This session was part of the NDIS and Advocacy conference held in Geelong on 4 December 2014.

Rosalinda Casamento, Lawyer, Victoria Legal Aid, moderated this session that explored different practical skills for advocates working within the NDIS framework.

The panel included:

 

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Transcript

DEIDRE GRIFFITHS:
I’m just going to hand you over to Rosalinda Casamento from victoria legal aid, a single lawyer who is going to be the moderator of this session.

ROSALINDA CASAMENTO:
Thank you and good afternoon welcome to the last session of today, which is a session to talk about advocacy tips and pitfalls. Hopefully the session will explore practical skills for advocates working within the NDIS framework.

Firstly I would like to acknowledge the traditional owners of the land on which we meet and pay my respects to their elders past and present. As Deidre said, I’m Rosalinda Casamento. I’m a lawyer with Victoria Legal Aid Commonwealth Entitlements Team. We run the social security practice at Victoria Legal Aid so we represent disadvantaged clients who are challenging adverse decisions of Centrelink and more recently we have begun to represent NDIS applicants at the level of external review at the AAT in novel and complex matters.

I’ll just introduce the members of our panel this afternoon. I have first of all Jai Phillips she is the Outreach and Information Manager at Communications Rights Australia.

Next is Ben von Einem, Ben is a disability advocate of long standing in private practice and also with Villamanta Disability Rights Legal Service. Ben appeared for the applicant in the only decided case so far in Victoria in which the tribunal considered the definition I think of reasonable and necessary support under the NDIS act. We hope that Ben will tell us a little more about his perspective of that case.

We’ve heard from Senior Member Handley so we will hear from the advocates of the applicant as well. We have Leah Kateiva and already been introduced to Leah this afternoon. She is an external merits review officer at REAC. Also we welcome James Keith an advocate also at REAC.

I might start by asking, at the very first session this morning Tina referred to when being asked about preparing a plan, not knowing what to put in a plan, she’d been asked that kind of question before so maybe if I asked James perhaps and then Leah. How do you approach as an advocate a potential participant who is dealing with that kind of challenge?

JAMES KEITH:
Okay thanks Rosalinda. I would probably say one of the best things you can do is understand the individual, the person that you’re supporting. Understand their disability and what is the impact of that disability on that individual because when the plan has been put forward then you need to make sure you’ve got the best supports put in place for that individual.

So when looking at their goals and aspirations if you understand the disability better than you would not have done, so do a little bit of homework. Then it does make a big difference when you go forward and submit your plan.

LEAH KATEIVA:
I’d add just the whole dynamic of the whole family as well, going out visiting them at home gives you a much better picture of what their circumstances are as well. We always try and do home visits.

The other thing that we’ve found is knowing everything you can ask for, every line item and the wording of that line item. So in the early days people weren’t getting case management because they didn’t know what…that had been changed to care coordination, they weren’t knowing to ask for it and certainly the NDIA weren’t promoting people to say what they need. They weren’t prompting. They weren’t saying did you have a case manager before. They were just pretty much writing down what the person said their goals and aspirations were. That’s changing a little bit.

JAMES KEITH:
Yeah I’d agree with that. I would certainly try and understand the legislation, what does that mean so you can go through the criteria and the legislation.

I think a follow on from conversations that’s been said today, I think lots of people should be aware of how to go through an internal review, how to go through a review, how to make changes/amendments to your plan. And use the right terminology because I’m sure there is lots of individuals who have a plan that doesn’t fit their needs at this time.

They’ve probably thought they’ve got a good deal which is great and that’s what we’re looking for is that individual to get as much support as possible but sometimes there might be some opportunity to review that plan.

I’m hoping through all the conversations that’s happened today people can understand they can get different changes made and seek the advice of advocacy. Again a lot of people have said to date advocacy, try and get an advocate.

