’s not always clear to people outside where decisions are being made and who is making them, so it’s not always clear whether that’s a decision that’s the responsibility of the National Disability Insurance Agency or whether that’s a decision made by COAG or whether it’s a decision made by the Commonwealth, whether that’s a decision made by the board.  It’s not always clear and that really matters because as advocates you’ve got to know who’s making the decisions so you can advocate for change.  I think that’s one of the issues that is really tough for the scheme.

I think one of the other issues that is really tough is something very dear to my heart, which is ILC, information, linkages and capacity building, and that’s the part of the scheme that the Productivity Commission used to call tier 2 and it’s that part of the scheme that is one of the foundations, it’s one of the foundation stones of the NDIS and it’s really important for two reasons.  The first is that ILC is supposed to fund all of that stuff that is not easily individualised but is really important to people with disability and their families, like good information, like good peer support.  They’re the kinds of things that should be funded in ILC.

And the other reason ILC is important is that it was always understood there would be some people with disability who wouldn’t be eligible for a package of support under the NDIS, but who would still have some needs that had to be met in some way, shape or form and that was going to be the responsibility of ILC.

Now, that sounds great in theory and so what the Commonwealth and the states and territories did was draft a policy that is this big, it’s a very broad, everything but the kitchen sink is in the ILC policy and then they released the budget, which is $120 million each year.  So the policy intent is broad and yet the budget allocated to it is very small.  So that’s one of the structural challenges.  If you look at the submissions to the Productivity Commission’s inquiry, everybody is mentioning that as a particular problem that is going to really haunt the scheme as it rolls out.

One of the other structural problems is the NDIA itself, that it’s become fairly evident that the NDIA doesn’t necessarily have the resources that it needs to roll out their scheme.  When we were on the campaign, the sector fought very hard for an independent statutory body to run the NDIA, not another Commonwealth department or an offshoot of Centrelink, everybody wanted an independent statutory body that could be nimble and flexible and responsive to changing circumstances.  Nobody wanted a big fat bloated bureaucracy.

So nobody wants to see more resources going through a scheme and providing support to people with disability and their families, but at the same time this is the start up.  We’re only four years into a lifetime and usually when you’re running a start up, usually you invest a bit more at the beginning and then tail that off and taper it off as you go along.  So it seems that some of the decisions that the NDIA make are a result of kind of their constrained resources and an attempt to kind of cost cut and also because they don’t have the arms and legs within the agency to do it.

So there is an issue in that I think if you look at the submissions that the Productivity Commission made, everybody is recognising that the NDIA needs a little more help to get this ground breaking reform off the ground before trying to peel it back and keep it to that very nimble, light statutory body that we all wanted to see.

Thanks, Kirsten.  And you talked a little bit about the complexity of rolling in eight different state based systems into a single national scheme and Dean, I wondered if you could tell us a little bit about how the experience in Victoria might compare to the rollout across the country.

The Victorian Government is very keen to make this work.  I think that’s one of the good things I found in that time.  There’s still challenges from an advocacy point of view.  We need to make sure that the system is national, not just from a state, deaf or hard of hearing, anybody with disability, they move around, the needs vary in that respect.  So it’s important that the advocacy aspect is more supported in that and because people need more information about those who have been through the process and found they’ve worked well that then want to share that story with somebody else and they don’t know how to use that mechanism.

I guess like to share the information and probably have about 30 different Facebook pages associated with the NDIS, but it’s good if everybody is talking about their experience and like to share their knowledge, I guess that’s a really powerful thing to have.  So keep that going because it’s something that gets missed out sometimes people with lived experience and living it every day and know what’s required.

So in Victoria there’s still a bit of work to go from the advocacy space in there.  There’s also those already in a government plan going into the NDIS.  Someone said to me a while back “I thought for so long the support I’ve got with the government now” (inaudible) misconceptions of those, I think there needs to be more work in that space.

In terms of other aspects, I’m still concerned about planners and local area coordinators, there’s still mixed reviews of those people who are going to people’s houses and finding out what they need don’t have the right competency behind them.  But to be fair on them, those local area coordinators want to have a peer group themselves to find out what is best for them because sometimes not everyone has one disability, sometimes there’s a range of others.  So there’s a knowledge gap in that space.  But they’re doing the best they can with the timelines rolling out, with the numbers.  So I guess those are the areas that need to be addressed.  We need to ensure local coordinators not just work in the sector, they actually live and breathe it.  I think that’s really important in that respect.

