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Vision for the future
Insights from people with lived experience, including the Minister for Families, Communities and Disability Services
Barriers in the traditional workplace to people who are blind or vision impaired have made full inclusion challenging. While their skills and insights can be often overlooked, the pandemic has shown that it’s possible for society to work in dramatically different ways. We may have a unique time in history where we can unlock the potential of this group.
There is a poor understanding by business and government of the value that employees with vision impairment can add to the workplace, which also brings with it, widespread bias and discrimination. Alarmingly as a result, people with vision impairments suffer some of the highest unemployment rates in Australia and one in four live in poverty.
However, the shift to remote and online working has shown just how well people with vision impairment contribute to a new COVID world.
2020 has seen a complete restructure of how society conducts its business. For many organisations, this has meant learning to adapt to rapid change. It has also seen some unexpectedly positive outcomes. Particularly for working individuals with vision impairment.
Whilst the Australian education system has vastly improved how it integrates and supports those with vision impairment, what happens when schooling ends and a new journey in the workforce begins? How do workplaces support and develop people with vision impairment that moves beyond simply satisfying their diversity charter?
This year, having to restructure traditional “face to face” work environments has been both unsettling and disruptive. But for some, it’s proof that flexible or ‘alternative’ working is a marker of both efficiency and productivity.
We have gathered together a panel of individuals with lived experience to discuss how working with a vision impairment has equipped them with the tools to adapt, drive productivity and prove that working alternatively is both impactful and here to stay.
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PETER McCLUSKEY:
Good morning, everyone. I would like to thank you all for joining this Sydney Ideas event. I want to begin with and acknowledgement of country, and acknowledge the traditional custodianship and the law of the country on which the University of Sydney campuses stand. We pay our respects to those who have cared and continue to care for country.
I would like to introduce the panel. We have got three speakers. We have got Matt O'Kane, Simran Goyal, and Minister Gareth Ward, the Minister for Families, Communities and Disability Services.
Minister, unlike the US, we have done so well that we don't need any screens for our session and as the moderator, I don't have a mute button. I hope we don't need it.
I would like to begin by setting the context and introducing what we want to talk about today. Vision impairment and blindness is a major, urgent problem. Globally there are over 2 billion people who have a vision impairment or are blind, and at least 1 billion people have a vision impairment that could have been prevented.
Here in Australia, we have about 575,000 Australians who are visually impaired, and 66,000 of our population are blind. Locally and globally, eye health are a pressing issue. Here in Australia, one visit in 10 to a GP is for this problem.
Eye health and impairment is ahead of coronary heart disease, diabetes and stroke. The prevalence of vision impairment is three times higher in Indigenous Australians than it is in non-Indigenous Australians.
The rapidly ageing population and the rapidly growing population in Australia will continue to see an increase in the number of Australians with vision impairment and blindness over the coming decades.
So there is an urgent need to develop new therapies, new models of care, to address this problem of vision impairment.
Lastly, advances and treatment mean that now genetically determined eye disease is the most common cause of blindness in working people and it now surpasses diabetic eye disease, because we’ve had greatly improved treatments.
I am the Chair of Ophthalmology at the University of Sydney. I am also the director of Save Sight Institute. We have worked very collaboratively with the Sydney Eye Hospital and with patients to combine basic vision science with translational research.
This has led to us being globally recognised as a centre of excellence in the prevention of blindness, and our mission is to improve the lives of people with vision impairment through our transformative research, benchmarked international standard clinical care, and innovative teaching.
We have research groups in our institute that cover the spectrum of vision-threatening eye diseases from the cornea to the retina to medically determined eye the reason we are here today with that background and context as we want to talk diseases, neurological eye disease and ocular cancer.
The reason we are here today is we want to talk about vision impairment, especially in the workplace. Visually impaired persons are often dismissed and overlooked and considered not suitable or not able to contribute to the workplace and the community.
This has led to there being enormous barriers for vision impaired people in terms of being included in the community, Government and business.
Now with the COVID epidemic, we seem to have an unexpected opportunity to show how people who are vision impaired can contribute to society because there is basically almost a unique opportunity where we can unlock the potential of vision impaired people to contribute to the workforce, to our community, because COVID has led to a complete restructuring of how our community conducts business.
We have had to learn to adapt to rapid change. And there have been some unexpected positive outcomes and we believe that this may be one of them, that there is a great opportunity for vision impaired people.