To date we don’t get any extra funding from NDIA or NDIS or Government for my workload. Since August last year, 18 months I’ve had 47 cases, just with the NDIS nothing else just NDIS. 12 of those cases have gone to Leah for the external review and now I’ve got about 27 or 28 cases and three times I have had to close my intake because I ca not take any more people. So at this time I’m at capacity to try and help with advocacy.

It’s great everybody is saying take advocates, lets advocate and I’m all for it but we need more help and more resources to fund that as well.

ROSALINDA CASAMENTO:
Jai, could you add to that?

JAI PHILLIPS:
Yes certainly. So in addition to me being the Outreach Coordinator with Communication Rights I’m also the senior human rights advocate as well. This is where Communication Rights Australia did a bit of an overview of who we are.

We provide specialised advocacy and information, specialising in working with those with communication difficulties and little or no speech. And we have a human rights framework. We use the United Nations Convention as well as the Victoria Charter to inform our advocacy practice.

In relation to the question just asked or stated in related to advocates, ultimately there is a lack of funding and that’s a systemic issue, but the need for an advocate for an individual. What is the individual’s choice? So ensuring the individuals human rights are respected, their choice to make the decisions of who they want involved. As well, with the workload is an advocate necessary or is it our role as an advocate to be there when the system isn’t working on behalf of the individual, which leads to disempowerment if we’re there at the beginning when the individual doesn’t require the assistance.

They might only require information on how to navigate the system, what to do, how to ensure their human rights are met, how to ensure it’s not an economic rationalist perspective when they’re developing the plans to ensure what it is the individual needs on a day to day basis is being met, what questions need to be asked. This is where the individual needs to be well informed.

We need to know as advocates where to go, what to do, how to further skill up the individuals we’re working with when we’re asked the questions and ultimately networking with one another to ensure the individuals are receiving the services which they’re entitled to through professional advocates to get the best that they can get out of the NDIS.

LEAH KATEIVA:
I’m just going to speak, a lot of our clients are very well spoken. They know how to advocate they know what to say, they know the language and they still need an advocate.

I don’t know why that is but we have people that are Doctors, we’ve had people that they’ve got degrees and they still need an advocate. I’m not sure what that’s telling us because these people know their human rights, they know.

ROSALINDA CASAMENTO:
One of the issues I think that we’ve touched on around this process and certainly, Senior Member Handley referred to it in the context of the external review or the AAT proceedings is the evidence. He was talking about what was the evidence for me when I decided the portable diabetes pump wasn’t needed because this other device was available.

Can I ask those of you that have been involved how important is it to get that evidence to advocate well and get a positive outcome for your clients?

BEN VON EINEM:
Sure firstly I want to say that irrespective of the production being evidence having read the legislation and operational guidelines and as Senior Member Handley pointed out, the Productivity Commission Report the legislation is extremely conservative.

If you do go to the AAT, this is probably best explained by the example with the diabetes. A client had a number of conditions diabetes was one of those. We were seeking a portable oxygen pump. He was using an oxygen tank, which he lugged around with a device that weighed about 12 kilos. We went in there and one of our arguments and one of the objectives of the act is the act is designed to increase community participation for those with a disability.

That was sort of the undercurrent of our submissions. But you have a number of competing principles that are written into the legislation such as…and where we ultimately fell down on was because it was determined that what we were seeking, being a portable insulin device, a backpack, that would’ve weighed less than a kilo was better funded through the Department of Health. It should not be funded by the NDIA or NDIS.

Having said that that particular device was not fundable through the Department of Health. What the decision was at the end of the day was even if…it had been under private health insurance…

LEAH KATEIVA:
And that was the pump.

BEN VON EINEM:
The decision was in this case it was not fundable under the Department of Health, and even if…now you’ve lost my point of view.

LEAH KATEIVA:
Because they had a portable oxygen tank that was accessible and he could use they weren’t prepared to fund a backpack that would make it easy for him to get around.

They said it was already available, there was already a device. I think it was mentioned here it was identical. Well no, it wasn’t really identical. We were asking for a backpack.

