This session was part of the NDIS and Advocacy conference held in Geelong on 4 December 2014. What happens if someone is not eligible under the NDIS? What other options are available to them, and where can they seek assistance? Michelle Stevens moderates a panel discussion with:
- Elizabeth McGarry, CEO, Association for Children with a Disability
- Kate Carroll, Advocacy Officer, Barwon Disability Resource Council
- Deb Connock, Manager, NDIS Transition Team, Department of Human Services
- Marcia Webb, Manager for Community Organisations, Department of Health
Listen to podcast:
Transcript
ROBYN GAILE:
This is session 2 and the title for this session is “What happens if you’re not eligible for the NDIS?” What are the options available, and where can you seek assistance. Michelle Stevens will be the moderator for this session, and i’ll provide any support that she might need throughout the session, and we will have question time after the panel members do have their opportunity to speak.
Let me introduce Michelle Stevens to you. Michelle, in 2010, achieved a Bachelor of Arts degree and a Graduate Diploma in Deaf Studies and Languages. She’s currently the acting president of ADBC, which is the Australian Deaf-blind Council, and Michelle is one of the founding members of Deafblind Victorians. Would you put your hands together and welcome Michelle?
MICHELLE STEVENS:
Thank you very much, Robyn. I’m just going to check before we start that if interpreters are ready, if you need any adaptation to your hearing loops, please that that can be done. As before, can we just remind everyone that when it comes to question time, please state your name and your organisation, so it makes it easier for everyone including when they’re going to put this on the site and for recordings later on.
Welcome to the session. As Robyn said, what happens if you are not eligible to receive the NDIS? Where from here? We have a very knowledgeable panel on my left-hand side your right, my left. We have a very knowledgeable panel, and to save time I’m going to ask each and every one of them to introduce themselves, and also a very quick sort of introduction and then we will start to the nitty-gritty of some of the questions. So can we just start firstly with the closest person next to my interpreter?
ELIZABETH McGARRY:
Thanks, Michelle. Hello everyone and thanks for the opportunity to be here today. My name’s Elizabeth McGarry. I head up the Association for Children with a Disability.
ACD has been around for about 34 years. We’re a state-wide organisation. We support children nought to 18 and their families,. We provide information support, knowledge building for families and for professionals who either work with children and families or hope to in the future when they graduate from their studies, and we provide policy advice to government.
MICHELLE STEVENS:
Thank you. Next, please.
DEB CONNOCK:
Thanks, Michelle. I’m Deb Connock and I’m currently the manager of the NDIS transition for the Department of Human Services here in Geelong. For the last two years I’ve been based in Geelong, supporting the transition of disability services clients across to the NDIS, along with supporting providers, and just about everything that’s been going on in Barwon over the last two years.
MICHELLE STEVENS:
Thank you, and next to Deb?
KATE CARROLL:
Hi, I’m Kate Carroll. I’m an advocate for Assert 4 All, which is part of Barwon Disability Resource Council. Barwon Disability Resource Council has been operating in the Geelong region for the last 40 years and is a not-for-profit community-based organisation, and Assert for All is a division of that and we specialise in promoting the rights, social and economic inclusion for all.
We work with different target groups, not just in terms of disability, so physical, intellectual and those who have a mental illness as well.
MICHELLE STEVENS:
Thank you very much indeed. And of course, we have Marcia Webb.
MARCIA WEBB:
Marcia Webb from the Department of Health, I’m the manager for community organisations for the Barwon south western region. That means I work across mental health, alcohol and other drug services, home and community care services across the Barwon south western region, and aside from that normal day-job I’ve been working on the transition of our mental health and our home and community care services to the NDIS. I’ve been, like Deb, embroiled around these transition issues and working out how things go in the trial site.
MICHELLE STEVENS:
Thank you. One of the biggest questions I suppose from everyone is what do you think are some of the gaps that perhaps from your organisation’s point of view, what sort of gaps do you think happens with NDIS? Where do you think perhaps people are missing out? What sort of gaps do you think is occurring and who do you think perhaps is missing out?
