This session was part of the NDIS and Advocacy conference held in Geelong on 4 December 2014. Tina Gulino spoke with Robyn Gaile about her personal experience with the NDIS. This session explored whether the NDIS is working from the perspective of participants, and what it means to live with a disability more generally.
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Transcript
ROBYN GAILE:
It is my pleasure now to introduce Tina Gulino, who is our keynote speaker today. We’re going to do things slightly differently. We’re going to do it a little bit interview-style. I’ll ask Tina a few questions, and then we’re going to open the floor to you to ask Tina a couple of questions. Then we’re going to have a 9 minute video which explains the ndis and some issues from the point of view of people who have mental health conditions, and Nathan Grixti will introduce that. Then we’ll move straight from that into our session 2.
Let me just introduce to you Tina Gulino. There is a biography in the program, but i thought i’d mention a couple of highlights. Tina is the chair of the Barwon Disability Resource Council, and she is also a proud member of the LEAD Barwon project, which is run by the City of Geelong, a program that provides advocacy training and community development support to participants of the NDIS here in the Barwon region. She’s also been involved in some of the leadership projects run by Women with Disabilities Victoria, as a reference group member, and the programming around enabling women in their gender empowerment program. So let’s hear from Tina. Tina, you are a person with a disability, and you’re a participant of the NDIS here in the barwon region, and i understand you’re on your second plan already, so you’re a bit of an old hand at this already.
TINA GULINO:
Yeah, just a little bit. Talking about some of the things that you mentioned that I’ve been doing or am doing, they’ve now been possible because I’m now getting the appropriate level of support around personal care. I suppose we could step a little bit back to my first plan – I’m now on my second – but it’s interesting.
I think we need to go a step back to my first plan, because really, before that I was living in crisis. I was only being able to have assistance to get up, only being toileted at bedtime, and I’d be lucky if I got breakfast of a morning.
But now this is how my day looks. We have a two-and-a-half-hour shift of a morning, and then I have what I call a twinkle and tea shift, and a bed shift. But also, like todays’ conference, I could come confidently to the conference with my support worker because I need personal care. We were able to organise a change bed. We were able to organise a hoist. But those things before NDIS weren’t possible for me, because I’d been living on the DSR waiting list for 14 years, waiting for support.
ROBYN GAILE:
And just for those who don’t know the DSR, what’s that?
TINA GULINO:
The Disability Support Register. I certainly didn’t have the support needs that I have now when I first started, but nobody should ever go through what I went through ever again, when they have to basically beg, plead, to be put on the toilet.
ROBYN GAILE:
That just sounds horrific.
TINA GULINO:
I didn’t realise how horrific it is until I’m now into my second plan, where I’m now talking about goals and what I want to do in the future.
ROBYN GAILE:
I just want to unpack a little bit about that not so fabulous time. When your basic support needs aren’t getting met, what are your expectations of what life is going to be?
TINA GULINO:
You actually start not to have any. I realise now, because I’m into my second plan, I was actually sleeping my life away, because I was struggling to do the most fundamental things, like eat, prepare food.
I might make a meal one day, but if I didn’t have the energy to make it the second day, most of it ended up on the floor, because it’s quite an effort to do it now. I just went, “Oh well.” That’s what that meant.
ROBYN GAILE:
So when this thing called the NDIS came to town and you were in the region, which therefore made you eligible, and you’d been on the disability support register list for such a long time, what were your concerns about proceeding, contacting the NDIA, the national disability insurance agency and actually getting a plan?
TINA GULINO:
Well, what happened — when you’re somebody like me who was just waiting for support, we were probably the first group to go through the NDIS because we were the most immediate group in need. So we were actually contacted by NDIS.
My story’s a bit interesting in that I was helping do a dry run before the plans were activated. So just to have an idea before they opened the office doors, we did some scenarios of what they might expect, and I didn’t expect to be told that day that they wanted to start my plan fairly straight away, given the circumstances I was living in. And I’ve got to say, I was a grown woman in tears, I think just out of sheer relief.
ROBYN GAILE:
And what did you get when your plan was developed? What was on the plan?
TINA GULINO:
I suppose what I need to talk about – the plans are a social model, not a medical model, and I had difficulty in talking about goals initially because of the situation that I was in.