Sometimes in Victoria people have different entry points as well.  Sometimes they haven’t heard anything for two or three months, sometimes six months.  That’s an ongoing issue that we need to ramp up.  That’s a hot topic.  Independent advisory council and those people are not having a nice cup of tea, they’re very active, very robust and very vocal and to try to make this really work and it can work, it will take time.  I remind myself this is a life changing aspect.  We have to make sure we do it right as well.

You point out I guess the role of advocacy in the NDIS rollout and certainly we hear that the NDIS is changing the demands on advocacy and also plays out differently in different models of advocacy.  And Les, we’re interested in hearing your thoughts on how the NDIS is affecting the advocacy and particularly on different models of advocacy that are available.

Maybe I’ll pick up on grassroots and how that’s working because that’s clearly a case where you can get really good stories and you get really bad stories and you get stories that have absolutely nothing to do with what NDIS is about.

(Inaudible) all over the place, so we need to keep that on track, (inaudible) when people work through and share information.  People living in the past, not being able to move forward.

I share with you one comment I made to a participant last night.  This lady had been (inaudible) support for the last eight or nine months, she had terrible (inaudible) that was unsatisfactory.  She’s been fighting to get the support she wanted.  She put a post last night to say she had absolutely everything, life back on track.

I asked her if I could share what she had to say with the group today, she said that was fine.  In reflection, I thought this is not a place to talk about what people are getting, this is a place to talk about how we support them.  She has approved me to read out the comment.  My comment was this, “I won’t read your post despite it being so uplifting.  If it’s okay, I’d like (inaudible) hard, long road for you.  You were forced to turn corners, you had to regroup, you had to reassess (inaudible) actually getting funding which was remarkable.  You did not say no and you kept the NDIS honest and focused.”

That’s such a lovely story.  I think you’re right often those personal experiences and personal stories are the things that cut through in our advocacy sometimes far more strongly than a bunch of facts and figures.

Kirsten, you obviously have spent many years bringing different parts of the sector together to work together and I’m interested, we had such an amazing experience of coming together and working together and putting aside our differences to get the NDIS up.  What do you think might be the best way for us to kind of keep that spirit in the future as we deal with the implementation problems as they arise?

I think there are two reasons why the campaign was successful.  The first was that, as I alluded to, I felt that people were very united and organised and clear about what they wanted and clear about how they wanted to argue for it.

But the second reason I think the campaign was really successful was that yes there are some organisations behind it, but all of those organisations really did was facilitate the grassroots.  So I think the reason that the campaign was really successful is because people with a disability and families and people who work in the sector all got out and told their stories, told their stories about what their life was like now and what it could be like under the NDIS.

And so I don’t think   the campaign was not a traditional modelling campaign where very highly paid lobbied politicians in Canberra, it was because people with a disability and their families shared their stories with their friends, their neighbours, their community, their local MPs and shared what the current challenges were and more importantly how the NDIS would resolve them.  The NDIS was a really big, complicated, expensive thing, nobody knows what it’s really about, but what the campaign did is gave people a way to make a connection to it by saying here’s what the problem is and here’s how the NDIS will fix it.

So those stories were incredibly powerful and if you want to know how powerful they were, on YouTube you can see a number of the members of the Federal Parliament standing up in support of the NDIS legislation and they talk about the impact that it had on them meeting people in their local electorates and hearing the stories about what their lives were like.  Shamefully for some of them that was the first time they’d met a person with disability in their electorate and they weren’t aware of the kinds of challenges that they faced.

So I think those stories were incredibly important and it was the grassroots that made the campaign.  As I said, yes there were some organisations behind this, but it was people with disability and their families who were at the heart of this campaign, who were at the centre of the campaign and who really made the difference.

So I think there’s something in that about how we might go forward.  It’s the power of the stories and it’s the power of the grassroots action that really makes a difference.  It does require some organisation and facilitation in the background and where we find ourselves now, that’s tough because resources are thin on the ground.  There are looming cuts.  It’s a very challenging environment.  It’s a fast pace of change, there’s a lot happening, so it’s tough to say we’ve all got to get organised, but it’s probably because all that is happening the onus is on us to get even more organised and respond to them.  I do think again that it’s about what we can do to help facilitate people with disability and their families telling their stories about what is important to them and there’s no better people who do that than advocates.

Well said.  My final question, which is really a question for all of you and I want to give you all a chance to respond, but what do you think is the one focus or one big thing that advocacy in the disability community could be doing to make sure the NDIS gets where we want it and not be pulled somewhere else?  Dean, can I start with you?

Number one thing   I think where we are today with the NDIS is an example of working together collaboratively.  There are issues affecting people with disabilities every day.

