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

Friday 15 September @ NAB The Hall

Revving up empowerment in the NDIS 

When

Friday 15th September, 2017: 1:00pm - 2:00pm

Where

The Hall

Speakers

Facilitated by:

Liz Wright, Disability Access Officer

Since its inception, a fundamental principle of the NDIS has always been to promote choice and control. This panel will investigate how empowered people with disability really are in asserting these principles through NDIS processes. Are goals translated into supports through planning and does ‘reasonable and necessary’ refer to need of the participant or the NDIA’s bottom line?

Photo of Liz Wright, Disability Access Officer

Panelists include:

Leah Katieva, CEO at Rights, Information and Advocacy Centre (RIAC)

Leah has over 30 years of experience working in community services. Leah has managed the NDIS Appeals and Advocacy Program in the Barwon region for the last 4 years during the trial period and now expanding into other Regions throughout Victoria. Leah also has a ‘lived experience’ of caring for a daughter with a disability and as such has an understanding of the need for advocacy and support for people with disabilities.

Photo of Leah Katieva, CEO at Rights, Information and Advocacy Centre (RIAC)

Tess McCarthy, Coordinator Policy and Research Unit, Office of the Public Advocate

completed her Master of Public Policy and Management in 2013, and before that she was at the Victorian Law Reform Commission where she worked on the review of the Guardianship and Administration Act 1986 (Vic). Tess has been involved in the disability sector for the past 8 years in both personal and professional roles. Tess is keenly interested in social inclusion, law reform and decision-making arrangements for people with cognitive impairment and mental ill health, particularly in relation to NDIS matters. 

Photo of Tess McCarthy, Coordinator Policy and Research Unit, Office of the Public Advocate

Gary Kerridge, NDIS Senior Local Coordinator at Brotherhood of St Laurence

Gary has worked in the disability sector for nearly 30 years. He has particular expertise in the Deafness area including Deafness and mental health. He has worked in s variety of roles across disabilities including management, community development, case work, project worker, advocacy and carer. He is a well-known advocate and social commentator across the disability sector in Australia. 

Photo of Gary Kerridge, NDIS Senior Local Coordinator at Brotherhood of St Laurence

Session Summary

Since its inception, a fundamental principle of the NDIS has always been to promote choice and control.  This panel  investigated how empowered people with disability really are in asserting these principles through NDIS processes.   Are goals translated into supports through planning and does ‘reasonable and necessary’ refer to need of the participant or the NDIA’s bottom line?

 

Transcript

MELISSA HALE:
Welcome back, everyone.  We are on our way on our NDIS journey today and now we are revving up empowerment in the NDIS.  Since it began, a fundamental principle of the NDIS has always been to promote choice and control.  This panel will investigate how empowered people with disability really are in asserting these principles through the NDIS.  Are goals translated into supports through planning and does “reasonable and necessary” refer to the need of the participant or the NDIA’s bottom line?  Let’s hear what is really happening on the ground.

(Video: Revving up empowerment intro)

MELISSA HALE:
Unfortunately our facilitator Trevor Carroll is quite unwell and unable to make it to the conference today. He sends his apology to you all.  However today we have Liz Wright stepping up to the plate to facilitate today’s session.  Liz is an access worker at Maribyrnong Council and also hosts the “Are you looking at me?” show on 3CR.  Please give a warm welcome to Liz Wright.  (Applause).

LIZ WRIGHT:
Hello, everyone.  How are you?  How has the conference been so far?  Great, good to hear.  Forgive me if I am a little under prepared.  I have large print notes and I’ll try not to stumble through them, but Trevor is ill and I’m a last minute ring in, so be kind.

Sorry, I thought you were introducing everybody.  That’s what my notes were saying, sorry.  Are you happy to do that, Melissa?  This only happens in this environment.  Sorry, Melissa.

MELISSA HALE:
First I would like to introduce Leah Katieva.  She’s the CEO of Rights, Information and Advocacy Centre.  She also has lived experience of caring with a daughter with disability and understanding the need for advocacy and support for people with disability.  She is also one of the amazing actresses you see on our videos today.  (Applause).

