Who’s not eligible for the NDIS?

This was the second session at the Advocacy Sector Conversations forum held on 24 November 2016 at the Investment Centre of Victoria.

Other sessions at this forum included:

Overview

The panelists represented people with disability who are either not eligible for the NDIS or who have complexities that make interaction with the agency difficult. A range of issues were raised, and information shared, however many more questions than answers were left in the air.

The panelists included:

Lauren Henley from the ‘My Aged Scare’ campaign representing people with disability over the age of 65.
Simone Allen from Victorian Mental Illness awareness Council representing episodic mental health conditions.
Alpha Lasimba from ADEC representing cultural and linguistically diverse people.
Jen Blyth from Deaf Victoria representing people who use Auslan as their primary communication.

At this forum, live streaming provided by VicDeaf was trialed for the first time and we are pleased to share the video from the proceedings.

Transcript

MELISSA COE:
Okay, we’re back a little bit early. Because we are having a bit of extra time for the office of disability this afternoon in lighted of their recent announcement yesterday.

Firstly, we’re short of volunteers. So if anyone would volunteer to run the microphone at question time please see Michael, who is just over there.

We know that if a person is over 65, has an episode of disability and is not an Australian citizen they are not eligible for the NDIS. There are also some services that will get swallowed up in the NDIS making them unavailable for those people already in the NDIS. I would like to invite our panellists to speak on those issues.

We are also waiting for Lauren Henley, a campaign leader for the My Aged Scare Campaign. SimonE, what do you see as the biggest issue for people with episodes of disability accessing support needs in the NDIS environment and how are services for the non-eligible people being captured?

SIMONE ALLEN:
Thank you for the question. There is not enough evidence of the NDIA understanding psychosocial disability, episodic or not. When someone is going through an episode there is a plan and funding in place, expecting a shift in the plan when things get worse is not going to happen. People might feel recover bud they are having to stipulate their worst case scenarios to get into the NDIS.

We are concerned that the board of the NDIA has recently been reformed and there is now not a single person on the board who has been declared with a lived experience of disability and we are definitely concerned there will be a lack of services for people who are not eligible despite assurances that no person would be worse off.

Mental health services are working in an environment of uncertainty to try to be ready for the NDIS but there is fear and confusion. There doesn’t seem to be much information for people with psychosocial disability who are participants in the NDIS and then have to make a choice between staying in the NDIS or entering the aged care sector.

MELISSA COE:
Jan, can you tell us what the national Auslan booking service is and how it will impact on people who need medical interpreting but don’t have an NDIS package?

JEN BLYTH:
Sure. Thanks, Melissa.

NABs stands for the National Auslan Booking Service, a government funded organisation. They provide interpreters for medical situations. For deaf and hard of hearing people across Australia. For instance, if you need to visit the doctor, the GP, if you have an appointment in a private hospital, if you are going to a physio, the provision of interpreters is provided by this organisation for free across the nation.

The introduction of the NDIS means it will have some impact potentially on the funding that NABs is allocated. So as part of your NDIS package you would also have to incorporate medical interpreting costs so that could have a major impact on the service provision of interpreters in medical situations. And specifically if you are over the age of 65. So it’s very contentious and very uncertain as to what will happen.

MELISSA COE:
Alpha, what are the biggest issues going forward for migrant communities accessing services?

ALPHA LASIMBA:
I think because we do have 50 per cent of our clients have for five years been in Australia or two to three years. Most of them are not eligible or they don’t have the necessary medical conditions or diagnosis,they do have a disability but they are not yet diagnosed in Australia to qualify for NDIS.

But the biggest challenge for us is to restructure the organisation and divide the team into those who will need us to transition to the NDIS and those who will remain working on a block funding basis now. For short, the NDIS and determining eligibility is quite difficult for someone who is new in Australia or not with English as their first language. So we are telling people this is the NDIS, this is the requirements. And this is the shift that is going to happen.

For example, if your son or anyone from your family has a disability, and the new regulation is that the ISP is likely to be rolled over to the NDIS, we have in the pre-planning. But the problem is for those who actually still don’t have ISP or DSP — it’s the problem there.

MELISSA COE:
A question for all of you. How are you currently supporting those who you know that are not eligible for the NDIS?