ELIZABETH McGARRY:
Sure, Elizabeth answering this question. With ACD, as I mentioned before, we support children and families, family carers, so it’s a bit of a mixed bag because of the principles that surround early intervention for children, so that’s looking more positive than it has necessarily been for family carers, because of that focus of NDIS being for people with a disability. So there’s been a real challenge for family carers to be able to identify their needs that would support them to continue to care through the lens of the actual NDIS participants. I’ll explain a little bit more about that later, and I’ll talk to you about children now.
The valuable thing for children has been that the principle of early intervention means that the more support that’s provided early, the less long-term support should be needed. There’s been lots of evidence investigation around that, and it generally sits at the idea that for every dollar spent in early intervention, you’ll save seven dollars down the track.
So it’s really quite significant. And also in early intervention, to have access in the traditional service system it was whether you had a disability or a global developmental delay, and that’s quite different to severe and profound as that standard eligibility criteria for NDIS.
So with global developmental delay, that actually means two or more delays in either your motor skills development, speech or language, cognitive social and emotional development and being able to independently undertake daily activities for a typically developing child. So, it’s a bit more broader than just severe and profound whole-of-life.
MICHELLE STEVENS:
I suppose one of the biggest concerns I have as a Deaf-Blind person, particularly representing those people who do not qualify for NDIS, and we know that age is one of the biggest factors, that if you are over 65 you miss out, and I’m well known for some of my views on this subject.
I worry greatly about people who are Deaf-Blind that miss out, particularly those people who are profoundly Deaf and also who have very specialised communication needs. I worry greatly about those people, because the replacement programs as far as I’m aware, living longer, living healthy etcetera, really those people do not have the appropriate communication skills in making sure that that person does not miss out.
Also, I suppose, another question in this gap that we were talking about before is that adaptive technology, whether it is to do with computer technology, screen readers, Braille displays, we know that they are so vastly expensive. Someone on the pension, or someone who may be receiving accommodation support etcetera, how the heck are they going to pay for adaptive technology?
So there again there are people that I feel have greatly missed out, missed the gaps. What about people who are losing one sense, who were born with a disability, Blind let’s say, and there’s a huge area in the Blindness community as people are ageing, people are becoming Deaf-Blind, and that’s another area.
So I just wanted to know from your perspective, what sort of gaps – can we try and improve for these people, and I suppose where can we go from here for people who miss out? Does anyone want to take that question for me?
DEB CONNOCK:
I think everyone’s pointing at me, Michelle. It’s Deb from DHS. Thanks everybody. I guess the timing of us coming to speak to you today, Marcia and myself, we are in caretaker mode still, because we don’t know who our new ministers are at this stage.
But what I would say is, Victoria in all aspects of the negotiations and discussions in terms of the NDIS and the full scheme roll-out, Victoria are at the table, and all of the things I suspect that we’ve heard this morning, that we will continue to hear as the Victorian state government, there’s not much new that we’re hearing that needs to be addressed and discussed and negotiated.
In terms of 65 as the sort of cap if you like, wrong word, but at the moment the eligibility for the NDIS is under 65 years of age. However, if you are under 65 years of age and at present if you age in the system, you can choose to remain a participant of the NDIS.
One of the other things that I think it’s really important for everyone to remind themselves of, and we need to do it all the time, and I think Tina pointed to that also in her conversation, we are still in trial, at launch. We are still in a trialling phase, and we have seen significant uncertainty.
We have seen and identified gaps in the service system right across the board, but to date, to be fair – and this is my personal view, not necessarily that of the Department – the NDIA have worked to address those, and we continue as representatives of government and peak bodies, such as that Elizabeth is representing today, and yourselves, all of those issues that are continually being raised, both with the Victorian government and with the Commonwealth government through the NDIA, are all on the table. So the gaps that you identify are known.
I can’t really say, “It’s going to look like this in 2016 when we get to that point”, because we don’t know that yet. The arrangements are going to have to be signed off by the middle of next year, and I think between now and then a lot of work will be done to look at what things need to be changed.
ROBYN GAILE:
Michelle, it’s Robyn. Could we ask Kate what, from her organisation’s perspective, what gaps she feels there might be for people and their eligibility as well?