Secondly, I’d like to introduce Tess McCarthy, Coordinator of the Policy and Research Unit of the Office of the Public Advocate (applause).  Tess has been involved in the disability sector for the past eight years in both a personal and professional role and keenly interested in social inclusion, law reform and decision making around people with cognitive impairment and mental ill health, particularly in relation to NDIS matters.  I’m sure she has a lot to share today.

Last but not least is Gary Kerridge, who’s the NDIS Senior Local Coordinator at the Brotherhood of St Laurence, so please be kind.  His particular expertise has been in deafness, including deafness and mental work, and he works across a variety of roles in disability.  He is a well known advocate and social commentator across the disability sector in Australia.  So over to you, Liz.  (Applause).

LIZ WRIGHT:
All right.  So we’ve got the comedic stuff out of the way, we’re all here now, all introduced and all not talking to interpreters out of place.

Tess, I’m going to start firstly with you today.  It would be really great if you just gave a one sentence overview of your role at the office.

TESS McCARTHY:
I’m Policy and Research Coordinator at the Office of the Public Advocate and we undertake systemic advocacy on behalf of people with disability in gathering data from the program areas, including advocate, program and community visitors program.

LIZ WRIGHT:
Great, thank you.  Tess, I’m really interested in knowing what state those kinds of mechanisms do we have in place so that people attempting to do plans and navigating NDIS, what do we have in place to prevent people from being open to risk of exploitation or neglect or abuse in any way?  If you could talk on a state based level,  that would be wonderful.

TESS McCARTHY:
Yes, sure.  Firstly I want to acknowledge the traditional owners of the land on which we meet today and pay my respects to elders past and present.  I also want to acknowledge the personal experience and expertise in this room.  I look forward to discussion later also.

When we talk about state based mechanisms, both regulatory but also being personal and community based as well, but currently operating in the transition to the NDIS, so prior to the National Disability Insurance Scheme quality and safeguards framework being implemented.  So I guess we’re talking about enabling choice and control and then balancing that with freedom from abuse, neglect and exploitation.

And in terms of regulatory framework, we’ve got a variety of things, pieces of law I guess and policies that operate at the state level and these include community visitors, which is a program coordinated by the office, and the key objectives of community visitors are to protect the people who they visit from abuse, neglect and exploitation, also encourage social exclusion.

Other roles, the Disability Services Commissioner plays a role in complaints handling, conciliation investigation.  We have the senior practitioner who plays a role in authorising and monitoring use of restrictive practices, but also a variety of other roles.  There’s a variety of legislation, including the Disability Act, Guardian Administration Act, which establishes the office for whom I work, and Victoria’s Public Advocate is Colleen Pearce.  We provide guardianship services, advocacy investigation, and we coordinate for volunteer programs as well.

So pieces of legislation   I won’t go into too much detail, but they’re still relevant to protecting the rights of people with disability   include the Mental Health Act, two very important pieces of legislation which set an important human rights discourse which I think is really important for advocates to be aware of.  They can use as an advocacy tool in their discussions with whomever it may be.  That’s the Charter of Human Rights and Responsibilities Act and also the Equal Opportunity Act.  So there are also a number of national important independent bodies, the Ombudsman and the Victorian Equal Opportunity and Human Rights Commission, who are always strong advocates in this area and can assist I guess where approached and keep at it.

The important national policies and practice standards   the national disability strategy, the national standards for disability services and various Commonwealth laws.  Also another important advocacy tool which you would all know backwards and forwards is the Convention on the Rights of Persons With Disability and acknowledging that it’s a really important human rights instrument and it’s already been brought up today and I guess it really speaks to the question that was asked in balancing choice and control being equality before the law and balancing protection from abuse, neglect and exploitation.

