Mix Zone segment: Disability sector in South Australia

Jules Schiller: We’ve created something called the Mix Zone where we take a topic and issue and we try and get as many voices on it as possible look at it from all angles today we’re going to take a look at the disability sector. If you’re a carer, if you’re affected by a disability yourself, if you have any thoughts on the disability sector in South Australia I’d love to hear from you. The rollout of the $22 billion NDIS is one of the biggest social reforms we’ve seen in Australia, it was a much-needed reform in one OECD study many years ago we were ranked last. The NDIS is a huge structural change, so how is it being rolled out, how is it being received, but more importantly what issues in general are facing people with disabilities, their carers and service providers in 2018? I would love to hear your thoughts but I’m about to introduce three people to you who are very experienced in this sector. Firstly Robbi Williams tell us what Purple Orange does?

Robbi Williams: We’re a not-for-profit community agency, although we prefer to call ourselves a social profit agency because we seek outcomes essentially we’re involved in research and advocacy, not the sort of advocacy that people would get individually because there are really good agencies out there who do that; we do more what you might call systemic advocacy where we spend a fair bit of our time bothering politicians and bureaucrats about how we think things can be.

Jules Schiller: Okay, second we have Diana Bleby you’ve been a service provider in the disability sector for many years Diana.

Diana Bleby: I have not that old though [laughter].

Jules Schiller: And also lastly Cassie Day, your son Matthew has a disability

Cassie Day: Yeah along with having Cystic Fibrosis he has an acquired brain injury as well and is on the spectrum.

Jules Schiller: And so what made you found The Carers Place?

Cassie Day: Yeah, look through my own experiences essentially it’s been 16 years since I’ve been a carer I found that I wasn’t linked in with services that I really needed at the time through my experience I didn’t look after myself that well and I got myself into what is fairly common amongst carers themselves, into a situation where I really needed attention on my own health and wellbeing I really wanted to help and inspire carers and families to look after themselves because when we look after ourselves we can give the best of us to those that really need it.

Jules Schiller: I think many of us are affected by disability, my brother Nicholas he died when I was 18 he was mentally handicapped, I looked at my mother fighting for rights for the disabled people growing up during the 70s. I remember this was a period where people with intellectually disabilities were being chained up we have come a long way with how we look and treat disabled people, but there’s still a ways to go. I’ll ask you Diana as a provider how has the NDIS affected you? Has it been a positive change?

Diana Bleby: Look the NDIS as you said is a massive social reform and a great initiative. It’s affected my ability to provide employment for people and hopefully provide responsible services through that, but it’s also come with a few teething problems and headaches along the way. We are providing services to people with disabilities, in particular often invisible disabilities being around language and communication, which are not necessarily what people see in society as being a disability. I also need to make it quite clear, I am fortunate enough not to be a person with a disability and without having someone here to talk exactly about what that experience is like for them we can’t do that, although it’s lovely to have Cassie’s experience as a carer and a parent. I’m watching it very closely at the moment I think we need to have a look at it quite carefully, how it dovetails in with State Government services because the NDIS is supposed to rollout to about 32,000 South Australians and there are over 320,000 South Australians with some level of disability who need to be treated as people, be able to access services that are the most appropriate for them. The NDIS was never invented to be for all people.

Jules Schiller: How are you finding Cassie? This is a huge structural change, isn’t it? I mean it came out of the 2020 Summit. I think it’s the only thing that got up out of that summit, the NDIS. $22 billion more than doubled funding. Are you finding that in dealing with carers and your own son that the money is coming through, are there any gaps, are there any problems?

Cassie Day: I think from a consumer perspective it is an extremely complex system where parents and carers and people with disabilities themselves are so overwhelmed that they’re actually not accessing the services at all and I’m finding that people are walking away from them, that’s not just from a bird’s eye view that’s from my own perspective as well. It is extremely difficult to understand the system, to know where your boundaries are and to then implement therapies on your own when it’s on top of your already overwhelming load. So from carers I’m finding that they are struggling with it. I think once it rolls out in a few years’ time it’s going to be a lot easier for people to access but right now in the majority I’m finding that people are finding it difficult. Look there’s some brilliant things about it. The scope of which the therapies we can access are so much broader perhaps than they were beforehand but yeah there are significant teething issues from a provider perspective it can be as confusing to know where to go and how to start servicing those clients.

Jules Schiller: Robbi Williams I go back to you as someone who works in the disability sector or is an advocate are you finding that the NDIS is sort of doing enough to kind of create the dignity that disability needs, getting people into the workplace, getting them to be independent?