I couldn’t have completed my first plan without a supportive advocate, just for another person to go through those goals to actually turn them into goals of being able to actually get out of bed, get the personal care I needed, and then move into life again by engaging in things with women with disabilities. That’s enabled me to do those things.
ROBYN GAILE:
That makes me think – a lot of people have just gone through the VCE exams, and your comment makes me think of that. I remember when i was 17 and doing my VCE, and i thought, “everything hinges on this exam. My whole life depends on what my results are going to be.” and that made me think, did you think that about the plan? “oh god, i don’t even know what to ask for? Now someone’s supporting me, but am i asking for the right things?”
TINA GULINO:
Yeah. I think because I was living in a situation where I wasn’t getting my fundamental human rights met, I couldn’t think in terms of goals and aspirations at that time.
ROBYN GAILE:
So what was the mental process that you went through to actually ask for what you want?
TINA GULINO:
Well, I’ve got to give credit to my advocate, but also to my planner. Somehow he managed to realise my goals were actually to stay living in my own home. He was able to translate my level of personal care to that as my main goal, as one of my key goals. And my other key goal is to continue to shape and drive what the disability sector looks like.
From all the conversations that we had in developing my plan, he was able to, with the assistance of my advocate, help me shape what I now actually see as the foundations of my plan. They’re now building blocks for the rest of my plans.
ROBYN GAILE:
How does plan 1 and plan 2 differ?
TINA GULINO:
It’s really interesting. When I go to do Plan 2, I didn’t take an advocate this time because I was in a better headspace. I could actually think about goals and aspirations, because those key fundamental human rights are being addressed in an appropriate manner. So I’m now looking at some further study.
ROBYN GAILE:
What are you looking at doing?
TINA GULINO:
A Certificate IV in Training and Assessment. And I’m even thinking about work again.
ROBYN GAILE:
May I ask what is in your current plan? What support is being provided?
TINA GULINO:
We’ve talked about the personal care stuff, but the one that I think is the most interesting, and this is the thing people need to understand, it’s no good me giving you detailed bits about my plan, because we’re no longer living in that box system that we had previously where you had to fit into a system, or fit into a box that was set out by the Disability Support fund and things like that.
One of my little quirky line items I call it – you know, I’m just a greedy person, Robyn, I have a physical disability as you can see, most people can see, but I also have visual issues. I don’t have 20/20 vision in either eye, and I also have depth perception issues, so one of my little quirky things is I have – I love the language too in the plan, it’s called social and civic participation, instead of community access – and one of my little line items is around my vision stuff, going into different environments. I have some hours in my plan to support me to do that. So that’s something that’s particular about me. And it’s really good to be talking about those things that make it possible.
ROBYN GAILE:
What advice do you have for people who are not yet participants of the NDIS, about what they need to do, one to get ready for making a plan and then two, actually taking up the support?
TINA GULINO:
Look, understanding that it is about your disability supports, and also it’s really important for the first plan, I reckon, to actually take a paid advocate with you, because it’s having that second person in the room with you to help you digest the information that’s being presented to you.
ROBYN GAILE:
That’s an interesting point: a paid advocate, or a funded advocate.
TINA GULINO:
Yeah, a funded advocate.
ROBYN GAILE:
As opposed to a family member? What would your reasoning be?
TINA GULINO:
My reasoning for that is, whether it’s a family member or a friend, we’re emotionally involved. It’s my life we’re talking about.
Where a funded advocate is a step back, so they can help you put the information you’re given in a good way so that you understand how it sits, and if you’ve got questions or you think something’s not okay, that’s the time to use your advocate. But also, when your plan’s set, it’s not like it’s set in concrete any more.
In my first plan, I had to upgrade a lot of my equipment, so we didn’t worry about putting in maintenance in my initial plan, but as we went along, as we were waiting for the new equipment, we needed maintenance line items, so there were some interesting things that had to happen there, because NDIS is in a, well I still say launch, I know it’s not the political word used, but I figure it aint going away.