ALPHA LASIMBA:
For us, I guess, those who are not eligible for the NDIS, because we still have block funding so we navigate them. That’s what we do. But the problem comes for example if the block funding stops, no longer block funding, someone is not eligible for the NDIS, I don’t know what would happen there. Anyone?

MELISSA COE:
Okay. While waiting for Lauren to arrive — what needs to happen for your group to access services outside of the NDIS and what are the barriers to making this happen? We will start with Simone.

SIMONE ALLEN:
An assurance that there are services outside of the NDIS. Where would that funding be coming from and services and individuals focusing on getting ready for the NDIS. So how much attention is being paid to those not eligible.

MELISSA COE:
Jen?

JEN BLYTH:
Well, I guess what is happening with NABs specifically,, one of the areas that is problematic… Sorry, let me start again… Currently, we have aged care funding thats running in parallel to the NDIS funding. So we think that the aged care funding allocation should have been changed alongside the NDIS, but that hasn’t happened.

So that’s problematic in itself. So at the moment we’re looking at how we can work with NABs and the aged care provision to make this work out for people who are over 65 but we think it really does need a collaborative approach. If you are over 65, you want to be sure you can get access to interpreters in medical settings. The barriers are obvious, people in government don’t understand, they don’t understand the issues that People with disability have. And I think that would be true of everyone in this room, everyone in this room would have experienced that. So I think that education is key, teaching those government departments about disability and the issues that exist.

MELISSA COE:
Alpha, What needs to happen for your group to access services outside of the NDIS and what are the barriers to making this happen?

ALPHA LASIMBA:
I think I have a similar answer to yours. So the NDIS has rolled out last July, there is still room for improvement. The key thing as mentioned is the services organisations outside of the NDIS that continue to sit in services and also the advocacy agencies also continue to receive the block funding.

There must be some solutions for people who are not eligible for the NDIS. For us in terms of barriers, we do have — as people from a non-English background a barrier. For people to understand the services and also for the services providers to understand the people who need the services. So these are the key barriers facing people. So one way we’re trying to break that barrier and make the communication between the two groups easy.

MELISSA COE:
All right. Hello.

LAUREN HENLEY:
Hi, better late than never.

MELISSA: COE
Everybody, this is Lauren Henley, who is here to talk about the My Aged Scare Campaign. Lauren, tell us about the campaign and what are the biggest issues for this group right now in light of the new scheme and NDIS.

LAUREN HENLEY:
Firstly I will do my awkward blindy thing and find out where the microphone is…

The My Aged Scare Campaign aims to advocate for equality of support force older People with Disability who are ineligible for the NDIS and aims to provide information and peer support to older People with Disability who are ineligible for the NDIS.

Most people would be aware by now that if you are 65 years of age or older when the NDIS rolls out in your area you won’t actually be eligible for the scheme. If you are already a scheme participant, before you turn 65, then when you turn 65 you can choose to remain in the scheme if you like. This is causing a few different issues.

Over 65s were told initially when talking about an NDIS several years ago, that they would get the same level of support through the aged care sector but it’s not happening. There are a lot of issues. The largest one is access to information about what the arrangements actually look like. The government has injected millions of dollars into projects that are designed to let people know what the NDIS is, how it operates and how people can get the support they need, but there has not really been the same focus on the needs of older people with disability.

People are confused about how to get the support they need and they don’t really know what their rights are or where to go to complain when their rights are not being upheld. For example, one of the biggest differences between the NDIS and aged care system is the level of co-payment. So you don’t make any financial contribution towards your care and support need if you are under 65 and in the NDIS. If you are accessing support through the aged care system you are expected to make a co-payment towards your care and support needs.

There are protections in place to ensure that people can get what they need regardless of their financial situation, but the aged care space is so new to both people with disability as well as specialist disability service providers that we are seeing things go really, really wrong. We need to indicate to consumers about their rights so they can recognise when things are not going the way they should and act accordingly. There are also some work force issues that relate to the medicalised model of aged care services.

Aged care services are not really underpinned by the same social model of disability that underpins the NDIS and we are seeing a lot of problems resulting from the fact that staff across the aged care sector do not have the same level of awareness of the specialist needs of people with lifelong and severe disability.

The other thing I will mention is the waiting list. We have had people on a waiting list for the aged care system for 12 months and over. Whereas with the NDIS typically it’s a three month turn around from when you apply for the scheme to when you get your supports in place. They are some of the major issues I can highlight at the moment but happy to take questions on that later.