I guess one of the things is I think the wider community thinking that now we’ve got the NDIS, it fixes everything, let’s move on.  It doesn’t.  The advocacy doesn’t stop, it keeps going.  We’ve got to keep that mindset, we’ve got to keep changing.  The NDIS is only one aspect, but it’s not everything we need from education, employment, to accessible transport, a whole range of things that we are facing every day and the advocacy is still a critical component going forward.  As was said here before (inaudible) we all have passion, we all have things that we want to see improved.

One thing that stood out for me when I worked for the awareness council, in the mental health sector, for many, many years we worked to being able to come together and work on a common cause but mental health is quite the opposite.  You had so many passionate people advocating individually, but to get them to come together was a real challenge to share common things that they want to achieve.  It just shows different dynamics and coming to me how do we advocate more successfully.  If you put the energy into one area, all the energy is put in, you’ll have more traction from that, you’ll have a sense of network that you have.  So don’t underestimate it’s not what you know, who you know is very powerful.

But just being able to work on a common agreed direction and do that very, very well.  We try to solve everybody’s problems at once, do it really, really well we’ll go a long way on that space.  That’s probably the one thing that would come from advocacy is don’t underestimate the power of advocacy and the power of being united and work on one common cause, put all the energy in that space we’ll go a long way.

Excellent advice.  How about you, Kirsten?

This is a really unique period in the life of the NDIS.  We have to bring in a very large group of people in a very short period of time and there is only ever going to be two ways to do that.  It was either going to be long and slow and drawn out or fast and bumpy and we’re in the fast and bumpy bit.

And I think that the kinds of things that are going to come up this afternoon is the kinds of things we need to work on, the planning process, the pre planning process, getting plans into action, driving change in the market, so we start to see the kinds of services that we want to see.

We do need to resolve the immediate implementation issues, but we also have to keep our eye on the bigger picture because where we are now is not where we’re going to be in five years’ time when everybody is in the scheme.  So we have to somehow work really hard at trying to fix some of the bumpy implementation issues while at the same time going what little change can we have now that will bear fruit in the future.  We have to have a dual vision where we work on the stuff happening now but keep our eye on where we eventually want to be because that’s again what was successful about the campaign is that it kept its eye on what the bigger picture was.  So we’ve got to kind of do that again.  We’ve got to work on the stuff happening now, but think about what can we do now that can bear fruit in the future.

Fantastic.  And Les, what’s your one big thing?

I go back to my experience with the advocacy collective back in the 80s and 90s.  That was probably the most powerful organisation I’ve been involved with because that brought together a lot of disability groups who all had a different focus, Down Syndrome Association, they were all together and worked collaboratively together to put together a process that would empower people and the whole thing about advocacy from our perspective is not an adversarial approach, it was empowerment, it was giving information, it was supporting people to use “I” statements   rather than saying “you’re doing this to me and you’re terrible”, rather “I don’t feel comfortable with what you’re doing, can we talk about how you might help me feel better about what’s going on?”  That was instrumental in terms of coming together and how we need to address things and that is the training I had then that I’m quite sure has held me in good stead to this moment.

It would be wonderful I suspect if all the disability groups could come together and at least agree on how they might work on this particular area, put aside their particular areas of where they’re coming from, but come up with common things instead of processes where they can then put together videos, some online material, put it all together and support people to be empowered and to make the best out of the NDIS that’s going to offer them a future.

Great idea.  We have a few minutes left for questions.  Does anyone have any questions of our panel?  And can you please   we do have some microphones and when you ask your question, please tell us your name, where you’re from and who you’re addressing your question to.  Does anyone want to kick us off?  There we go, Mary.

Mary from DANA.  It’s to Les really, but your description of in the 80s and 90s when those organisations worked together collectively and empowered people, it’s making us nostalgic I think for the way things worked once upon a time and it feels like it’s a long time ago now when it just feels like the whole environment had shifted somehow, the funding environment, everything, the way governments do things and fund things, the way the NDIS works.  It’s honestly like a different lifetime away and I don’t know, I just don’t know how can we get to that point where there’s capacity to bring people together instead of everyone squabbling over being competitors, that’s the trouble now.

Those organisations that came together at that time, right now at this very minute they will all be writing their own individual funding applications for the ILC or wherever they can get some money from and the capacity for people to come together is so limited.  It’s terrible and I wish it was different and I’d love to see where the energy could come from to shift that.