They can use trial all they like, but as far as I’m concerned, that red T-shirt would go back on if they ever decided that it was going to change. And that was about having conversations, because in this launch site, you have a planner that develops your plan, and then you’re basically handed over to a local area co-ordinator that basically is your conduit between you and the planner. So we put in for all my new equipment, that had been approved, but I had to keep the other stuff going while I was waiting for the new stuff. So we hadn’t put in line items for maintenance. So that was a matter of going back to the NDIS – because they weren’t sure how it was going to work, because it’s still an agreement between SWEP and NDIS at present.
And so they didn’t quite know how the emergency response stuff would work, and they said, “Well, you could ring your LAC and your planner.” I said, “Well, that’s really nice. That would work really well between nine and five, but what happens when my hoist or my chair decides to play up over the long weekend, because guaranteed it’s going to be a Friday night or Easter Saturday when that’s going to happen.” So it’s nice to know that we’ve shifted some thinking around that, and now when it’s an emergency requirement, you just ring SWEP like you used to and they put it down as an emergency response.
ROBYN GAILE:
and SWEP is the provider who actually delivers those supports that you need.
TINA GULINO:
They’re like the wheelchairs, the shower chairs, catheters, all sorts of things. But I suppose the other bonus is it’s the first time in my life and that of my family we haven’t had to allow our dignity to disappear, because my wheelchair’s been fully funded at $22,000.
ROBYN GAILE:
Excellent. We’ve got a couple of minutes for questions from the floor. Carol from barwon disability resource centre is here with a roving microphone, so if you do have a question, please raise your hand and wait for carol to bring the microphone to you. Can you say your name, and if you’re with an organisation who you represent.
QUESTION:
Hi Tina, Deb from DHS. I love hearing your stories. I think it would be interesting for everyone to know in terms of SWEP and the equipment that you often talk about the fact that you don’t have to pay a gap any more, and I think that’s a really fantastic outcome through the NDIS. Have you got any comments you could make about that?
TINA GULINO:
Look, the other thing that I’ve discovered, because I’m now getting a shower commode chair, lucky me, it’s worth eight grand. But that’s been an interesting exercise in itself, because the OT that I have always used did the original assessment and we ticked the box that said 800 for the commode chair, and I remember saying to my original planner, because it was in my original plan, I said, “I don’t think $800 is going to cut it.”
And my query to NDIS is around their benchmarks for their equipment, but also, having gone through the process, because we have to do an independent assessment. That’s okay, the NDIA got the quote and went, “Oh my God, is it gold-plated?” which is fair enough. It’s not just about the money but also making sure it’s the right piece of equipment.
But I wonder whether that’s the smartest use of the human part of the resource. The OT I’ve got, I classify her as the matriarch of occupational therapy. What she doesn’t know is not worth knowing, but I wonder, with her knowledge base, whether that’s a smart way to use not just the money resource but the human resource.
She’s not going to recommend a piece of equipment that isn’t right for me. And the thing I’ve learned working with her over the years, you usually get the equipment right the first time round. So that’s my only comment in the process. It wasn’t a terrible or bad process for me or the independent OT, but we were having a bit of a giggle when we did the second independent thing. She said, “If they ask me to do a third one, I have no idea what we’re going to do.” Because one of the chairs that she got me to try, if we’d taken me out of the sling I would’ve just slid straight onto the floor.
So that’s my only comment, in all of the things that I’m learning about the process is that the benchmarks that are set, because there’s groups like me that are never going to fit into equipment that rolls off the factory floor, and I know I’m not the only one.
ROBYN GAILE:
One more question…
QUESTION;
Mark Thompson from Grampians. Did you include recreation and travel in your package at all?
TINA GULINO:
Well, what happens with your package, with me, NDIS do what they call a functional assessment, and again, thinking about it in terms of a social model, it looks at mobility in a really broad sense. Recreation, again going back to the language of civic and social participation, that’s actually covered in that broad heading in the social model. Because I need personal care whether I’m doing work things or whether I’m doing social things. So those things are looked at in a functional assessment.
For somebody like me, the basis is a functional assessment where they look at it in a broader context of what sort of transport I can and can’t use, and those are the things I guess that they use. And that was developed with my physio and OT in those broader types of headings, round my daily living requirements to my ability – because it’s not just about getting you out of bed and taking you to the toilet. It’s actually making sure that you can actually participate within your community, whatever that means for you.
Again, my plan is about me, and your plan, when that time comes, should be about you.