MELISSA COE:
Lauren again, what needs to happen for your group to access services outside the NDIS and what are the barriers to making this happen?

LAUREN HENLEY:
Look, I think there is a whole heap of things we could talk about here. It’s really inequitable.

When we talked about the NDIS back when the Productivity Commission was reporting in 2011, they said an NDIS was supposed to cover the needs of people whose disability was not acquired through the ageing process. So if you acquire a disability after the age of 65 it makes sense to me you should have your needs met through the aged care system. But if you were born with or acquired a disability early in life your needs are very different and the way you view yourself as a person with disability, is very different from someone who has lived a life without disability, turns 65 and then happens to acquire an age related condition after 65.

So I think there is some systemic work that needs to be done there and the Disability Discrimination Commissioner is backing that at the moment along with the age discrimination Commissioner at the national level which is fantastic. But in the meantime I think it really is around educating people about their individual rights, making sure that advocates across the sector know where to go when people’s rights are not being upheld and really trying to lift the quality of staff training across the aged care sector.

There is a review happening at the moment around aged care legislation. People can have a say around what needs to change in that space and the work force strategy is one element of what they’re looking at. I think the consultation period closes on 4 December. If anyone is keen to make a submission, please do.

MELISSA COE:
Okay. A question for all of you. We will start with Simone first: what can advocates do for their clients if they have been told their client is not eligible for the NDIS and needs services

SIMONE ALLEN:
So support their client and appeal eligibility. Because it’s a new scheme especially in the beginning stages we need to make sure they’re getting it right especially if they are trying to limit their spending and to reapply and appeal.

JEN BLYTH:
It’s a little bit hard for me to answer that question really, I think we don’t provide a service but we are strongly aligned with advocacy work.

MELISSA COE:
I want to add to that.

If a client comes to you needing medical interpreting and they are over 65 and they can’t access it because of the way the NABs is going how would you approach that issue?

JEN BLYTH:
Okay. Well, I know that NABs is committed to the interpreter provision for the next 12 months. Vicdeaf have also agreed to support those in the aged group of over 65. I can’t actually provide the interpreting service of course but I can help people advocate for ensuring that the provision occurs. So really NDIS changes the system and really it’s the system that needs repairing.

MELISSA COE:
Alpha?

ALPHA LASIMBA:
I guess there are two goals here, The ones that are not eligible, do not meet the eligibility requirements. So with those people we are trying to help them with other organisations still providing services outside of the NDIS. But because the whole system where we are in Preston, it’s a few months ago, and so far we have done around 15 NDIS, So we help them with the planning. Most of them were okay but last week we did receive two internal referrals of someone whose NDIS has been rejected.

To be honest, because the whole NDIS system is new, I personally referred one person to a contact of social security and probably they are going to contact them. If not they are going to call us back. So what we’re trying to do, if someone is rejected, we have processes there, but we try to refer to people that can help.

LAUREN HENLEY:
It really depends on people’s individual situation. Firstly, if someone narrowly misses out on entering into the NDIS because of their age — say for example if they turn 65 in the same calendar year that the NDIS is rolled out in their area there are early access provisions that may still allow that person to get into the NDIS.

The legislation is incredibly confusing, though so it may take a policy wonk to work through that in detail, and it is different in each state and territory. Firstly, if you have a client that you think fits within that criteria, may have turned 65 in the same calendar year I would encourage you to explore that further. The next thing, if your client is not already receiving services your best bet would be to try to support them to access specialised state disability support through state programs.

But because some of these programs are now folding because of the introduction of the NDIS you might still end up going the aged care route. If that happens make sure you know how the rules of co-payment apply and make sure you can go in and bat for your client around the co-payments to make sure they’re not going to be financially disadvantaged.

You can also assist them to access a hardship supplement if needed if they can’t actually pay for those co-payments. There is some information on the My Aged Scare Campaign website. There’s a page that is called ‘your rights regarding co-payments’. You can check it out. It will tell you what the basic daily fees are, how the negotiation around co-payment actually works. That may be a good starting point in that regard.

So next, if your client has a problem with an aged care service you can try to resolve it with a service provider. You can refer them to an aged care advocacy service. The one that operates in Victoria is elder rights advocacy. Or you can support them to lodge a complaint with the disability services Commissioner.

If you still don’t get a satisfactory outcome with that process you can lodge a complaint with the Commonwealth Ombudsman. So if your client is already receiving services they should still receive support.