I don’t have an answer for that, except I do know what happened in the 80s and 90s (inaudible) actually was the prime mover and shaker of the whole thing, it was her initiative, it was her action that actually drove this.  So she was the person who pulled them together, she was the person who made sure they kept on task and she was the negotiator to make sure they were doing what we wanted them to do.  Without her, without someone to hold it together or bring it in, it’s going to be difficult.

I think it’s changed is very obvious, governments change, they have a different agenda.  I think the whole system of getting all sides of parliament to agree and to be committed is really crucial because without that it will move up and down like a yo-yo every time government changes.  And that’s what I’m seeing happening now in terms of the support being drawn and not really getting or understanding what the needs are and how they can work for us.  I hope that’s answered your question.  Sorry.

There’s a question down the front.

My name is Peter Ward.  I’m confused how somebody can ring somebody up and have a half an hour conversation and determine what their life is going to look like.  “Hi, how are you?” (Inaudible) maybe I have misunderstood what was said.

Just to recap, the question was about I guess a lot of people’s shock that this is how the planning process has been rolled out.  Do one of our panelists want to respond to how did that happen given the aspirations and expectations of the scheme?

I think it happened because of the issue of volume, having to bring people in, the large number of people in in a short period of time.  If you take New South Wales for example, New South Wales is the most populous state, yet it wanted to bring the most amount of people in in two years.

So I think that was the thinking behind it, that it was a way to get people into the scheme faster.  But we all know that that hasn’t worked terribly well and certainly the Productivity Commission has heard that and made a number of sort of draft recommendations about that.  And the NDIA have heard it in that they’ve been talking about how they’re going to redesign some of their participant experience based on people’s experiences and so they’ve signalled that we should expect to see some changes in the next while based on exactly how could you come up with a plan for a person’s life even a 12 month plan based on a short phone conversation.  So the NDIA say that they’re taking on board all of that feedback and we should expect to see some changes in the next little while.

And I think we’ll have more time to discuss planning and appeals in the next session, but we do have a question right down the front.

My name is Lorraine.  I come from a country area.  My day started this morning at 5am.  So one of the things that has been concerning a lot of people in my town is the NDIS for life and they’re very uncertain about what happens when they get to the age of 65.  So if any of you have any information to share about that, I’d be pleased to take it back home.  Thank you.

Les, do you want to take that question?

Yes.  If you are on the NDIS before you’re 65, you can stay on it as long as you wish to.  If you’re on say at 64, you can continue on until 70, 75 or whatever point.  You can choose whatever your circumstances.  You may choose to   you can stay on it from that point from thereafter.  Once you’ve turned 65, if you’re not on the NDIS, you’re not eligible to apply for it.  You then come under the ATS system.

I thought they had morphed it (inaudible) I thought that had changed.

I’m not aware of that, sorry.

SPEAKER:  (Inaudible).

That’s good news, but I don’t know.

We might come back to that issue.  I think there will be time in the next session to go into some of that detail.  I have a question here up the front and then right down the back over there after that.

You mentioned that there were people who sort of weren’t asking for enough because they were grateful for what they were getting.  On the other hand, I’d like to point out some cases I’ve run across where people have multiple disabilities.  So there’s one little boy in particular I can think of who was totally blind, he has autism as well.  His blindness needs were funded, his needs related to autism were rejected and as a result anything that would have been done to support him with the blindness needs would have been pretty much wasted because his needs related to autism meant that he needed to learn how to communicate from scratch and how to actually absorb what the blindness services were going to teach him.

I’m just concerned on the other hand that multiple disability is really not being catered for and I think one of the reasons for it is that there is this gap between the planners who are going out and actually meeting these people and the people who are approving the plans who’ve never actually met the people before and don’t understand the full context and I think part of that is you can have as much information on paper as you like, but it doesn’t actually make up for meeting a person and understanding their full context.  So yes, I just wanted to get your thoughts about that.

Dean, did you have any thoughts on I guess how the NDIS is dealing with multiple disabilities.

Face to face it needs to happen more often.  Over a telephone there’s so much you can help a person, so much to cover especially if you’ve been in a very fragmented system and your issue hasn’t been addressed or raised. There needs to be more face to face consultation with multiple disabilities because you can’t discuss in half an hour, have more regular planning.  I understand the next session talks about that space on the ground, gives ideas of his challenges being in that space.

So I totally agree they’re trying to meet the time line rolling out, a bit more time those issues and make sure it’s the right fit for them and to build on their understanding of what they can actually ask for as well.  Talked about expectations about that environment (inaudible) should be appreciated what they have, that mindset has to change and realise that they can be open to a whole range of things.  So yes, it’s an area that needs to be worked on a bit more.