KATE CARROLL:
Basically, as mentioned before, mental health seems to be a gap that we’re noticing. Where do those who have mental health fit in terms of the eligibility criteria?
As has mentioned before in the video is that they’ve worked on a recovery model in the past, and it’s more orientated towards those goals than anything else. In terms of the eligibility requirements, you have a permanent impairment and you cannot join in activities and do things without assistance, technology, equipment or home modifications, usually require help from others to join in and do things.
We’ve found some inconsistent accessibility and quality, difficult and inconsistent communication with regards to what information is required, sometimes difficulty getting advocacy assistance due to wait times or in terms of GP referrals, knowing what the GPs need to fill in in terms of the evidence of a disability form. That’s what we’re noticing.
Tier Two supports, gap in the clarity of how the role of referrals under Tier Two of the NDIS will be managed to ensure that everyone is able to access the supports they need.
We had someone calling in regarding a letter they received back from the NDIS director dated February 2014 advising that he did not meet the access requirements as required in Section 24 of the 2013 NDIS Act.
He mentioned a hidden disability, as he had an ABI, hidden in nature of cognitive impairments, told that he’ll be contacted by a Local Area Co-ordinator but has not yet heard from anyone, so keeping him updated about that. And it has ongoing significant impact on him and the entire family.
He’s just interested to know where he fits with the Tier Two supports proposed by the Productivity Commission. That was actually coming from the letter. He actually forwarded the letter on to us.
Our understanding was that Tier Two was supposed to be an alternative for people who are not eligible for total support or do not need or want packages but require support for short-term…
MICHELLE STEVENS:
I suppose, one thing I do want to ask, I want to just find out briefly from one of you and I’m not sure who would like to take this point, if there was one thing you would like to change from NDIS, what would you like to change and where do you think the biggest change should be made to make it successful.
I do realise that’s a sixty-four-million-dollar question for everyone, and I do believe that perhaps you may not be able to express it deeply enough. I’m just wondering what sort of biggest change would you like to see NDIS for it to be the success that we all pray and hope it’s going to be.
ELIZABETH McGARRY:
Elizabeth. I’m happy to have a go at this. I’ll answer your one question with A B C and D. I’ll try and keep it brief.
Good preparation to be able to engage effectively with the planning process, and that’s for people who are eligible and for their supporters and their family carers, and for NDIA not to presume that somebody is walking into a planning session and they’ve got their head around the whole lot, and that, as Tina said, it’s taken support of another and going through a review to get to a really effective successful planning process.
So I think that’s really important for those who are eligible. For those who aren’t, there needs to be a solid Tier Two support system. I think at the minimum it’s naive of NDIA to think that mainstream is just going to pick up, and at worst it’s actually quite dangerous.
It’s important to understand that in Victoria it’s only in the last ten to twelve years, or fifteen years, that we’ve had this whole concept of individualisation of support. So for the 150 years before that, the mainstream didn’t really have to pick up. So you can’t flick a switch and expect that they will come to the party.
MICHELLE STEVENS:
Michelle speaking. One thing is attitude I think is very difficult to change, particularly if the attitude is deep-seated attitude from people that’s been in the industry for quite a while.
Robyn, I know that the audience, I do hope that we do have questions and I’m keeping an eye on the time, so if the panellist is more than happy, I wondered perhaps whether we can get questions from the floor. Please, as before, state your name, if you are representing an organisation.
ROBYN GAILE:
Yes. Michelle, before we take that question though, I just want to give Marcia from the Department of Health an opportunity to answer the question what is happening within the Department of Health to assist people who have a mental health condition who may not be eligible? And then we’ll hand over to the myriad of questions from the floor.
MARCIA WEBB:
Thanks. In terms of mental health, there’s some updates since the video that we saw, when it was put together.
Firstly, that video has been around and been seen, and those issues are certainly being taken on board by both the Department of Health and the Commonwealth government, because there are Commonwealth mental health programs involved in the NDIS as well. It’s not just the state Department.