With that background, I would like to introduce Matt O'Kane, who is going to be our first speaker. Matt is the director of Notion Digital Forensics. He has had a long career in leadership roles in dotcom areas. Over to you, Matt.
MATT O'KANE:
Thanks, Peter. It was a great introduction, thank you very much. I want to set the background for this discussion and to recap, Australia has done an OK job, not a great job but an OK job, at helping kids who are visually impaired, who are blind, get all the way from early childhood to the point when they are ready to enter the workforce.
Remember there are certain challenges in this group. A limited number of jobs available, so they have got to be kind of clerical, professional, managerial. And in the 20th century, reading, reading of printed material was a key determinant of success for people in these kinds of roles.
But in the 21st century, we have computer technology so blind people can have the computer read documents to them. Severely low-vision people can have documents significantly enlarged. So technology has been a great enabler.
How do we go in employment? Sadly, since the start of the 21st century, unemployment has stayed stubbornly high.
Depending on whose figures you look at, it could be double or 4.5 times the general population. Underemployment is rife. Lack of participation in the workforce is almost double and that feeds onto poverty rates which could be almost a quarter within this population.
So we have levelled the playing field for printed material, why does unemployment stay so high? I think there are a few reasons. One of the drivers is fear of the unknown.
Like Peter said, severely low-vision and blind people, they are not very visible in mainstream society.
One of the things that you would learn from working with people with low vision or who are blind, is that eye contact can be challenging for people like us. And people find that very emotionally unsettling, not having someone give them eye contact.
There is also an historical reason. There is assumed uselessness, I suppose, within this community which is based on misunderstandings over years, that you don't get as many chances to get ahead as a low-vision or blind person.
Surveys have shown that employers have this deeply embedded view that sometimes a low-vision or blind person may not be as productive as a sighted person.
Another factor, of course, is comorbidity. When you have a serious visual disability or visual medical condition, that occurs sometimes with another serious medical condition and that can make employment decisions and employment accommodations very challenging.
It's also important to remember that comorbidity means that not everyone is going to be able to enter the workforce. But just because not everyone can, doesn't mean we shouldn't try for almost everyone.
And I think we also need to focus not just on employment but developing role models. These are people like Minister Ward, but also directors, business owners, leaders in the community, people to let mainstream Australia see that vision impaired and blind people are just like everyone else and they are inspirational models for this community as well.
There are a couple of solutions to look at. Science shows that affirmative action, even though it is politically controversial and can be controversial, science has shown it can have short-term negative impacts but the long-term impact is very positive. We are seeing that in certain programs coming up.
We need to see more role models, people leading organisations, directors and the ASX 200 and other organisations.
But especially we need to see people with lived experience blazing the path. I think Minister Ward might talk about his program which was announced just before the start of the pandemic, The Age of Inclusion, where you have the NSW Government targeting a massive increase in disabled employment which I think is great.
I think the timing of that is great. But I think the main thing I want everyone to think about here is the pandemic has shown we don't need to live in a workplace that is replete with social visual cues. We are working from home OK, and no one cares you have a guide dog, or no one cares that you can't read people's faces, no one cares that you are not looking at them. Misconceptions are reduced. They just care about what you can do.
And I think this gives us a massive chance to unlock the opportunity for low vision and blind people to get into employment and to get into business. So that is my summary of the issues.
PETER McCLUSKEY:
Thanks very much, Matt. We might move onto Simran. Simran Goyal is an associate at Ernst & Young where she works in the core assurance division. Over to you, Simran.
SIMRAN GOYAL:
Thanks, Peter. Good afternoon, everyone. As a young professional with an eye condition, working and succeeding in the workplace is a challenge however I think COVID has slowly begun to prove otherwise.
Working with a vision condition has its own set of dilemmas, and it starts in the interview room. Today no matter how much companies pledge allegiance to diversity, those who don't fit the typical characteristics are immediately considered as 'other'.
I have seen first hand how talented individuals with vision conditions are not provided a seat at the table because they cannot read from a piece of paper or they don't perceive their own surroundings in the same way as their able-sighted peers.
To a lesser extent, I face my own challenges; from snide remarks because I read from an inverted screen with a large font, to an overt lack of understanding about what it is like to work with an eye condition.
While we have made progress, there is more that can be done. Our managers, directors and heads of organisations should bridge the gap between working and effectively managing those who simply see differently.