The Department of Health is rolling out a new program called the Commonwealth continuity of support program. It’s a back of house arrangement. That means your client should not need to do anything to enter the program. It should just happen automatically. There are some providers that won’t be registered to provide supports under the Commonwealth continuity of support program, so if your client service happens to be one of them, it’s possible they may have to find a new service.

The Commonwealth continuity of support program does not kick off properly until next year. It’s similar to the NDIS in regards to how it’s rolling out, it will happen progressively over the next three years. Because of that, there is still quite a lot of unknowns. What I would suggest is people really need to monitor the support they are receiving and if it changes they should seek advocacy support or perhaps take it up with the Department of Health because the government has always promised that nobody would be worse off under the new arrangements. We really need to make sure we hold them accountable for that.

MELISSA COE:
We have about half an hour for questions. Fantastic. Can I please have a volunteer to run the microphone before we start? So raise your hand if you would like to ask a question to any of the panellists. Matthew?

QUESTION:
I have a question for Alpha. You mentioned that in your organisation — is interpreting part of the service at the moment?

ALPHA LASIMBA:
Interpreting?

QUESTION:
Yes.

ALPHA LASIMBA:
Look, we also provide interpreting services but I just don’t know the details, how that works, but I’m pretty sure that we use the standard interpreting services. But ADEC, I know, provides interpreting services. Even we were trained, for example I can translate from English to African language, my language. But there is a person that is responsible for that interpreting services is part of the services we have. I’m just not sure how that works or how the bookings are done.

MELISSA COE:
Anybody else?

ROBYN:
Hi. It’s Robyn Gaile from AFDO, Australian Federation of disability organisations. This question might slightly be out of scope but I may as well ask it.

When the NDIS was in its trial phase there was a program that enabled clients who had a complaint with the NDIS, once they’ve got a plan in place, and that program is called the external merits review program. Does anybody know if that program is now part of the full scheme?

LAUREN HENLEY:
Yes.

ROBYN:
Okay.

LAUREN HENLEY:
Yes, so my understanding is, yes, it is part of the full scheme. There is a different advocacy organisation or a couple in some states or Territories being funded to do external merits review. It can just be as simple as someone going along to an administrative appeals tribunal hearing with an individual or in some cases it can be more formalised legal assistance with a case. In Victoria it’s Rights Information Advocacy Services.

I think there was going to be an announcement in October regarding what the arrangements were for the broader roll out, I’m not sure if that’s actually happened, but, yes, the external merits review component is going ahead. They have changed the name of it and I can’t remember what they changed it to, but it is still there, it’s the same thing.

MELISSA COE:
Anymore questions?

QUESTION:
So if you turn 65 after your NDIS assessment would that matter?

LAUREN HENLEY:
No, because,well I would suggest not, because if you are having the assessment then you are already deemed eligible for the scheme. I would assume you would still get in. There are early access provisions that I was talking about as well. If you only narrowly miss out because of the fact you are turning 65 that calendar year, you should still get in.

ALAN:
I’m not sure who to address the question to on the panel, but in our transition to NDIS — we were informed that HACC services were no longer available to people that were eligible for the NDIS. So there are a few questions. Does that mean if you put an application in and you get knocked back, does that mean you are then eligible or not eligible? And it’s just total confusion whether we put an application in and have not got our funding, whether we still get our HACC services from our local council. So I don’t know which panel member would be able to talk about that.

LAUREN HENLEY:
Look, I have been doing a bit of scoping, mostly in New South Wales, so I’m not sure if the arrangements here will be the same in Victoria. But in New South Wales I know the state based arrangements will be in place for anyone who, for whatever reason, can’t access the NDIS but needs that support.

I have had conversations with Victorian agencies and they don’t seem to be able to give me a conclusive answer or, more to the point, they don’t want to. But I will monitor that and if at any point things change — as I said, you are meant to be eligible for this continuity of support arrangement. If you are getting specific disability services now, if you have access to those services now, I wouldn’t expect that should change. If it does then I would encourage you to speak to someone about it as soon as possible or look into it further.

WINNIE:
Hi, it’s WInnie from Children and Young People with Disability Australia. One of the pieces of information that I think it’s got on the NDIS website and various other places around when people are not eligible for the scheme is to get in touch with their local area coordinator if the scheme is rolled out in their particular area. I was wondering if the panel has any comments, feedback or thoughts around that process and how that system is set up for people who are not eligible for the NDIS.