Robbi Williams: I think it wants to do that Jules. I think if we look at the reasons why the scheme has emerged first of all we can trace it back to the United Nations Convention or the Rights of People with Disabilities, which is very clear about people who live with a disability having the same set of rights and opportunities as any other citizen that’s what underpinned Australia’s National Disability Strategy along the way to crafting that strategy the Australian Government heard from thousands of people living with a disability and their families around Australia whose story is one of being shut out, sort of being excluded from opportunities in life and they produced a compelling report called ‘Shut Out’. The NDIS emerged from that. So the NDIS is designed in effect to deliver on two main values. One is that it gives people genuine control and choice over their life journey and the supports they need to make that journey possible and secondly to take up ordinary valued roles in community life and in the economy. So I’ve yet to encounter anyone at the NDIA who doesn’t believe in those values and doesn’t want to see them play out but there is a bigger issue, which is something called ‘the bilateral agreements’, which is the agreements that are set between the various State and Territory Governments to make this thing work the problem is that the timeframe for shipping a whole bunch of people from State and Territory Government responsibilities to Commonwealth, NDIS responsibilities the imperatives for timeframe, money and people are so great that it’s bending the NDIS out of shape.

Jules Schiller: Cheryl to talk about her experience with the NDIS; Cheryl is vision impaired. Thanks for joining us Cheryl. What’s your experience been?

Caller Cheryl: Well my experience is that it’s been quite stressful for me personally. I mean I have a vision impairment since I was a child I’ve had my planning meeting we sat there for two plus hours discussing what I’d need or what I would like to be able to have to give me more independence and my parents don’t have to be my full-time around the clock ‘if I need a bit of help can you pop over’ people, but a lot of what we discussed is not even in there, some of what we discussed is wrongly written down I’m just a bit sceptical about whether I’m even going to end up receiving what I originally asked for and whether I’m actually going to have to do a whole plan review.

Jules Schiller: Thank you Cheryl, let’s go to Julie what’s your experience been?

Caller Julie: I’m in the process of waiting to even hear if I’m eligible to access the scheme. I applied back on World Sight Day and it’s been over three months and I haven’t heard anything and I don’t roll out until the 1st of April I have a vision impairment and a physical disability.

Jules Schiller: Cassie, are you finding that carers are having experiences it’s taking too long or they’re confused by some of the bureaucracy?

Cassie Day: Yeah, certainly all of the above what I’m finding is the assessors don’t really truly understand the complexities of the person with the disability, they don’t understand, they can’t see how it affects the entire family, how it affects their day to day life, it’s reduced down to words which really isn’t real life people get extremely frustrated and three months is very short period of time. There are a lot of people who have been waiting a lot longer than that, whether it’s for their first assessment for their plan or for reviews it takes an extremely long time and in the meantime those people don’t have access to critical services or it’s coming out of their own pocket and they’re having to forsake something else in place of that.

Jules Schiller: we’re talking about the disability sector in South Australia, Diana, you’re a provider in the NDIS, have you found it consistent enough, what teething problems have you found with it?

Diana Bleby: We’ve seen a lot of inconsistency unfortunately, most of my practice is centred in areas of need, northern Adelaide you’ve got people who are accessing services potentially for the first time ever because they haven’t been able to access them in the past, that’s the positive side, but they’ll come in with plans which have been done with NDIS planners for example and you would have two identical children with $6,000 difference in funding, depending on who their planner was, was it done over the phone, was it done face to face, I don’t like to criticise the whole time but I would like to suggest that in order to improve something like that planners need better training. We need to actually respect the complexity of the family and their needs and treat them like people not just a person who’s labelled with a disability. Planner training I think is really important and time to get it done properly, people going to planning meetings having no idea what services they would like to access because it’s really overwhelming.

Jules Schiller: It’s a hard thing isn’t it, whenever we talk about funding a disability what price do you put on someone’s mobility, what price do you put on their ability to speak or hear or see, it’s a hard philosophical kind of hurdle.

Robbi Williams: It is one of the mistakes we can make is we immediately go to try and measure people’s impairments, which is not that helpful because what we really want to measure is what are the consequences in terms of someone’s life chances if we have an inclusive society then we don’t need to measure a 25 year old man’s degree of intellectual impairment if that inclusive society still gives them a fair go at mainstream waged employment, so what we should be measuring is the gap in people’s life chances as a result of what’s being described as their disability rather than trying to measure the nature of disability itself. One of the challenges for us has been revealed by a piece of research we did a couple of years ago where we spoke to hundreds of people living with a disability in their families around Australia about what they wanted to make planning a good experience, what they wanted was someone they trusted, ideally someone they know, they wanted it done using a methodology that they’re familiar with and they can work with, and on a timeframe that works for them. The NDIA as it’s rolling out, the NDIS it’s very difficult to honour those things because typically you’re meeting a planner who you’ve never met before, who’s not going to have insight into your situation, they’re working to a brutal timeframe, their methodology’s typically a standard methodology involving certain assessment tools and a conversation which then gets squeezed into some kind of plan. Our view is, is that the way the NDIS could be strengthened is if there was the opportunity for grassroots community agencies to be involved who already know people living with disability in their families, give the person and their family the choice about who they do their planning with, give that planning a shape including building a genuine vision for the future, not just thinking about being a recipient of formal support by taking life chances on, and then take that to the NDIS, not have it happen within the NDIS pathway.