A nationalised eye health survey estimates that 57% of economic cost of living with an eye condition is attributed to a loss of well-being. Part of this is not being able to be afforded the same opportunities as our able-sighted peers. Our brains are not less capable.
COVID-19 has begun reversing these sorts of conversations. We are now not strangers to working from home. 82% of the workforce working from home has seen a boost in productivity and focus, by up to 47%.
I have seen the same shift in my own productivity from home. I have a more flexible work environment and I'm more productive and also have the tools available to me to do my job properly if not better.
The question now circulates around how workplaces can integrate those who see differently, into their own teams.
Workplaces need to come to terms with understanding that a capable individual with a vision condition will always come equipped with the tools necessary to perform at optimal capacity.
I can attest to this, I am always equipped with the software and functional capabilities on my devices such as text to speech so I can work as well as others in my team. By knowing what I need to see better and to perceive, there is no claim that my condition is a liability to my workplace.
COVID-19 has shown the workplace that as a working population we can work anywhere with any set of circumstances. As we move into a more flexible work environment, those with vision-related conditions are able to better perform as they can access support mechanisms they need.
COVID-19 has shown that organisations should harness the knowledge that people from all walks of life are able to work efficiently and effectively if they are given the chance to show how they work, and why working differently is not a bad thing.
Looking at the support I was given throughout my schooling and university education to level the playing field, I would love to see how companies take a more proactive approach to having a conversation about what their employees actually need and facilitating those changes.
COVID-19 has proven that having a condition does not make me a liability but rather that our company starts seeing us as assets. Thank you, Peter.
PETER McCLUSKEY:
Thank you, Simran. That was excellent, as was Matt. Without further delay I would like to introduce Minister Gareth Ward. Minister Ward is the NSW Minister for Families, Communities and Disabilities. We are all looking forward to hearing your perspective and views on visual disabilities in the workplace.
GARETH WARD:
Thank you, can I also acknowledge the traditional owners of the land on which we meet. I’m on Gadigal land of the Eora nation here at Parliament House today.
What an outstanding presentation, thank you Simran and Matt. I feel like Elizabeth Taylor's seventh husband. I know what is expected of me but it is going to be difficult to make it interesting after those two presentations. I will give it a go and simply say that firstly I am really pleased to be here and I thank you for inviting me here. Also, thank you, Peter for your ongoing great work in this important field.
My story is one very similar to Matt's and Simran's. I have albinism so I am legally blind since birth. My condition is not degenerative over and above the fact that my eyesight will decline like anyone else with age but that can be preserved with glasses and other technology.
I have been on the end of various misconceptions. When I was born, the doctor said to keep me in the dark and behind closed doors. I had unkind teachers that said I would not amount to much.
I remember spending time in the library in my public school in Bomaderry enlarging notes during class time when I should have been in class with my peers, learning.
If you were growing up in the '80s or before that, the support through the education system, depending on where you were, were not necessarily up to standard. Certainly they did not reflecdt the standards that we expect from our schools today.
I had a principal that took me aside and saw that because of the way in which my teachers were engaging with me, he taught me to touch type and brought my reading up to standard. It undoubtedly helped put me in the position I am in today.
Because my eyesight is not so low that I required Braille, I needed larger text. In the '80s, the equipment that I needed was very expensive. My parents were small businesspeople who could not afford the $5000 closed circuit television it was going to cost my parents so I could do my studies from home.
My mum approached the local Lions Club, saving sight is one of their charity objectives, and they provided that closed circuit television that allowed me to do my work from home. That excelled my educational trajectory and I am very grateful and will always be grateful for the Lions for that support.
I frequently say to my political opponents, if you want to blame anyone, blame Lions Club International.
It is important that when there are examples of people who have done well, it is important we are an example to others of what people can achieve. I am the first Minister for Disability to have a disability anywhere in Australia. That speaks volumes about our Premier Gladys Berejiklian’s commitment to inclusion.
You would think that of all the proffesions, politics would be the last for somebody with vision impairment. Your opponents do not give you a break because of your vision impairment, think again. I copped every barb that you would expect. I have a job to do and I expect to be held to the same standards as everybody else.
Without going into the politics too much, the seat that I represent was always a Labor seat. I always thought that if this was the career I went to do next, would people judge me differently, not least of which because I look different because of my albinism but also because of my sight.
Not only do they not do that, in my electorate I have increased the margin each time in a seat that should be held by the party opposed to my side in politics.
Even though some people might have misconceptions about what people with disabilities or vision impairments can achieve, it is not the view of the community.