So they’re two key articles and principles in the convention and something that my office deals with in our provision of guardianship services where we may make a decision on behalf of someone and it may be related to NDIS matters.  (Inaudible) of the person and respect as well (inaudible).  Importantly self advocates (inaudible) who can play a really important role (inaudible) independent advocacy, so everyone here and I encourage everyone to (inaudible) voice in this area (inaudible) comes with the NDIS (inaudible) important advocacy matters for people with disability and that’s in a variety of ways, (inaudible).

(Inaudible) a little bit of what the national quality safeguard framework is looking like now, (inaudible) complaints based and without access to (inaudible) as you know (inaudible) their rights not enabled, so it’s a really important part of the scheme.

I know that there’s been some recognition from state and Federal Governments for various levels of the recognition of advocacy and I just encourage everyone to keep at it (inaudible) it will be worth it.

LIZ WRIGHT:
We will be talking more about advocacy on this panel as well.  On the national front, there’s the quality and safeguarding framework that’s being developed at the moment.  That’s to provide consistency nationally, but it’s not ready to be rolled out until 2019 at the end of the complete rollout.  I was going to ask you what the strengths would be, but what do you see the gaps might be when this consistent framework is utilised?

TESS McCARTHY:
I guess one particular strength in the intention (inaudible) human rights approach and a strong system of regulatory and community based rights, so it would be great if that was available in other jurisdictions really, but I know what we have now will be lost or decreased in some ways with this new system that will be rolled out.  I’m sure many of you are aware that the national safeguards and more regulatory safeguards and there’s a quality and safeguard bill before parliament and it’s currently under inquiry.  So they’ll report soon in the September reporting deadlines.

They’re having public hearings into that as well.  That establishes the independent national disability insurance quality and safeguarding commissioner, as Gabrielle referred to earlier today, there’s certainly a lot of questions about the independence of the Commissioner and really the need for it to be more independent from the Federal Government, particularly its complaints function and its investigation into reporting indents of abuse as well.  They’ve got a variety of functions which isn’t decided yet, but they include a registration function, a complaints function, a behaviour support function, and also oversight of policies in relation to worker exclusion scheme.  So that’s all in one.

It would be great   at the risk of (inaudible) independence is really important in this area and I still think there’s a chance for change.  So keep advocating because it’s not decided yet.

But I guess something else that my office would see as a real gap is the role of community visitors.  We have over 400 volunteer community visitors in Victoria, independent safeguards visit houses where people may live where they may not have any other supports in their lives and they report back both on serious incidents of concern but also on community and social inclusion and they can be a real key monitor in are these plans being implemented, is a person receiving the supports in their plan, what are the gaps for this person as well, and then the possibility to then understand how best to work with the advocacy sector to enable people with disability to get the most out of the scheme is I guess one thing this framework is   that is a gap I would say at the moment.

And I guess really in the future discussions   Gabrielle was saying this as well   practice standards and rules, they’re not developed yet, so the report on a bill is very difficult, but in any development of that the first people that need to be consulted with are people with disability, people who will be affected by these rules and regulations, the change in the system and also bodies active and advocates, families, just like it was Kristen was saying believing the campaign was successful because it was driven by people with disability affected by this and know the most and should have larger say.  I think that’s the same in this quality and safeguards framework as well.

LIZ WRIGHT:
Thank you so much.  Leah, turning to you to ask you about what processes do we have in place so that when people are engaging in the NDIS and working on their plans, putting what they think is reasonable and necessary for their life, their independence and their choice, they get knocked back.  So what’s in place and how do people work with that system to get what they need?

LEAH KATIEVA:
I think it’s really confusing for people to start with.  The wording of the whole process for review is complicated.  We have what’s called a plan review, then we have a review of a reviewable decision.  Then we have an external review, and people get very confused about what they should be doing first.  Also goalposts change all the time as well. People are told they need to do a plan review before they can do an internal review and in other places they’re told forget the plan review

LIZ WRIGHT:
I’m wary now hearing that because it makes it   it seems exhausting engaging with the process that you want to get right and get on with it and there’s review, review, review.