Thanks, Dean.  Questions?  The gentleman with the beard and then that will have to be our last question because Melissa will get me in trouble.  I don’t want to keep you from lunch.

My name is Jan from Disability Advocacy.  It’s a bit of a follow up question from the gentleman beforehand.  I went to a forum just the other day and the information that was being shared was talking about people who experience complex communication or weren’t able to articulate their needs were at the moment looking like their package was as a general reduced by $30,000 as a result of NDIS, but if you were able to articulate your needs, the general trend was that people were receiving on average an additional $18,000 from their NDIS package.

My question is how do we mobilise as an advocacy sector to safeguard and protect particularly people with complex communication or that have complex needs?


My son has very extreme complex communication needs and that’s only one of the things that he has to struggle with each day.  We’re through a process where we have face to face, we made it clear having a phone conversation with him was not appropriate, he wouldn’t be able to respond.  We eventually got the planning meeting for him.

Most planning meetings- I’ve been to four now – require the planner to sit there and go tick, tick, tick and put ticks on the boxes.  I suspect what we raised earlier on about the complexity of disability, sometimes there’s not a box to tick, that’s why things are being ticked.  Have the planning meeting who was wonderful, we addressed all those bits and pieces, bundled together the complex communication needs, bundled together cognitive difficulties my son had and a whole range of things.

The gentleman over here who talked about the boy who was blind and had autism, I don’t know the planning process you had.  I guess if it had been articulated clearly in a document and given to the planner, what we also asked   what we also did when we handed the document to the planner, I’ve done this on every occasion, we actually asked the planner can we have a copy of the plan, they would say, “No, we can’t do that.”  So we got the standard response of no.  We said, “That’s fine, so we’re sharing a document, this is the document we want you to consider when it goes back to the NDIS.  We want this document to be considered.”

That’s a really strong, powerful thing to do because it means that first of all if the NDIS say “No, you can’t have that information”, we can appeal quite easily because we have the document.  If we don’t want to appeal and we have to go down the track of going to the tribunal, which we never want to do, but if you had to go to the tribunal, I don’t think the NDIS would look in a good light if you went to the tribunal and said “This is what we gave them, it’s very clear and they denied it.”  It’s a powerful thing to have it documented, to have it clear, to stick within the rules and know what you want to achieve with it.

I think we’ll get into some of that detail in the next session as well.  There was one final question, the gentleman with the beard.  That will have to be our final question for this session.

Hi, my name is (inaudible).  My question is about the LACs and the people that do the planning.  So my question is okay, how do we become an LAC and how do we become a person to help other people do and prepare their plans, so is there TAFE courses, is it university degrees, because I’m blind.  I want to know where I can go to be upskilled to help my community and then educate my community while I’m helping everybody that needs help.  So I suppose you’ve got to learn about the beast before you can walk with the beast before you can hunt with the beast.  So where do I go, who do I talk to?  Is it uni, is it TAFE, is it online, where do I go to help?

So the way it’s rolled out at the moment is the LACs, local area coordinators, have been outsourced to community agencies.  For example, in north east Melbourne the LACs are the Brotherhood of St Laurence.  In other areas in Victoria it’s Intereach or La Trobe Health.  So each of those partners are recruiting LACs according to what they see as the kinds of skills and experiences they want for their LACs.

So there isn’t one universal TAFE course or uni course that you can do because all of the LAC partners are doing it slightly differently.  If you’re interested in becoming an LAC, it’s about hunting down those agencies that are LACs in particular areas and seeking them out and knocking on their door and seeing how you might be involved in it.

Okay.  I want to firstly thank our panellists   Kirsten Deane, Dean Barton Smith and Les Cope.  Thank you very much for your time and for talking to us today.  I think the summary of our conversation is that in fact we’ve lived through a really powerful experience in coming up with the NDIS, in advocating and advocating in a way that I don’t think the sector has for a really long time to get that scheme up and now despite the fact that we’re encountering difficulties and problems and implementation issues, thinking back to the picture and thinking back to the ways we can work together to be a strong advocacy sector in order that this scheme reaches its potential.  Please thank our panellists.  (Applause).

I also thank Llewellyn for taking on this task at the very eleventh hour.  Thank you very much.  (Applause).

We now have an hour for lunch, so please be back at 1 o’clock for the next session.  There will be music, bands and videos and stuff, there will be lots of road and travel scenes, music videos playing on the big screen, so feel free to eat, chat, dance, we don’t judge.  Have a great time.  See you back at 1 o’clock.