LAUREN HENLEY:
happy to speak to that.

MELISSA COE:
You go ahead

LAUREN HENLEY:
It’s a bit haphazard at the moment. Local area coordinators are meant to be responsible for a very wide range of things. Part of their job is making sure that the needs of people, who for some reason are not eligible for an individually funded package under the NDIS, are still met, So connecting them up with other services.

What we’re starting to see happen in the roll out sites though is because the NDIA itself is just really being swamped with requests and assessments and plans and all those things, they have been outsourcing the planning to the local area coordination agencies. And local area coordinators at this point in time really don’t have time to do anything apart from assist people with developing the NDIS plan.

So while in the future hopefully they will be a really good point of contact for any person with disability, regardless of whether or not they are eligible for an individually funded package to go and make sure they can get the information and support they need, that is not really happening now.

MELISSA COE:
There was a question over here.

ROBYN:
In the most recent quarterly report from the agency they spoke about — in rounded off numbers it was around about 3,000 people were assessed as not being eligible for the NDIS. In part Lauren has kind of answered my question. But I thought maybe we could explore it a little bit more. So 3,000 people is a lot of people. That is people who are in a region where the NDIS is currently rolled out who have actually put up their hand to have an assessment. In terms of numbers of actual People with Disability who may or may not be eligible, it could be even greater than that number.

You have all spoken a little bit about providing information to people about what their rights are in the event that they are deemed ineligible. But could we just speak about that a bit more. I’m particularly keen to hear from Simone. As you are saying, with people with mental health conditions it’s not like you plan, well, hey, I’m gonna have an episode next week.

SIMONE ALLEN:
Yes.

ROBYN:
And when you are going through an episode of mental health the last thing you are thinking about is, “Hmm, so how do I plan for this to be better next time?” You can just talk a little bit more about how and when you engage with people so that especially in the event of them being deemed ineligible but they still have a condition that needs some supports?

SIMONE ALLEN:
I think we look at that case by case. When someone is unwell they obviously need support. It is a problem that they won’t be able to hopefully get their plan reviewed every 12 months and in episodic episodes — they will need it obviously more. I don’t know if I’m answering your question properly, though. No, sorry.

ROBYN:
Because I know that VMIAC is already overrun doing your work regardless of any NDIS issues. So where do people go? How can we ensure that people just are not staying locked up at home or out on the streets not getting the support that they need?

SIMONE ALLEN:
Good question. VMIAC — we are obviously a small organisation. We are ensuring that we provide services and advocates and education around the NDIS. The mental health is not being rolled out into the north eastern suburbs until May next year. So we are really probably not going to see the full extent of that until then.

ROBYN:
So, I’m finding it hard to not feel bleak. For people who are either experiencing mental ill health or people who are deemed ineligible, if they’re not able to go to LACS because they are overrun, and we are in a state of, I don’t want to use the word “chaos”, but disarray, those 3,000 people +, what can we, as in the disability advocacy sector, what can we be doing right now to support them?

ALPHA LASIMBA:
For us as I mentioned before, the process … from last week we did receive a few calls from people, their application had been rejected. And now we are just trying to work out — on the NDIS website there is a standard process for an appeal. But I know also there are people that are more specialised, like with social security issues. I’m waiting for them to tell us what would happen if someone’s application is rejected. For those who are not eligible, depending as you mentioned on case to case. But in some way or another they must be receiving some services at the moment.

But the only worry is that the services may not be long term services. So that is a case of current anxiety. But I think all of these problems — like after six months or one year we will have 4,000 or 5,000 people with a disability who have a need and there is no solution …

LAUREN HENLEY:
I wonder as well if we need to push the envelope a bit with the local area coordinators. I understand they are overrun but if you look at the ILC policy framework that establishes what they are meant to do, there is specific wording around there that they are meant to provide one-off or low-cost access to services and support especially if it’s for early intervention. Or if not providing that support would have some catastrophic effect on the individual.

So we need to be having a conversation with the LAC, if someone is not eligible for an individually funded package can we send to you and how can you help them. It says in the policy document that you will help them so what does that actually look like in practice.

MELISSA COE:
Anybody else?

KATHY:
It’s Kathy here. I just wanted to know what the group thought about health services like the Australian Unity and Mercy Health entering the NDIS support space.