LEAH KATIEVA:
I know.  We’ve said that whole wording maybe needs to be changed and I think they’ve actually changed plan review and I think it’s coming out to change of circumstances rather than plan review.  So they are working on that.  But yes, we work with advocates. Advocates often work with people to do an internal review and the internal review is pretty much putting down on paper why you think it was unfair that it wasn’t in your plan and giving your lived experience reasons for that and we always make sure that people give their lived experience reasons.  It’s really important.

And then to go through that process, it’s an independent delegate that looks at that.  It’s someone within the NDIA, but it’s someone that hasn’t looked at that plan before.  So it’s an independent person that looks at it within their system and then if they decide of course that it is justified, that they’re not going to fund it, you have the option then to appeal through an external review through the AT process.  So that’s quite involved as well.

Prior to the rollout, the Government funded what was called NDIS Appeals people and that sat with advocacy agencies mostly.  It’s been rolled out a bit further now.  So you have to put in an application to a central assessment processor and in that application you have to show why it’s complex and novel before they’ll fund (inaudible).

LIZ WRIGHT:
So at this stage (inaudible).

LEAH KATIEVA:
The application to the CAPS   it’s called CAPS   once that’s put in and approved, then legal aid is free.

LIZ WRIGHT:
Okay.

LEAH KATIEVA:
And the legal person works with the advocate at to go through the AAT process.  So the AAT process is also quite long.  It starts with a teleconference.  So there’s three stages of the AAT process and the very first stage is really just stating the facts about the case and each party talking about where they’re coming from.

The second stage goes to a conciliation process where everyone gets together and provides more evidence and talks about how they can conciliate the process so that everyone is happy.  And if that’s not decided in that process, you then go to a public hearing.

LIZ WRIGHT:
So you said this is a long process.  What would be an example of the length of time it takes?  I’m sure there’s people in the room going “I can tell you already”, but from the very start of the

LEAH KATIEVA:
From the very start of the review, there’s no limit on the time the NDIS has to do with the internal review, so for a participant when they first get told that they first have to appeal their decision of the first plan they’ve only got 28 days to get their application in for an internal review.  Once it’s in there, the internal review and the NDIA don’t have a time limit.  They can take anything from a month and I’ve had some that have gone for 8 months.

LIZ WRIGHT:
So that seems interesting to me that the onus is on the participant in the scheme (inaudible) their complaint in or their query (inaudible) doesn’t have the same onus.

LEAH KATIEVA:
No, they don’t.

LIZ WRIGHT:
Okay.

LEAH KATIEVA:
Then once it’s gone through the internal review process, you once again have to – is it 28 days, guys, to get it to the AAT? – So it’s 21 days from the first and then 28 days to the AAT.  And if you haven’t got it in by then, there’s usually a jurisdiction hearing to see if they can still hear the case.  So often what happens is people get their internal review back and it’s declined and then sometimes they don’t know what to do after that.  Usually the letters will state you can now apply to the AAT, but it really doesn’t spell out where they can get help or support to do that.  So they’re in shock for a while and devastated and by the time they think I’d better do something, the time can be done.

LIZ WRIGHT:
So there’s nothing in place for those letters returning to people not to have included within them a brochure, a pamphlet of where free advice, advocacy and support could be sought?

LEAH KATIEVA:
No, no, there’s nothing   in Barwon we as a network did produce a brochure with all the advocacy agencies that they could use and I believe that was given out at first, but I know as an organisation often takes their brochures down, but no one ever says they get them.

LIZ WRIGHT:
It’s really interesting.

LEAH KATIEVA:
They do say though on the letter, so you get a decision letter and it does state you can go straight to the AAT, it gives the number, that sort of thing, but it doesn’t actually tell you you have the right to ring a support person and that the NDIS support person is there just for that to be able to support people through the process.  And you don’t have to use the support person, you can go straight to the AAT, but you need to go through and prove that your case is complex and novel to be able to get support through legal aid.