Jules Schiller: Getting away from policy and bureaucracy, just getting on to dignity that’s probably one of the most important words with people with disability. The NDIS is an insurance scheme, it’s not welfare, it was designed by the Productivity Commission to get people with disabilities into the workforce, get them to become independent and feel valued, it was only 20 or 30 years ago where people with disabilities were being chained up Australia wasn’t a great promoter of people’s rights with disabilities. How do you think we are in 2018, what’s the dignity level like for people with disabilities, how they’re perceived in the wider community.

Cassie Day: I can’t speak for everybody it’s certainly changed but we’ve got a significantly long way to go.

Diana Bleby: it’s increased and part of that has been through the advent of the NDIS but there’s still a lot for the community to understand and learn, 18.5% of the community have a disability if you increase that to mental health issues across the board coming and going and then some of the introduced disabilities with ageing, then there’s not anyone in the population who is not impacted in some way by someone who has a disability we need advocates people like Kelly Vincent who is doing a marvellous job to help raise that awareness, but people need to understand is that disability is not necessarily a visible or a physical thing you’re talking about cost to society, 60% of youth in incarceration will have some kind of language impairment they look like everybody else but they tend to thump people rather than talk because they can’t. Then their recidivism rate is really high as well.

Robbi Williams: Dignity I think comes from our membership of our communities, if we’re going to plug that dignity gap the first thing we need to do is to make sure that our Government mainstream services are genuinely welcoming and inclusive that means inclusive schools so that kids living with disability can choose to go to their local school and get a good education, it means mainstream waged employment, it means accessible public transportation, accessible buildings, public spaces those are things that the Governments, Local, State, Territory and Commonwealth Government can lead on because that’s what they’re meant to be doing as part of the United Nations Convention and the National Disability Strategy, so that’s the formal stuff, but then there’s the informal stuff which is what your listeners can do and other people in South Australia as neighbours, as friends, as club members, is how we open up our own lives to our neighbours who happen to live with disability. It’s asking the question of ourselves, what can we do in the way we run our own daily lives that mean that the things that we do are more inclusive of people living with disability and their families.

Jules Schiller: I mean this is especially important I think because we are reaching an age where people with disabilities are coming into schools now and this is a constant battle to stop kids teasing people with disabilities I’ve scolded you know sportspeople who’ve used the word ‘retarded’ on a tennis court or you know people put it in songs, ‘let’s get retarded’ I don’t think it’s really.

Diana Bleby: I think that attitude’s improving.

Jules Schiller: Yes and that’s why I wanted to ask you because this is a time when we’re trying to integrate people with disabilities into you know normal communities like schools and public transport so it is improving people’s attitude, isn’t it?

Cassie Day: Yeah and I think from my perspective I’ve got two teenage boys in private school, they were in private school and I see a significant difference in the flexibility that leadership can have in a private school as opposed to a public school. So certainly from tolerance and understanding in my children’s school it is absolutely brilliant, zero tolerance and they have I guess a lot more room to move in terms of discipline in that regard but also they teach very strong values there, whereas I think in the wider community yes it is improving significantly but I do think again we’ve got a long way to go, particularly on those issues in and around invisible disability and my son has that. You can’t see cystic fibrosis, you can’t see his brain injury yet there have been so many instances where he’s just been up against it because of lack of understanding and tolerance.

Jules Schiller: Last question to the three of you before we go: If you could sit down in front of the relevant Minister and make one suggestion about how we can improve rights for people with disabilities or the rollout of the NDIS or anything, if you could say one thing what would it be? Let’s start with you Robbi Williams.

Robbi Williams: All the things that we’ve said so far I wouldn’t want people to confuse them for thinking that what we need to be is charitable because the last thing that people with a disability and their families need is charity it’s not even about rights because rights are a head thing and this is about the heart. So I think it’s about humanity how do we create communities that are genuinely inclusive and have good wellbeing this is about the humanity of all of us and how we get along together. I think if I was going to ask the Minister one thing, particularly in South Australia, I’d be asking for the State Government to make an investment in the leadership by people living with a disability, to invest in proper capacity building, proper opportunities for people from within the disability community to take up their rightful place as leaders because we have not seen much investment in that area for a long time.

Jules Schiller: Okay, Diana?

Diana Bleby: Okay, if I had that opportunity I would be asking the relevant Ministers to listen and to listen to people with disabilities and hear what they are saying help shape policy on the basis of that and not just a whole lot of removed people, including myself at some stage because I don’t have that experience to say what is it that’s going to work for you and let’s do a grounds up approach on that to shape the kind of thing that Robbi’s talking about.

Jules Schiller: Cassie, what would you say?

Cassie Day: Look I’d love to see a more inclusive approach look at the whole family unit, look at working with people in their homes perhaps, whether it’s assessing people within their homes or within their communities and I’d also like to see an explanation or a softening from the planner’s perspective when they’re working with the people with a disability or with the carers trying to get them to relax and be at ease during these times and explain to them why it’s important to explain exactly what’s going on for the person because what happens is quite often we’re seeing a downplay of the severity of what’s happening for the people with the disability and therefore they’re missing out on significant funding because people don’t want to whinge, so.

Jules Schiller: Cassie Day, Diana Bleby and Robbi Williams thank you so much for coming in and congratulations on the fine work that you’re doing so great to have you come in and share your thoughts.