BEN VON EINEM:
And this person was fairly house bound because of the sheer weight of the device.

In terms of evidence, we did have an expert, which gave evidence of the fact that this device was not fundable through the Department of Health. She was a senior person through Diabetes Australia and not withstanding that there was nowhere else that it could be funded.

The decision was that the scheme should not be there to fill gaps. That was very disappointing. It just went to show how conservative the legislation is.

In fairness to the members they do have to apply the legislation but what I found is that in reading this there is about six criteria in relation to what’s reasonable and necessary. It’s been established here. If the NDIA run with okay for example an argument that my client does not fit one particular category but fits all the other categories then the Tribunal will assess that as well and they might have a different view that the client falls short of another criteria. That’s how conservative it is.

ROSALINDA CASAMENTO:
Can I ask also about the experiences of the client going through that process and perhaps James, Leah and Jai you could also speak to your experience of working with clients who commenced that review process.

Do you agree with I guess the senior member was suggesting that it was a facilitative process non-adversarial? Is that your experience of the review process?

LEAH KATEIVA:
I think I’ve already spoken a little about it. It’s quite adversarial for a couple of reasons. As a lay person I think we have different meanings. I’m saying it’s adversarial but they’re saying it’s not because it hasn’t got where you have to swear on the bible and everything. There is two solicitors and a lot of toing and froing.

ROSALINDA CASAMENTO:
Would you say there are a lot of unwritten rules around the process?

LEAH KATEIVA:
Oh yes.

ROSALINDA CASAMENTO:
We as lawyers kind of get those unwritten rules…

LEAH KATEIVA:
I have no idea.

ROSALINDA CASAMENTO:
Perhaps an advocate coming in from outside who doesn’t have that might find that, never the less it’s still a good process to navigate.

JAI PHILLIPS:
Jai here, in addition to what you’re saying Leah as well, for our members, individuals with communication difficulties, first of all going through the whole process do they have a communication support worker, which is not a funded area? If they’re trying to apply for a communication device how is their voice met whilst trying to do that application in the first place to have their voice heard?

LEAH KATEIVA:
That’s our job I guess as the external merits. I know what you’re saying. Can I just say that everyone that’s gone through the tribunal has had a voice, has had a great voice, has had great cognition. We have not had anyone that hasn’t had a parent involved with an ID or mental health. We don’t know about those people, everyone that’s gone through so far or has come and wanted to go through has been able to speak for themselves. That hasn’t been tested.

JAI PHILLIPS:
I’m just thinking of the practical tips for you guys as well. Just going back to the Human Rights network with one another, getting in contact with one of us here to seek about ways of assisting the person that you’re working with.

We’re not alone, it may feel as though we’re alone as advocates out there yet we’re here for the individuals. It’s pulled together. Familiarise yourself with human rights charters and conventions and that’s where you will be able to argue in the first stages of planning’s, in the first meetings when the individual is first made aware of the NDIA and the processes. They can start thinking of what are my own human rights on a more global perspective not just housing, transport, support.

BEN VON EINEM:
I would like to clarify on that. I just don’t want anyone to be under misconception. Because it is under Federal legislation the human rights charter doesn’t apply. You can’t avail yourself to those provisions.

In terms of the degree to which it’s adversarial before you get into the AAT both parties are required to file written submissions in relation to their evidence. The members will look at that before you even get into the tribunal, they will have read it and pretty much it’s a process of calling evidence but evidence that’s called by the members themselves not the solicitors which happens in normal litigation.

In saying that there are a lot of similarities. I practice in Country Court level in civil litigation. There are a number of similarities. Look in my view it has to be adversarial because you’ve got two competing sides and got very conservative legislation. You’re required to make submissions.

I do agree with Leah that yes the person with the disability will be given a voice but I think ultimately it will come down to submissions that are supplied prior to unless something out of the ordinary happens.

LEAH KATEIVA:
Can I just say though I don’t want to frighten anyone off, we’ve had great changes for people challenging the system. Some of the changes they spoke about this morning have come from that.