If you want any example of that, you only need to look at the increased majority I have been fortunate enough to secure in my home electorate of Kiama, which is very humbling and I am very supported by the community, which is an example of the fact that the community largely wants to see disability inclusion.
From our government's point of view, we were the first to sign up to the National Disability Insurance Scheme. We have seen 54,000 people who did not receive supports before, including those with visual impairment and blindness, receive support who did not get them; over and above what used to be provided.
As a state, we are continuing that work and that advocacy. My first bill as a minister was the establishment of the age and disability commission; a guard against abuse, neglect and exploitation of people with a disability.
The age of inclusion was mentioned by Matt. The Premier has said that she wants to have 5.6% of the public service with an identified disability. I was shocked that we did not already have that level of inclusion already. Agencies like mine, Family and Community Services, are well ahead of the target and others are well behind.
If we are going to go out there as a government, it is important to lead by example. I am always talking to business and industry about the importance of being an inclusive workplace and industry. P
eople with vision impairment will engage with services like anybody else and it is important that business and industry also send a message that they are genuinely committed to inclusion.
We need to do that. We are holding the various secretaries of departments to account for those targets. I really get annoyed when I see senior public servants say it is all about identifying people already in the system.
That's a great answer for budget estimates or a great political answer but I actually want to see affirmative action at the employment stage where we are identifying people with disabilities, not just those that are visually impaired or blind, but people who can add something to the workplace.
Perhaps I am an example, perhaps not, depending on who you talk to. I think you actually get more committed employees. You want to demonstrate that we are up to the job and you will not realise how benefited your business will be by having somebody with a lived experience do the job.
COVID-19 has been a fascinating time for so many of us. It has allowed many of us to work in a different way. I am more effective. I spend a lot of time behind a screen because of the work that I do but by enlarging the print I have found I can work as effectively as anybody else.
It is important that we have recognised some of the things we have learned through COVID-19, particularly the productivity changes in departments and industries that are much better off, should be our normal when we move forward. We can not only do more for business and government but be more inclusive in workplaces by using that technology.
At the moment we are currently reviewing the Disability Inclusion Act. There is public consultation. Previously we had disability inclusion action plans across all of our local councils and government departments. Essentially those plans are what each of those agencies has at its core as to how it is going to include people with disability at the core of its operations.
One of the things I identified myself is that some of those plans were not in an accessible format.
Agencies and departments were saying they were going to do great things but people with disabilities were not able to see them. I experienced that looking at Council plans that were not easy to read in format.
We are going to give those NDAPs much more teeth to make sure they are more transparent. I will be proposing that at a basic starting point all of those plans are accessible. As far as I'm concerned, this is the age where people with disabilities, and particularly visual impairments, can shine. We have improved in technology.
I can now read a book with an iPad, which I could never do as a kid. There is so much more opportunity to demonstrate the potential of people with visual impairment and blindness.
It is up to us. To be bold and brave and to show others what they can achieve because there is so much you can do in life but sometimes you require that encouragement and inclusivity to be able to have the ability to reach that potential.
PETER McCLUSKEY:
Thank you, Minister. A terrific overview. I guess, to kick off, there are questions from the audience already and my colleague Professor Grigg is going to help with the questions and make sure we get through as many as we can.
To begin, touching on some of the things each of the speakers have said, there is an affirmative action plan. Is there low hanging fruit, some first steps we can do to try to make businesses more accountable and more inclusive, and to actually make the affirmative action plan work?
GARETH WARD:
It comes back to working with industry groups and making them aware. Every business has so much it is doing that it is important to give these issues profile and make sure they are front of mind. Having industry leadership from various industry groups is very important and I have raised these matters with New South Wales business chamber and encouraged them to do the same with their other industry peak bodies.
When I was making my comments I mentioned not just identifying people in the workplace who may not have stuck up their hand and said they have a disability.
Some people feel bullied into admitting it which is extraordinary in 2020. It is also important that governments identify people at recruitment stage.
MATT O'KANE:
I have some input on this as well. Like Minister Ward, we need to be careful in making this a very positive message. Businesses can do a lot of things in society. We can't expect business to do everything.
I think what they are doing with NSW Government, giving people an opportunity to get started is a great way to start. Larger businesses, especially those in a better position, for example, banking, this is a great opportunity to give people a start.
At my stage of a career, it's less of an issue having low-vision because I have got runs on the board. I think it's really about giving those opportunities. Once people have the opportunity, they can run it themselves but you need to give them that opportunity to get started.