LIZ WRIGHT:
Okay.  Thank you, Leah.

LEAH KATIEVA:
You can see people’s faces when they come to you, they’re devastated usually.  They really are devastated.  They’re looking for support and our job is to really listen, remind them that they’ve got rights, calm them down, let them know we’ll support them through the whole process, they’re not alone, and just really give them what their rights are.  There’s a whole deficit in trust with the NDIA at the moment.  It’s not a budget deficit, it’s a trust deficit, and advocates are dealing with that all the time.  We’re not counsellors, but we’re dealing with traumatic cases all the time.

LIZ WRIGHT:
These are people’s lives, so of course it’s traumatic and real and it is catastrophic when people are held up.

LEAH KATIEVA:
It’s catastrophic to those families.

LIZ WRIGHT:
Yes, it absolutely is.  I’ve enlisted Tess’s help to read the preamble to this question.  As I said, I am a ring in and I’d like to get the principles right.  If you could read that, Tess, that would be fantastic.

TESS McCARTHY:
So general principle 13 of the NDIS Act states that the role of advocacy in representing the interests of people with disabilities is to be acknowledged and respected, recognising that advocacy supports people with disability by promoting their independence and social and economic participation and promoting choice and control in pursuit of their goals and the planning and delivery of their support and maximising independent lifestyle for people with disability and their full inclusion in the community.

LIZ WRIGHT:
So how does this work in the complaints arena and how do people in the planning stage get to the stage where they can actually make their complaints, and I know we’ve touched on this, but how do people get through this and be able to make their complaints against the NDIA or disability support services if they’re not getting what they want?

TESS McCARTHY:
I think people get confused also about should they make a complaint or a review.

LIZ WRIGHT:
Yes.

TESS McCARTHY:
And often the complaint is about they feel they’ve been treated badly or they haven’t been given the respect that their case warrants.  So the complaints process is to the internal process once.  So once again usually if you go to the Ombudsman, he wants to know that you’ve already done it within the agency first, and then if you’re not satisfied with the result of that complaint, you can go to the Ombudsman or you can go to the disability Commissioner.

And as you can see, the Ombudsman, the complaints have skyrocketed and we try to work with those agencies as well.  But it’s really, really important that people remember that they own this scheme.  They’re the ones that own the scheme, not the planners, not the delegates, we own it, the community owns it.  It’s good to challenge, it’s good to make a complaint.  We’ve had over 50 cases at the AAT, and that’s been people being courageous and challenging the scheme and changing the scheme and that’s how you change the scheme in lots of ways, is by challenging, being courageous.  Some of the hearings have changed how the scheme operates and we’re going to see how it changes with the McGarrigle case, particularly as the reasonable and necessary supports are now meant to be fully funded under the federal ruling.

LIZ WRIGHT:
Great, thank you.  That brings me to you, Gary, and I’d like to talk to you about reasonable and necessary.  So the term “reasonable and necessary” applies to participants, but is reasonable and necessary about what participants in the program actually want to get or is it about the NDIA bottom line?

GARY KERRIDGE:
The short answer is, I don’t know. I am a senior local area coordinator, before we get on to reasonable and necessary I’ll give you background information so give me a bit of leeway, so I’ll come back to reasonable and necessary.  We do what we call (inaudible) planning.  We have a conversation with the participants, we meet them face to face, we look at the system, we find the best supports for them, we discuss it with them and we try to develop the plan with the participants.

For all the other agents how they do the plan is different.  Some do it over the phone, as you’ve heard, some of them do it using an outcomes questionnaire, some of them generate the plan on the computer using the data.  What that means is the outcomes of different plans are very different across the board, which is why you see a lot of reviews.  (Inaudible) Australian Health Alliance do it, I have never done an outcomes questionnaire, I’ve never done one over the phone, I’ve never automatically generated one on the computer, so I can’t tell you what happens when that happens.

I can tell you how I do it is with the participant and it shows when you have that conversation with somebody and when you actually get their input and get it into the plan and have them involved actively in developing that plan, it works better.  So that’s a bit of background.