The previous government approved funding for our community mental health system to continue through to the 30th of June at this point in time. So what that means is that current services keep providing.
So from what was being said on the video about everything stopping on the 31st of December, that’s not actually happening. Things will keep going. So in our NDIA language, we’re staying in kind, so our department money is staying in place. What means is that everybody who is currently receiving service still will be receiving service.
So people who have not been made eligible for the NDIS, or people who have withdrawn or people who are choosing not to participate with the NDIS will still be receiving a service from those organisations.
What will happen, as Deb said, we’re still in caretaker mode. That could’ve happened while we’re in here. The government might’ve been sworn in, but I don’t know, and who our minister will be, so there’s a little bit of time that will go into briefing for a new government and a new minister on what will happen, and they certainly will be briefed by the Department on the issues that have been raised in the video and the issues that are raised by those agencies that we meet with on a regular basis.
What has absolutely been agreed is that people who are currently receiving mental health services will be receiving what we call continuity of support for the life of the launch or the trial. It’s just the process isn’t sorted, which is a bureaucratic thing. It’s not that there won’t be services and funding. That is part of the agreement between the State and Commonwealth, which does not change with any government change. That is absolutely there for the trial.
So I think where the issue is, and what we as a Department and with the Commonwealth have to really think about and are addressing is what happens after the trial and for those people on full scheme roll-out. So that’s what’s not clear, and those decisions haven’t been made. And as Deb said, those decisions around how full scheme will be, we’ll start knowing about that by the middle of the year. That’s when the Commonwealth and the states have to have their agreements, so there’s a lot of work going on at the moment picking up these issues in this mental health space.
There is an absolute acknowledgement that this is probably one of the most difficult spaces for the NDIS, and that the issues just as were said on the video around recovery and permanency are being taken on well and truly by Commonwealth and state, and how you then deal with that in terms of the NDIS legislation.
That legislation will be reviewed next year. There are principles around the NDIS that are under review while we’re in trial, and we are absolutely talking about these issues and those unintended consequences of when we actually saw what happened in the trial and what we’re seeing, that we’re really taking note of that and taking that up with the Commonwealth government, as in the Department of Social Security as well as the National Disability Insurance Agency.
So I’m hoping that assists in some way to say those issues that were quite clearly up there are not being ignored. They’re absolutely being taken on board.
VicServ, which is the peak body for mental health, is actually being funded by the Department to do some research and work with the agencies and consumers to really identify what’s happening and how those plans are working out. And those experiences that our consumers are experiencing up-to-date, where yes, the need for advocacy, the difficulty in getting plans to be right, that difference between functional impairment for people with physical disabilities as opposed to the mental health disabilities and the way our system would have dealt with them.
So it’s not an answer to say it’s fixed but to say we’re absolutely taking on board those issues.
MICHELLE STEVENS:
I think one of the things that I would think about is that particularly in the Deaf-Blind community, mental health issues is a huge concern in the Deaf-Blind community, depression etcetera, so this is some area I think we’re going to have to take up.
The discussion does not end here. I think it’s important that we must realise that the discussions start here. Robyn, can we have the roving mike, and if there are any questions from the floor, please. Thank you.
QUESTION:
Hi. Thank you for your presentations. I’m Wendy Lynch. I’m a rural access worker in the Wimmera region, and that’s way out west for those who probably aren’t aware. We’re currently involved in working on a gap analysis for our region so we know what we’ve got, what we haven’t got, what we need, which I feel is going to be quite great for the NDIS to be launched there.
Has there been any discussion at the table, Deb in particular, about rural remote area issues? I know there’s been a few studies done in Mt Isa and forums in Canberra, but I seem to be getting a lot of calls about information and research about rural remote areas at the minute.
MICHELLE STEVENS:
Would you like to take that question, please?
DEB CONNOCK
Yes, I would, thank you. I’m not sure I’ll be able to answer it fully, but I will have a crack.
I think part of the trial experiences across Australia, and if we think about where the trials are taking place, and Barwon isn’t an island in that respect although it feels like it sometimes.