A lot of our cases have been settled before it even gets to a hearing because the person has been able to display or let them know that changes need to be made.

I’ve got to say NDIA have taken that on board and made the changes. One of the changes I could talk about is the bundling. Has everyone heard about the bundling now? Well it was very inflexible. At one stage if you were getting a line item that said you could have respite or support during the week you couldn’t use that money for the weekend and vice versa.

But one of our participants that took that to the AAT actually got all that changed. They got it made into bundling so it’s very flexible now. It needs to be challenged.

ROSALINDA CASSAMENTO:
I think Leah what you’re saying is that advocates need to be fierce about these things.

LEAH KATIEVA:
Yes need to encourage people.

Ask for everything.

Yes ask for everything, go for everything.

BEN VON EINEM:
Yes one big tip that I’ve encountered in my experience is that prior to getting to the AAT, so just because an AAT hearing has been booked in doesn’t mean the case can’t settle beforehand.

What I have sort of come across is that there is a series of negotiations with the NDIA before the AAT hearing. They do want to settle believe it or not because their lawyers come down from Canberra. If we can settle it in any way, they will.

What I’ve found is that to give you another example, I had a client that her children were seeking 2 iPads. That had been denied at first instance or at the internal review and also the next review. We were set to go to the AAT. At the final conciliation conference what I thought was okay what they had written was that we had evidence with two reports from a speech pathologist and also an OT saying an iPad would be a benefit for these two children. Despite that, they were sticking to their guns the NDIA and weren’t going to fund it.

What I did was say okay then and the basis upon which they rejected it was that we’re only going to fund an iPad if there is problems with expressive language. My clients had problems with expressive language but in these reports it wasn’t specifically tailored to that problem. What I did was say to them how about we get a fresh report, you type up some terms of reference about why you say you’re knocking back funding for an iPad so thereby we can go off and get another report specifically tailored to address that shortfall or the problem as to why they’re rejecting it.

That case settled and that’s the approach I’m taking from here on in. Is that a good way is to find out, because you get these reasons, they’re about half a page or a page as to why it’s not going to be funded. But you want all the particulars, you want more than half a page or a page. You want to get into the nitty gritty of why they’re rejecting the funding. I’ve asked for further and better particulars before, that’s not enough.

What I’ve learnt is if you get the parties in a room and ask for a terms of reference report or for them to come up with terms of reference in relation to getting a fresh report that specifically addresses need then I achieve great results. That’s a bit of a tip.

LEAH KATEIVA:
I might say too from my own experience, if you can mount an argument, that the initial reason for rejection wasn’t clear and you apply for information as to why that’s the case, the NDIA will provide that. That can actually be a springboard for you to request further reports, which in fact might ultimately lead to success for your client.

JAI PHILLIPS:
And that’s why I’m saying as well just to network with your peers as well to establish what are the terms of reference as Ben was saying as well. To avoid that long and traitorous process for the individuals we’re here for. As we all know, it’s extremely exhausting for them and they choose to decline taking matters any further at times as well because it’s emotionally exhausting.

LEAH KATEIVA:
Yes and we’ve had clients that just can’t do it. Just have to withdraw. But others they’ve come out and stood up and it’s been an amazing transformation. It’s wonderful. But James has such good results by just going into the meetings. Do you want to talk about that?

JAMES KEITH:
Yeah I think most of the issues are the lack of service whatever that may well be for that individual has been a positive experience at the end of it.

What I would say is I’ve had one case where the individual spoke to me on the Monday, I advocated for them and we had a resolution on the Friday. That’s the quickest I’ve had in a resolution to help that individual and they got what they wanted within the package.

The planner who came out was absolutely fantastic. He has done a really good job. He made sure everything was met for this individual.

I’ve also got other cases that I’m probably 3 or 4 months into and I’ve probably got a good couple of dozen over the piece we’ve been doing that takes such a long time. You have to try and make sure the individual understands it may take a long time but you have to try and advocate with them, for them, beside them and give them the strength to go forward.