MELISSA COE:
Who would like to answer that one?

LAUREN HENLEY:
So was it about the organisations that are doing local area coordination specifically?

KATHY:
No. The private health providers like Australian Unity. We’re talking about not eligible for NDIS., I mean, does anybody have a view as to what the future holds for those organisations moving into the space?

(everyone shaking their heads, no)

KATHY:
Maybe somebody else in the room? No? Oh well we’ll just have to see how it goes…

VI:
I suppose it’s probably more of a comment. But it could be a question, yes. Well, Melissa, I’m an advocate from Gippsland Disability Advocacy Service. Just listening to the panels’ conversation, our area we have not received the NDIS. It has not come to Gippsland till September-October next year, so we still have a fair way to go.

In the meantime, there are so many questions unanswered. From the diverse people that access our service, some of those questions we cannot answer. We just answer by listening to other areas where the NDIS has already rolled through. One of the areas that comes up is always, “What if I’m not qualified for the NDIS? What will happen to my support service?”

Also, we hear of a lot that we should not be talking too much to other people, and we are given tips. So we’re trying to prepare our client for it, I just want to ask the panel, would they have any tips or anything in preparation for us, for areas like us, where we are still waiting, in preparation for it, so we can better prepare the client, the people that come to us.

We often hear, they say, “Get your clients to have everything in order. Be ready to apply.” And have those things in place. When they do get the NDIS, it can be activated straightaway and if they don’t have those other things in place, then there might be some disappointment, because it takes time to put those things in place. I would just ask the panel if you have any suggestions or any tips for us in preparation towards it.

JEN BLYTH:
I’m happy to answer that question. One tip I have is keep asking questions, keep talking to organisations who have experience with applications and have experienced the NDIS. Or the NDIA. Keep talking to people. Sometimes when you contact the agency itself people don’t know the answer to our questions. So keep asking questions. Over time you will find answers.

I have been fortunate enough to live in north east of Melbourne which means I’m eligible for funding myself, so I’m currently going through the process of receiving funding, as well as educating people about how to access the funding and the packages. As well as talking to people who have experience and what funding may have been allocated and what things they have got from their package.

So I think it’s a continual learning process and continual discussions need to be had. I have certainly spoken to people who have been successful in their applications and then I am also experienced in that process. So keep having conversations with all of those groups and of course the agency itself. Keep talking. That’s my number 1 tip. Keep the conversation going

MELISSA COE:
I have received a few questions from our viewers.

ALPHA LASIMBA:
have one for you. I totally agree. But one thing is for those who have a diagnosed disability, try to put a DSR with the department. So their applications get approved before the NDIS rolls out in your area. If you have a DSR then it’s much easier for you just to rollover. Just concentrate on your plans, to get the documentation to put the DSR properly. That’s the easy way, yes?

LAUREN HENLEY:
Yes. My only comment is around the NDIS is making sure people know what their rights are. For example if they don’t have all of their paperwork in order and they get a phone call saying we want to do your planning meeting they are perfectly within their rights to say I’m not ready can we delay it a few weeks, that’s fine.

If they would prefer to do that face to face they can also do that. If they are not getting along with the planner they can ask for a new one. Making sure your clients are clear on what their rights are before they go into the process. For people who are ineligible I would encourage them to start talking to service providers now. About I’m over 65 and I won’t be eligible for whatever reason, what you can do to make sure I can still get the same level of support.

If people are getting a sense that the support may actually change, then that’s the time when you need to start looking at things at a national level and talk to the Department of Health about this continuity of support thing. Because if it’s not happening we need to make sure we fight that. Because no-one is meant to be worse off. That’s the bottom line.

MELISSA COE:
Okay. We have received some questions from people watching on the live stream.

One questioner said we are experiencing DHSS informing us that nothing will be offered until the NDIS rolls out. Our local region does not roll out until 2018. What can we do for our clients to ensure that they are receiving services until then?

LAUREN HENLEY:
That one is a really tricky one and one I had not really thought through, to be honest. It’s not something I have an answer to today. It causes me quite a lot of concern. I think, as a sector we, need to be looking to find an answer to that.

MELISSA COE:
The other one I received: How about all of the families providing support that now want help and are told to wait? What about the DHHS saying nothing will happen between now and roll out and to wait for the NDIS? People are missing out.