What we know, and again remember I work for the Victorian government, not for the Commonwealth government or for the NDIA, certainly there are some experiences in the Northern Territory in terms of working with very remote communities, not just from the perspective of the geographical remoteness, but also access to services, access to staff to even support the work of the NDIA to even identify who participants may be.
So in those particular areas there is a lot of work, and a lot of feedback coming through about some of the arrangements that may need to be in place for rural and remote communities.
One of the things I think that will come up for rural and remote communities is the hoary old problem of transport, and transport and its funded line items in the NDIA has been something that’s been circulating quite a lot in the last eighteen months. Everyone is nodding their head and agreeing with me. But it has been reviewed and changed and reviewed and changed, because all of those sorts of issues come into play.
From the perspective of the rural access workers, in trial at the moment the Rural Access Program, which is officially called Building Inclusive Communities, is a community development capacity-building program funded by the Victorian government in trial in Barwon.
That continues as is for the remainder of the trial and is also being built into discussions between all the states and territories, so they are all at the table discussing the Tier Two, which is now ILC.
Tier Two was the secondary supports capacity-building support for people who needed support but not necessarily a funded package of support, which wasn’t included in the trial sites across Australia. They’re using a new term: Information Linkages and Capacity-Building, which is much easier to understand than Tier Two.
Tier Two, for those of us inside the tent knew what it meant, but for most people it didn’t mean a thing. So the Information Linkages and Capacity-Building work, there are currently multi-jurisdictional working groups from all the states and territories working on all of those things which will also deal with rural and remote communities and some of the specific issues they will have.
MICHELLE STEVENS:
I’m sorry to cut you short, because I’m trying to get people the opportunity to ask a question. Do we have another hand for a question, please?
QUESTION:
Hi, I’m Naomi Anderson from Private Capacity. I have two questions, but they’re very closely related. The first is about the connection between the health services and health system and the NDIS.
I understand that people who are participants are told that they need to use the health system first and then use the NDIS, but where the health services have been quite inaccessible to people with disability in the first place, that’s not necessarily possible, and I’m interested in what work is being done to bring those two conversations together, because we’re seeing health professionals who say, “What we have is not going to provide what you need” and the NDIS meanwhile saying, “But you need to go to the health service first”, which results in stalemate and nothing.
Second question is about the appeals process for people who are not eligible.
MARCIA WEBB:
It’s Marcia Webb from the Department of Health, and I guess I’m the one who needs to answer this question.
The interface between health services and the NDIA is getting more complex as the year goes on. We’re working with our health services here in trial as well as the NDIA around understanding those kinds of things that are being said.
The bottom line is that the health service and the systems that anybody would be able to access in the population, whether you have a disability or not, those health services are there. The health system doesn’t deliver the specific disability services that may have been through the ISP.
So to us it’s clear, but it’s not always clear for new planners in the agency around understanding the health service system. So just to say we have it as a high priority issue of discussing.
We have high level committees to actually work through those across the states and territories as well as in trial around that, and that – to say to go to the health system first around a disability issue actually isn’t correct, but we’re working on that.
MICHELLE STEVENS:
Thank you. Does anyone want to add to that before we get the next question from the audience?
ROBYN GAILE:
And before they do – it’s Robyn speaking – we’ll withhold that answer to the appeals question because the session after lunch actually will address that.
MICHELLE STEVENS:
Do we have another question from the audience, please?
QUESTION:
Yes. Rikki Chaplain’s my name. I’m a National Advocacy and Policy Officer with Blind Citizens Australia. I guess my question is around, has there been any thought given to the idea that people who, for example, are over 65 and they’ve had a long-standing disability but weren’t eligible for the NDIS because of their age at the time it was brought in, has there been any thought given to the idea that without supporting these people or supporting people who may just fall slightly outside of the eligibility criteria, that lack of support may actually lead to costs in other areas.
So for example, for someone who might be Deaf-Blind, mental health issues can result from the fact that that isolation that often does exist for people who don’t get those practical and technological supports. That can actually spiral into a whole heap of other issues that result in costs both economically and to the community in terms of their inability to be able to contribute in voluntary capacities for example. So has there been any thought given to the resulting costs of not supporting people?