As it is now, the NDIA have recognised that that pathway is not effective and they’re currently reviewing it and trying to come up with a better system so it works better.  When that will be ready or whatever, I don’t know.  I know in Canberra for the last few weeks they’ve been looking at it, consulting, researching or whatever.  I’m hoping into the future these different sort of variations of planning will change and will be more consistent.

Coming back to reasonable and necessary, we here in Australia- and this is Gary the advocate talking- are one of the few countries or possibly the only country that has a law of reasonable.  Whenever you have a law of reasonable, you will always have subjective judgments.  I can’t really see how you can decide reasonable.  It always comes back to the person.  It’s either prescribed or it’s somebody’s opinion on what is reasonable.

I’ll give you an example, I do a lot of deaf plans, I do plans for brain injury, physical disability, whatever, but usually deaf plans.  I have one particular participant who is a very, very bright woman.  She’s been to university, she’s got degrees, she’s started her PhD but pulled out, whatever, very, very bright woman.  She has chosen in her life to do a lot of work working with animals, working, she volunteers her time for the community to teach people (inaudible) really active member of the community.  She’s done that off her own bat for many, many years.  Now she’s decided okay, I’ve got that NDIS, I want to use the NDIS so I can do this better, so I can use my skills to make people better active members of their community.  So her contribution to the community is really immense.

So we worked out how much Auslan interpreting she would need.  You have not for profit organisations, big organisations, some cover some of  the cost, so working out reasonable and necessary, we’re always looking at all those things, what can a community organisation provide, what can’t they provide, have they got capacity, all of that sort of thing.  So reasonable and necessary is never clear cut.  But getting back to my participant, she needed, we worked out 342 hours of interpreting per year for her to do her job effectively and she’s given her time, she’s contributing I don’t know how many thousands, possibly millions of dollars to the community, and we had that with an answer of 90.  You’ve gone from 342 hours, once it’s gone to the NDIA it’s been knocked back to 90.

How you come up with that answer, I do not know.  I don’t think it’s always necessarily about the bottom line, no.  It is about sustainability because the NDIS has to be sustainable, but how they work it out what’s fair and what’s reasonable I couldn’t tell you how that’s done.  Typical support packages, I’ve never seen them.  It’s a fairy-tale in terms of reasonable and necessary.  That’s what we have to work with.

LIZ WRIGHT:
Whenever the term reasonable comes up, the counter is always unreasonable and that seems to be kind of where there is 342 hours, we just divide it by 4, it doesn’t make any sense.. what’s the rationale…

LEAH KATIEVA:
Reasonable and necessary, I think there’s five points that you have to meet and you have to meet all five of them before it’s deemed reasonable and necessary.  So I can’t remember exactly what those points are, but they’re listed in the Act and if you don’t meet two of those criteria, then it’s deemed not reasonable and necessary.  If you meet all five, it’s deemed reasonable and necessary.  So it is spelt out a bit more.

LIZ WRIGHT:
But do you still believe it could be subjective?

LEAH KATIEVA:
Oh God yes.  Absolutely.

GARY KERRIDGE:
When you look at reasonable and necessary as well, if you’re looking at the Act and the NDIS law, the NDIS principles, a lot of it was about investment.  So when you give somebody enough support, it means they can give back, it means if you give somebody enough support, a carer for example, their child, their adult person with a disability, that carer gets out into the community, works, buys things, and so on.  If you’re going to work out reasonable and necessary, we have to work out how much comes back and Productivity Commission says it’s all about investment and it all comes back to the community, but I think that particular principle has been lost in translation somewhere.

LIZ WRIGHT:
Yes, investment is key, it’s absolutely key.  You don’t look at that often the welfare word has been bandied about and people taking and being given to, rather than an investment in and then an investment back into the community, I completely agree with that and I’m supposed to be objective here.  What would you arm advocates with here, Gary, at the beginning of the process, when they’re going in to support someone, what would you say a key for them to be able to work with people as they’re in the planning process?  You’re an advocate from way back, you know some key things to talk about.