LAUREN HENLEY:
I know that there are early access provisions for other people, not just aged care. If it can be shown that that person really needs support and if they don’t get that support certain amount of time, then there will be quite significant results, I think, yes, there are early access provisions for people in those situations to say they can get into the scheme early. I don’t know the ins and outs of how that is actually being applied. There is a lot of policy that sits around that.

What is frustrating is there doesn’t seem to be any point of contact that can answer those questions around the early access provisions and how to make it work for your clients, because the NDIA, to my knowledge, does not appear to have the answers. We need to try to find out what the answers are. People should not be falling through the cracks.

There are early access provisions there for that reason so that the people who need the scheme the most can actually get the support when they need it.

FROM THE FLOOR:
I just wanted to add to that

Because we have been helping people go through early access and we’re having the same challenges of finding out where that point of contact is, but it’s DHHS who have the final call. But the person needs to have a priority wait listed DSR. So we are encouraging people outside of NDIS to call up constantly to get their DSRs currently wait listed so that if it rolls out in other regions hopefully they will get put forward first. But, yes, those priority wait listed ones that are coming through now.

JUDY:
This is Judy Smith, I work for Grampians Advocacy which is rurally based and has its geographic challenges that I’m sure many others will share. I have also been a teacher for decades. In this entire process regarding the beginnings of something such as the NDIS, it has been absolutely astounding. This is exactly how you don’t teach people how to do things. It’s where you start off with a trialling process and then there is no absolute model that has been developed as a result.

Interestingly, we have been observed internationally as to how we’re setting this in place. Yet it’s not even trickle down. I don’t even believe we necessarily have a model at the top that says let’s go in this direction. When I walk into my classroom of people who want to be future lawyers, teachers, politicians or jail birds, whatever it may be, how do you teach on that basis? To me it is anything that you don’t do. You don’t tell them to trial it. You want them to learn maths you don’t tell them to go out and play with a few things until they come up with a theory.

Here we are. I’m an advocate and I have challenges that include rurality where they can’t access medical attention and can’t get transport and people are too unwell. So at the moment people are wanting things such as face to face and are told to come to Melbourne. Are you real? It’s not going to happen.

As an advocate what is it I want to be told to do, want to be directed to do? I want a really clear set of objectives from my people. I spend time and talk to my people. What do you want to do? What do you want to do in three months, six months, five years, whatever it may be. One part of my working area is already in the NDIS.
Another part is about to come into it in January. Another part will move into it in October. So it’s like a set of steps.

There are even cases where people are moving geographically to ensure people can access it earlier if they move from one town to another. But where does that leave us?
Inevitably it leaves us in a situation where it’s all trial and error for us as well. It’s trial and error for us because we don’t have direction from the top as to exactly how to do these things.

We will do things like equip our people with — carry around an exercise book or some sort of notation device where you write down every contact you have had, every reference number from every phone call and get all of your notes in order, et cetera. I’m sure we’re all good at doing that.

However, what do we then do with them? One of the things I’m looking at is currently I’m across the three areas I work in is employment of the LACs and their staff. The enormity of the responsibility as has been mentioned earlier here by a panel member — is just overwhelming. Not only are they setting this entire process in progression but dealing with the ramifications of it and trying to set up an alternative program for them as well.

One of the calls is should we be looking at some sort of review on the LAC or should we be running a dual program? So we don’t only have the LACs that take us into the NDIS but also there is run a partnership program for those who fall in the cracks. I know we will be employing certain organisations to take people into the appeal process.

So there are three levels. Those who are in clearly. Those who are in the system, perhaps in the appeal system. And those who have clearly missed out. To me there are three prongs to this. I don’t believe we are getting the directions as to what we do with the three prongs because the responsibility for this is being hand balled out into different areas.

It’s a bit like the conversation from this morning about housing. When you have 40 different organisations who are looking into how you house our people in Victoria. It’s me running on a very similar basis. You split up the job into so many different areas nobody knows what the other person is doing.

On the positive side — we certainly have the moral compass and our direction. There would have been a smile on every face when the NDIS was given the thumbs up. But ultimately it comes down to money. We can have all of the positive statements and enthusiastic advocates we like but ultimately it will be the dollar sign. So 3,000 people are missing out.