I would like to see more business participation, but I think we need to be careful about being heavy-handed about that. We can be targeted, and we can be effective in that targeting and be very positive.
One more thing I might mention is it is not just about employment. It is about business opportunities as well.
In a self-interest point of view, we could see opportunities for businesses owned by blind and visually impaired people get tenders at government or business. So it's not just about employment as the only solution.
SIMRAN GOYAL:
I think, just to reiterate what Minister Ward and Matt have already said, education is the first step in pushing for change. A lot of companies, I think, look at disability and diversity as a black and white spectrum. But vision conditions are all shades of grey.
So having an understanding of what it is to have a vision condition and what it is like to live and work with one, by having that sort of understanding companies can make more informed decisions about how to work with and manage their employees.
That will also start pushing greater movement and greater accessibility especially for university aged students into the workforce, giving them the confidence of knowing that their future employers will understand what it's like for them to work and how they can be effectively managed.
PETER McCLUSKEY:
Yeah. Certainly, I think at Save Sight Institute we have found that education has been one of the big problem areas. We actually started a family day to help with the transitions for young children starting school, transitioning to high school, and then transitioning to university.
And I think it's a very good point, that there is an enormous unmet need for insider information and harnessing the technology that we have got to make sure, for example, universities and secondary schools understand what they need to do so that vision impaired people can have the same opportunities and be able to read the exam papers the same way and things like that.
With our family days, we have actually got teachers to come along and we have had special education teachers and lots of people in the education system about that. John, you had an interesting example of the challenges in education.
JOHN GRIGG:
Thanks, Peter. Thank you for the chance to comment. In the HSC paper this week, the main stimulus was a picture and one of my visually impaired patients really struggled because the only clues they were given was a short description picture and yet they were expected to spend three hours writing an answer interpreting that image.
In 2020, we're still having these challenges. And the same with maths, they were not provided a tactile graph.
I have another question which follows on from Matt and Simran, trying to get that start in employment.
The question that has come up is, do you reveal your vision impairment at the job interview or in your CV when you apply for jobs? I would be interested to hear what the panel has to say about that.
MATT O'KANE:
This is an issue that comes up, especially for people with guide dogs or those who use a cane. I usually don't because I have the ability to hide it. It becomes obvious when I meet you. But I have the ability to keep it hidden.
It is hard for someone with a guide dog to do that obviously. But that is the opportunity of COVID-19. This is the door that could let people through and give them a go. These things are removed from the judgement of a potential employer. So I think it is a massive opportunity.
SIMRAN GOYAL:
Following on from Matt's point, traditionally especially in the corporate sphere we have had interviews where you have a group panel and then an individual interview.
Often for visually impaired people, group interviews are hard because you have to read from a stimulus. And if you can't read the piece of paper, your chances of succeeding in the group element are quite low.
With COVID this year, I know that our firm had video interviews and the group interview format was significantly different.
And that gave a huge step up to people who access information via technological means. And it levels the playing field a lot. Going forward, if we integrate more video capabilities, or just make the playing field for interviews more level, I think there is scope.
Definitely we have seen it through COVID and we have seen success given the people we have hired. Going forward, I think it's well worth integrating video means just to make it more accessible.
GARETH WARD:
I would say yes, I have. And it has never been a burden or a bother. I would encourage people to actually be blunt about it. Because if you are honest with your employer, that says something about your character, too.
There has been a tendency from some to think they have to hide it,but being upfront about these things is always the best solution.
PETER McCLUSKEY:
Thanks. If we turn that around, if you imagine you are the business, often the first time they encounter someone with vision impairment is a great concern for them as well.
Are there any tips the panellists would give business owners to help them better understand and to manage these sorts of complex issues? Matt? I think you have walked both sides of that one.
MATT O'KANE:
I have, yes. What tip should I give? Look, the easiest way to cut through that complex question is to say that people are people.
It's important to remember that you are not asking for something, it's important for visually impaired and blind people to not ask for something they are not entitled to. Not ask for something that gives them an unfair advantage. Ask for what is fair and equal and don't go beyond that. That’s an important position to take.
And if you take a principled position like that, I think that comes across. As the employer, the flipside of that is true. It's possible to make reasonable accommodations. After all, we are all human. But it shouldn't go beyond anything that is reasonable.