There has been lots of individuals who come into the office, you’ve explained things to them and they say I can’t do it and just walk away. You have to give them the opportunity to maybe think about it and come back. I have gone through many boxes of tissues in my office where people have been absolutely distraught and I have fed it back to the NDIA.

I told them you have to realise the stress and the strain it puts on this individual, their support systems, their mechanisms, their families, carers and they’re walking away because they can’t go any further with it.

ROSALINDA CASAMENTO:
Are there any questions?

QUESTION:
This is a question for Leah and Lance. Those meetings you’re talking about where you’re getting those successors that’s at the planning stage of the process with the planner?

JAMES KEITH:
Yes, there is two stages. The plan, to try and go through the plan with the planner or the local area coordinator at whatever point we’re in, to try and get a resolution at that point. I do get a lot of success at that stage but sometimes we have to go for an internal review to see if the NDIA will review the decision of the service or the support that that individual is looking for. At that point, we get resolution sometimes as well on a positive scale.

JAI PHILLIPS:
And likewise with communication rights. Whilst in those initial stages in the planning and that’s where we’ve utilised the human rights framework to breakdown the… or in accordance with the NDIS. With the reasonable and necessary supports, we’re articulating that in a human rights context as well to identify it’s not just, a whimsical desire for the individual it’s a necessity for them to have what they’re requiring at the planning stages to eliminate the long and tedious process.

ROSALINDA CASAMENTO:
There is another question.

QUESTION:
I thought Ben said that swatting up on human rights charters etc.

JAI PHILLIPS:
That’s going through the AAT process on a Federal level in the interim stages as well. So we use the Victoria Charter, which is the legislation, the UN Convention.

QUESTION:
But didn’t Ben say this is Federal legislation, forget it?

JAI PHILLIPS:
But still in the planning stage is to identify the necessity. We’re just letting you know that is what is working for us.

This is where we’re referring to the United Nations Convention on the rights of persons with a disability, which is an international convention, which Australia ratified in 2008 therefore that stands up at a Federal level in the Federal courts.

And as advocates as well to utilise other pieces of legislation through speaking with Villamanta and other legal services as well to use your Disability Discrimination Act, Disability Act, your Equal Opportunity Act and whatever other parts of legislation. If it’s in relation to education or CRU’s or whatever it might be, utilising other parts of legislation, human rights and international conventions. I hope that answers your question.

QUESTION:
Hi this is George from YDAS. I’m a bit confused. The reason I’m confused is Jai and Ben you’ve had a little fight conversation there where Jai, you said this is human rights convention, Ben you said no that doesn’t apply. Is that correct how I heard it? You said human rights laws don’t really apply in the…?

BEN VON EINEN:
I should’ve clarified that. Pre AAT….

QEUSTION:
I wasn’t being flippant or serious. When we were with DHS we find using the charter and using the convention we got a lot out of doing that. Is that not the case?

BEN VON EINEM:
No once you’re in the AAT the Victorian Charter doesn’t apply.

JAI PHILLIPS:
Because it’s specifically for the state of Victoria.

QUESTION:
But they’re residence of Victoria.

BEN VON EINEM:
I know but because the legislation itself is Commonwealth, you can’t use the Victorian Charter.

JAI PHILLIPS:
However, you can use the United Nations Convention on the Rights of Person with a Disability because that’s international.

QUESTION;
How does that fly, does it fly?

BEN VON EINEM:
My view, it wouldn’t fly well in the AAT. They would primarily be looking at legislation itself.

JAI PHILLIPS:
That’s where you back up your human rights argument with another piece of legislation to formulate your argument and a necessity for the individual.

QUESTION:
Wow.

JAI PHILLIPS:
That’s why I’m saying network with one another because it’s a minefield and it takes a while to understand.