GARY KERRIDGE:
I would say the pre planning part is very, very important and you need to be looking at how the NDIS are thinking, how the NDIA thinks.  They’re thinking about community participation, thinking about capacity development and those are the two important things.  If you have a look in your plan that looks at developing capacity and you can justify that capacity with enough evidence to say somebody over time can catch a bus or someone over time will be able to participate, somebody over time using an interpreter will make friends, their mental health will be better, all of it is about that pre planning and developing your arguments and getting the NDIS to understand what you need to be involved in the community and develop your capacity to be in that community.  An advocate can help that, but you need to think about how the NDIS are thinking and use the language that they use and prepare, have evidence.  Don’t go in there without the evidence.

Unfortunately most people with a disability are not advocates, they’re just people that are living their life.  So when they get their letter from the NDIS, they have no idea who to contact, they put their trust in the planner and planners by and large are good people, I’ve worked with them and the people at BSL are good, experienced people, but you need to be prepared, you need to have the evidence there and you need to start thinking like the NDIS think.  And if you can do that, you’re part of the way of getting a good plan together.

LIZ WRIGHT:
Thank you, Gary.  We’re going to open to questions on the floor.  Obviously I can’t see any of you, but the roving mic people will have you all well in hand.  I guess you’ve been putting up your hands to get the attention of roving mic in previous sessions and direct to any of the panellists here on the stage today.  Do we have any questions?

PAULINE:
Yes, Pauline from AMIDA.  My question is to Gary I think and possibly to Leah.  I like your idea of think about how the NDIA think and in terms of reasonable and necessary, do we have any policy examples of how they think?  I know with the transport they’re obviously thinking and their policy was 75% is all we’ll cover.  What other policies have we uncovered that give us an indication of how they’re thinking?

GARY KERRIDGE:
I can understand how people would be cynical about how the NDIS think and I’ve had arguments as well.  You need to think   the NDIA will think about the bottom line of sustainability, they will.  They look at capacity building and they will look at getting people out in the community. They’re not bad people, not mean people, they don’t deliberately make decisions to make it difficult, but they have a principle saying who’s responsible in mainstream supports, what do we fund and so on.  Every decision they make with transport they will say what is reasonable for somebody to pay compared to somebody else.  The way they’re thinking is always along their lines.

With the transport and the McGarrigle case, this is a guy who has no public transport to anywhere, nowhere else, hasn’t got lots of options, he can’t move and live near Geelong.  The NDIA needs to  cover the cost of his disability and knowing that and thinking like them, that’s how you can win, but you have to be a really strong advocate to do that and as I said, not everybody is a strong advocate.  The advocates need to be thinking along those lines and we are told as planners follow the act, follow the act, follow the act, know the act, know the legislation as much as you can.

LEAH KATIEVA:
Can I just add something to that.  What we’ve found also and learnt from going through the court processes, the tribunal processes, sorry, is that they really want people to think about what the general public do and what’s reasonable   so everyone is buying an iPad, so you can’t ask for an iPad really because that’s what everyone does.  Transport   it’s reasonable to think that most people pay for their transport costs, and this was what comes back to us a lot.  So that’s how they’re thinking and then we have to show the other side of that and why that’s not reasonable to expect.

LIZ WRIGHT:
Another question?

JULIE PHILLIPS:
Thank you.  Julie Phillips, Disability Discrimination Legal Service.  I don’t know who wants to respond to this.  I’ve made a complaint to the NDIS once, which is not because I know a lot of happy campers who’ve received funding but just because it’s the only case I’ve been involved in, and we were unhappy with the plan and I sent an email to the planner, no response.  I sent a second email to the planner, no response.  I sent an email to the complaints line, no response.  I believe I did that twice.

Then I went to the Commonwealth Ombudsman, who eventually responded and said why didn’t I call and they would not accept my complaint because I should call and at that stage people were giving me horrendous stories about how long they had spent on the phone trying to contact someone.