ROBYN GAILE:
Thanks, Tina. That’s a great place to end your address. Thank you very much. Will you join with me in thanking Tina? Nathan is going to introduce a short video to round off this session.
NATHAN GRIXTIE:
Thank you, Robyn. My name’s Nathan. Just quickly before I begin I would like to acknowledge the traditional custodians of the land we meet on today, and acknowledge elders past and present, and thank you too Tina as well for your talk.
One of the things with the implementation of the NDIS, particularly in the Barwon region, is we know that in relation to mental health we face quite a unique set of issues. I’ve been working with VIMIAC as an advocate working in the Barwon region and have been working extensively with consumers down here around some of the issues people have been facing.
More recently I’ve also been working very closely with Indigo Daya who is the General Manager of Consumer and Carer Advocacy through my fellowship as well. Part of the work we’ve been doing is working very closely with people with a lived experience of diagnosis of mental illness or facing emotional distress and trying to raise their voice in what’s been happening down here.
A lot of this work has actually culminated in a forum which was hosted several weeks ago in this venue, and as a result we’ve put together a video of what peoples’ experiences have been. The video covers two main issues that we’ve been facing within mental health. One is around the notion of permanent impairment in relation to the eligibility criteria, and the other is another unique issue that we’re facing in Victoria where pretty much all of our community mental health supports, the bilateral agreement between the state and federal governments has meant that all of community mental health support funding has gone into the NDIS, which we know that that means there’s going to be a lot of people who may be ineligible who now have nowhere to go for support.
Just a quick note on language, and I’m glad Tina mentioned language before as well. It’s quite a sensitive issue for a lot of people that we are talking about notions of permanent impairment and disability in relation to mental health. It’s more looking at the impact that these kinds of terms have on that space. We’ve had a few comments already that it can be a bit tricky when we’re speaking about disability and permanent impairment that we’re not actually marginalising or ostracising any other members of the community, so please keep that in mind while we are showing this video.
I will be presenting later on today on the issues that mental health is facing as we integrate it into the NDIS. Please check out the video
We can see some of the information in that particular video is already pass its use by date. We have had our election; we have a new Government in place. We are also aware some of the funding as part of the bilateral agreement has also been extended until June next year.
Presently there may be people who may not eligible for NDIS, who have not opted to participate with the NDIS are still receiving support. We are still uncertain as to what the future looks like here. We just thought it was a great opportunity to present the real stories of real people within the region and how the implementation of this new system has affected people.
Thank you.
About Robyn Gaile
Robyn Gaile is the Coordinator of the Disability Advocacy Resource Unit, which provides web-based information and resources, forums and training for Victorian-based disability advocacy organisations. Prior to her current employment, Robyn was the Executive Officer of Blind Citizens Australia, the national peak consumer organisation of and for people who are blind or vision impaired. She has 19 years experience working in education, training and employment services for people with a disability. She is a member of the Victorian Disability Advisory Council and sits on the social inclusion and built environment working group of the City of Melbourne Disability Advisory Committee.
About Tina Gulino
From the day Tina was born, her family began fighting for her human rights. Tina found her own voice and now speaks for herself. She is one eight children and an avid supporter of the Geelong Cats. She’s currently chair of the Barwon Disability Resource Council. She was a LEAD Barwon participant, run by the Committee of Geelong. She’s currently involved in some of the projects run by WDV as a reference group member: Enabling Women and Gender and Disability Workforce Development Program.
About Nathan Grixtie
Nathan Grixti currently works as an advocate with the peak consumer organization in Victoria, the Victorian Mental Illness Awareness Council (VMIAC). Nathan identifies as a consumer, as a voice hearer and as a psych survivor, holding strong conviction in the power of consumer communities in affecting positive change, not just in the mental health system, but in the way we understand and continue to reframe the way we think about mental health and illness. Nathan has a background in both Peer Support Work and PHaMs roles, and has been speaking publically about his lived experience of receiving a diagnosis of mental illness for a number of years. He has worked extensively with other consumers in the Barwon region during the implementation and trial of the NDIS, an experience which has directly influenced his decision to move into a consumer-focused advocacy role.
- Author:
- Barwon Disability Advocacy Network (BDAN)
- Source:
- The NDIS and Advocacy conference
- Date published:
- Thu 4th Dec, 2014