BEN VON EINEM:
Look, certainly at the AAT level I would be directing anyone to actually gathering evidence before they start spruiking off human rights arguments. That’s my experience having been through an AAT hearing. But certainly pre AAT, once you’re in the process of working with the organisations use everything you can.

JAI PHILLIPS:
Including policies, including standards, including everything if you’re working with a public entity.

QUESTION:
Can I just make a comment? It’s Carol from Baron Disability Resource Council and we’ve also got advocates and members of BDAN and most often we’ve found that the internal review process is working for our clients and participants because at a local level we can get down there and talk to the planners. To be frank we haven’t raised a lot of human rights issues because it’s about what’s in the individuals plan and what the individual wants to achieve and then we work on that issue. It’s often about one aspect of a plan not a whole plan. It’s not that they’re not getting their rights met its there is one particular item that needs clarification, support and perhaps further assessment. In the end it most often comes. Obviously, there is a few we’ve got issues with and particularly clients with mental health issues. We’re still working on a lot of those. I just wanted to add that from another fellow agencies perspective.

LEAH KATEIVA:
I would like to say we do that as well but there is a lot of people made ineligible who then go on to an internal review. I guess they’re the ones that have gone on to the AAT as well.

ROSALINDA CASAMENTO:
Thank you everybody. It’s nearly 4.30 and Robyn has come and given me the wind up sign. If you wouldn’t mind thanking our panel this afternoon.

(applause)

LEAH KATEIVA:
I WOULD LIKE TO THANK OUR MODERATOR TOO.

 


About Rosalinda Casamento

(add updated bio)

 

 


About James Keith

Photo of James KeithJames has been working in the disability sector for the past 18 years, firstly in Scotland with Scottish Autism, supporting individuals with Autism in adult training support services, residential houses, respite and outreach. James then worked within an adult training support service for the local council before emigrating to Australia.  James’ first job in Australia was working with a local adult training support service for three years. He then started a position with Amaze (Autism Victoria) in the training and information department, providing information within Australia and Victoria and training all over metro and regional Victoria. James has been working with RIAC for the past 18 months, supporting individuals with a disability in advocating for themselves or on behalf of them. This support has been varied from housing, NDIS, Centrelink, schools and many other issues.

 


About Leah Kateiva

photo of Leah KateivaLeah Kateiva is the Senior External Merits Support Office and Manager of the Geelong  Rights, Information and Advocacy Council’s Geelong office. Leah is responsible for supporting participants seeking a review of the NDIA through the Administrative Appeals Process. Leah has extensive experience in disability having worked in Community Services for the past 25 years in both family and disability services and having recently managed the Commonwealth Carer Respite Centre, Shepparton Office for 10 years before moving to Geelong for a sea change.  Leah has been a volunteer advocate for people with disabilities in the local community for as many years.
Leah is passionate about supporting people with disabilities to understand their rights and to empower them to self-advocate when they have a need to do so.

 


About Ben von Einem

Ben von EinemBen von Einem is a casework and policy and law reform lawyer at Villamanta Disability Rights Legal Service Inc. He has also worked in private practice and as a university lecturer, published legal publications and has particular expertise and experience in the area of criminal law. Ben is a member of the Law Institute of Victoria, the Geelong Law Association and the Federation of Community Legal Centres’ Reference Group on “Making Rights a Reality for Sexual Assault Victims with Cognitive Impairment”. Ben appeared for the applicant in the only decided case so far in Victoria in which the tribunal considered the definition of reasonable and necessary support under the NDIS act.

 


About Jai Phillips

photo of Jai Phillips Jai Phillips is the Senior Human Rights Advocate and Community Outreach Coordinator at Communication Rights Australia. She’s a human rights specialist and an expert in rights within education settings. Communication Rights is the only specialist advocacy and information service within Australia, which works in partnership with the community to represent the interests of people who have communication difficulties and little or no speech. It offers free advocacy and information services with a human rights approach. Communication Rights services are designed to break down barriers, promote inclusion and remove discrimination.