At that stage I gave up and I’m pretty tenacious at the best of times, but I just couldn’t be bothered anymore spending any more time on it.  That was one and a half years ago, I’m still waiting for a response from the complaints line.  I’m just wondering what you think about empowerment of advocates and people with disabilities when you feel that the complaints process underneath you is so poor that you’re pressured, if you like, sometimes perhaps to not get the best that you want because you’ve got an inaccessible complaints process or one that takes so long that it’s virtually inaccessible.

LEAH KATIEVA:
We’ve had the same problem.  It’s very difficult to even make contact with anyone.  When it first rolled out, you were able to actually contact the planners and that really worked really well, but in the last year or so they’ve given us an email address that we have to send all complaints to and you rarely get responses back from that.  So we’ve had to go and sit down in the office so someone sees us, it’s got to that point.  But I agree with you, it’s   what’s the word, it’s just   you stop continuing, you get frustrated and you just stop continuing to feel empowered at all.

LIZ WRIGHT:
Gary or Tess, do you have anything to add to that?

TESS McCARTHY:
I guess I’d add even the Office of the Public Advocate, position of the public advocate, we also find it difficult and I know it would be harder out there on the ground as well.  A recent example of success we had was when the public advocate presented at a public hearing of one of the joint standing committees into the NDIS inquiry and she raised a particular matter and they really engaged with this matter.  Because of the public advocate’s position, I acknowledge that, it was able to go on the public record, the committee really engaged with this matter and, kind of publicly, the NDIA were held to account.  It was one of the complex matters that crisscrossed the number of service systems, the justice system, disability, kind of mental health, so it was like highly complicated, but I guess the fact that she had a loud public voice and it was on the record, they engaged with it by virtue of a lot of public attention, that was one successful example that we’ve had and that the person for whom we were representing, because of this long process that she had to go through, there’s not always good outcomes and it’s traumatising is a good word.

LEAH KATIEVA:
Very traumatising.  I don’t know that the staff on the ground realise the trauma, but as advocates we face it every day.  You might too, I’m not sure.  But it’s really burnout type of stuff for advocates as well because you don’t see change, you only see it when you go through that long tribunal process.  We rarely have the chance these days to make contact and just build relationships with the NDIA.

LIZ WRIGHT:
Gary, would you like to comment as well?

GARY KERRIDGE:
Yes. Just as a person with a disability, as a deaf person that’s been involved in the sector for a long, long time.  I would like to ask Australia and the system to stop asking me to complain.  I would like the system to develop some protections for us.  I am fed up in a system relies on me complaining all the time.

Very recently I
had an issue with a colleague who I was talking to on Skype and she asked me to call her, I pointed out to the colleague that I could not call her and that I needed to continue this conversation on Skype and she just disappeared, she just disappeared, I found out later she didn’t bother to let me know.  The colleague said to me you’ve got to complain about this, you’ve got to complain.  After 30 years I’m just fed up of complaining.  It’s time for Australia to really clean up our law, our disability law.  I’m really sick of complaining.  (Applause).

LIZ WRIGHT:
I agree too.  I’m sorry we’ve run out of time today.  I would really love to thank you, the three of you, for being here today, Leah, Gary and Tess.  Thank you very much.  I’m sure the three of you are available to speak with people after this session.  There seems to be a lot of trauma and grief in the room on something that has had so much promise and I agree with you, Gary, around protections rather than complaints because it’s a deficit all the time to be demanding what is essentially a basic human right.  Anyway, off my soap box.  Thank you for having us.  (Applause).

MELISSA HALE:
Thank you to Liz Wright for taking this on at the eleventh hour, like so many other people today.  That’s such a minefield of things to think about in terms of protecting those in the most vulnerable position and also learn how to positively take control of the process.  So thank you all for your contributions.  (Applause).

So we will now break for afternoon tea, so please be back in your seats at 2.30 to start the last session of the day.  Thank you.