MICHELLE STEVENS:
Who would like to take that question?
DEB CONNOCK:
Michelle, it’s Deb Connock again and I promise I’ll be quicker this time. I guess one of the things I should say again, we are in trial and for the period of the trial in Barwon, anyone who was in receipt of services through DHS, Disability Services, who had an ISP or was receiving support from a provider that was block-funded, respite, therapy, community access, social and civic participation, and were over 65 and who are therefore ineligible for the NDIA currently, we provided continuity of support.
So they continue to get the services they were getting as at the first of July 2013. I think it is recognised that hand on heart, no-one wants to see anyone fall through the gaps at all, and so I think we all are endeavouring to make sure that whatever is in place, that people do not fall through the gaps. And again, through the conversations, the review of the NDIA, the review of the NDIS legislation, the eligibility criteria and all of the things that have gone on over the last 18 months, and that we’ll see happen over the next 18 months, all of that will inform decisions around what supports will be available for people who may not be eligible for a package but may absolutely be eligible for the Information Linkages and Capacity-Building, and it is the intent of the NDIS that people with a disability are supported adequately, and that the other systems around them and in place will do what the NDIS cannot do. It can’t be all things to all people.
MICHELLE STEVENS:
Wonderful, thank you very much, Deb. Ladies and gentlemen, can you please join me in thanking our guest panellists: Deb, Kate, Marcia and Elizabeth? Can you please give these wonderful guests a warm welcome? Thank you.
Before I do finish, I just want to thank Robyn for asking me to do this session. I wasn’t sure how I was going to go, so I do hope that I sort of ran everything. I do have a wee like present to give our guests and I’m going to have to stand up to do this.
Just while that’s happening, I’m wondering if I can just make one comment about the assistive technology. I think it’s really important, if you believe, or the people you support believe, that a certain item is essential to them, that’s really important for you to go to the NDIA about. It’s up to others to determine that it’s not. If you believe that it is for you, and I would think assistive technology is absolutely, then that’s important for you to put forward. And with assistive technology, too, it’s not just the item, it’s actually about training for those to support you and that’s essential in education.
Thank you very much indeed. As I said before, our discussions start here. So I do have a wee little package.
About Michelle Stevens
Michelle was born blind and lost her hearing due to near fatal illness 22 years ago. Over the years, Michelle has been intensely passionate about Deafblind advocacy and improving the lives of the Deafblind community. In 2010, Michelle graduated from Latrobe University with a Bachelor of Arts degree, and a graduate diploma in Deaf Studies and languages. Michelle is a founding member of Deafblind Victorians, which is a self-advocacy group for Deafblind Victorians. Michelle has been involved with the Deafblind community for over 20 years. Currently, Michelle is the acting president of the Australian Deafblind Council (ADBC). She believes they are living in exciting times to make sure ADBC has a true voice in the disability sector. Michelle believes ADBC will be undergoing huge changes which she feels is necessary for Deafblind advocacy to move ahead.
About Elizabeth McGarry
Elizabeth heads up the Association for Children with a Disability, a Victorian based, not-for-profit family-focussed organisation which exists to assist children with a disability and their families through the provision of information, support and advocacy. Elizabeth is resolute in her belief that real life experiences should inform the development and implementation of public policy. Like many involved with ACD, Elizabeth has personal experience of disability within her family. She is a passionate advocate for the right of every person to be afforded the opportunity to realise their full potential.
About Leonie Dillon
Leonie’s educational and professional background encompasses Community Development, Early Years Children’s Services and Family Support. This work has always focused on bringing about systemic change to reflect families and individuals changing needs and choices. Leonie’s present work is as a non-legal advocate at Barwon Disability Resource Council, which commits to promoting rights, social and economic inclusion for all.
About Deb Connock
Deb Connock is the Manager of the NDIS Transition Team with the Department of Human Services. She is based in Geelong. She has been with the Department of Human Services for the past two years.
- Author:
- Barwon Disability Advocacy Network (BDAN)
- Source:
- The NDIS and Advocacy conference
- Date published:
- Thu 4th Dec, 2014