I think we have to be clear on why they are missing out. Are they missing out because they don’t have the medical evidence there? They don’t have the disabilities or there is simply not enough money? So again amongst our questioning and I guess I have thrown a whole fruit salad into the discussion but it’s how I’m trying to perceive it em it. I’m trying to sort out how I take my people through this. I don’t have any immediate answers except that as has been mentioned earlier it is a case by case. But we will be dealing with tens of thousands of people.

Therefore I would like, if we have any capacity whatsoever, to be able to call upon even just reconfiguration of either who do we contact in case of and have a clear listing of that. Do we re-evaluate the roles being offered to the LACs? I simply don’t know how humans can actually do what it is they are being asked to cover at any given time. I don’t care what the money is. They are not being overly generously paid as far as I’m concerned, either.

The other one is, when we sit down — and we are just face to face with our own people and what it is that we tell them, to me there has to be some way of bringing this altogether and it is not clear at the moment. So my people … they will be coming to me on the phone and coming to me in the office. They will have pieces of paper and have their folders where they have been saving evidence for 10, 15, 20 years. Factor into that the fact some people will be going into their 60s and 70s and there is angst all round not only from the clients but also the people who work in the sector.

I guess all I could say is I reckon we should stay strong but I think we need to be questioning the role division that is currently being enacted within the NDIS and is it absolutely feasible? Because it’s no use us continuing with a charade where you — when it is simply not workable.

We have really good people here, we have the moral compass in the right direction, we have some funding, but is it time we need to be questioning who is ultimately making these decisions? And how do the people on the ground actually direct our people to get the services that they need?

Thanks for listening to my rant.

(applause)

LAUREN HENLEY:
Thank you for articulating that so well. I really love your idea in terms of restructuring the LACs bBecause I think the key problem for the over 65s as I have identified is information.

There is a clear communication strategy around the NDIS, what it is, how it works. There is no communication strategy in terms of what you do if you fall outside that. People are so confused and so scared. They have no idea where to go. At least if there was a separate little department that people could go to that actually dealt with those cases, that would help immensely.

The whole reason the my aged scare campaign came about was because people were freaked out. They didn’t know anything. They had no idea where to turn. We still don’t have all of the answers. I’m only one individual. Trying to sort out my way through this information as best I can. I am not a lawyer. I don’t know the ins and outs of the legislation and the government is making it really, really hard.

?ALPHA LASIMBA:
I just have a question. You know … people missing out, are they not those who are eligible or their applications, were they rejected? Are they in Victoria or in a specific area, the people that are missing out?

JUDY:
They are rurally based, they are under informed, because we are within the NDIS, we are employing people to go around and inform. The problem is these people will go out and they will inform but what they have to tell people is so limited. They can’t, a bit like all of us, they can’t answer all of the questions. In some cases they are sending people out into especially rural areas and they will be the only access to information. Yet what they carry with them is so incredibly limited. Not because they don’t want to try and tell it but simply because of the amount of information trickling down from the top.

Therefore we go into the area of misinformation and guessing and making assumptions. To answer your question I believe it’s the lack of information in the first place. I also believe it’s the lack of medical evidence in some cases because of the rural factor.

You are either waiting for nine month for an appointment from the only surgeon who might visit that part of Victoria or trying to get into something like in particular a clinical psychologist. How many of them grow in the country? Usually — bring them on. But if they are there, God bless their hearts. But they will have a waiting list that is at least six months long.

To answer that, I think there are at least three different reasons. I think it’s the lack of information. I think it’s the lack of medical evidence to back up their claim. Thirdly, I think in many cases it is the make do and thinking I’m going to wait until they get all of this sorted out type of syndrome.

MELISSA COE:
We have another question/comment from one of our viewers. People have been contacting DHHS to register on DSR but are being told they cannot register. A person I know was supposed to transfer a current package from New South Wales to Victoria but told she can’t.

LAUREN HENLEY:
Has that case been put to the minister for disabilities? I know that office is keen to hear about the people falling through the cracks. I wonder if it’s been taken to that level yet,

just to ask the question what are you planning to do with these people that can’t get an mid package for another two years or whatever but really need support now. I would encourage people to do that and write letters to the minister where possible and try and get some answers that way.

MELISSA COE:
Do we have any more questions before we break for afternoon tea? Nothing? Okay. Thank you. We will have afternoon tea for half an hour. We will be back at 2.20 to start the presentation on DSP. Thank you.

Author:: DARU
Date published:: Fri 25th Nov, 2016