GARETH WARD:
Having a visual impairment, you know what sort of additional expectations you would have on yourself and on other staff.
It's interesting when the fully able-bodied staff can't meet the mark that you can. And it's by way of being a trailblazer and saying, if this is what I am able to do in terms of output, you should be able to do the same if not better.
So I think it's important when you have had the lived experience, to extend that to others. And I have seen people with disability be harder on other people with disabilities.
It's important that if you have expectations of how people treat you, then you are also moving in the same direction.
SIMRAN GOYAL:
From an employee perspective, if you have vision impairment, generally you know exactly what sort of tools you need to help you function at the optimal level.
Having that open and honest conversation with a potential employer gives them an understanding of what they might need to provide as well. And it takes out the guesswork for them to know if you are the right fit.
It helps them also understand the nature of the condition so it makes it easier for everyone if you come prepared showing, this is what I need, this is how I work. It allows the employer to humanise the condition a bit more.
PETER McCLUSKEY:
That's terrific. Maybe I direct this to you initially, Minister. Some in the audience want to know more about if employment commitments are part of future inclusion plans.
GARETH WARD:
Absolutely. As I mentioned, the Premier has committed to a 5.6% target. This is not just some quick headline. This is a priority, there are 14 Premier's priorities.
One of the ones she has sent to the secretary of her department is that she expects all departments to have 5.6% of their agencies with people with disability so we are doing our best with our recruitment process is to make sure something like that is identified and supported, so when people go through the recruitment process as Simran mentioned for the NSW Government, it's not something you feel like it's a burden to ask for extra support.
That will allow you to give the job your all as anyone else would. It's about providing that level playing field which is so important. That is now more so forming part of our recruitment, and also in terms of thinking how we meet those targets.
Not just simply identifying those already in the public service, but making sure we recruit people with disability to new jobs that exist as well.
PETER McCLUSKEY:
Simran, Matt, there is a question from the audience where this person who works in recruitment says he rarely gets people with vision conditions applying for jobs. Is that your perception living in the VI community?
Are there steps that can be taken to improve the well-being as you were saying earlier, Simran, of people living with a visual disability, to help them get out and apply?
SIMRAN GOYAL:
For sure. Often what happens is as we step out of the comfort of university, because university is a very supportive sector, coming into the workforce is quite scary.
It feels almost like falling off a cliff because we don't have the same support network as what we are used to in our education.
That often hinders us from applying for jobs because we are unsure whether we will be able to access the same level of support.
So I think people with a vision condition, especially university students should just take the leap. Step out and try.
It is a process of trial and error, and it is not always going to be the first fit which is the best fit. And if that's the case, it's the same for anyone trying to find a job.
I think for all students out there, take that step, take the leap, try and apply for all the positions you know you are capable of doing. Obviously don't apply for something if it is well out of your capabilities, and it will become a point of rejection because you are not the right fit.
But it is a matter of just taking the leap, stepping out, and realising that, yes, we might have vision conditions but that doesn't mean we are any less capable than any of our able-sighted peers.
MATT O'KANE:
That's a good answer. My answer is pretty straightforward. Groups like the Save Sight Institute do a great job with their medical innovations, and that means we are rarely seeing people in younger age groups with significant low-vision or blindness and I think it's great.
Part of the reason why you might not see applicants who are significantly visually impaired or blind is because at least in the 20s, 30s, and 40s there are not many of them. And that's a testament to science and I love science.
As you move into the older age groups, it becomes more prevalent. But these midcareer and late career people have a bit more career capital they can fall back on.
Obviously that doesn't always work. There are stories of people who had to give up their career when they have lost their vision and that has been really tough. It has been horrible for them, and then they have to start again and get someone to give them a go.
So it's all about, the reason you don't see many is because there isn't many but when you see them, please be a good human and try and look through the disability and look at the ability.
PETER McCLUSKEY:
The things that struck me, Matt, was the epidemic of older Australians who have significant visual disability.
Despite the massive advances in treatment, particularly of diseases like diabetic retinopathy and glaucoma, age-related macular degeneration, there are still cases of visual impairment and blindness.
I know from experience with my patients that it is often a very large hurdle and a major problem for them to come to terms with, let alone restart their careers.
Minister, is there anything in your proposals to support VI people that looks at specifically adult Australians? Older citizens?
GARETH WARD:
That's a very good question. Obviously, we want to make sure that our state is inclusive for all people and the strategies we have in place do not target specific age demographics, it is about inclusivity for everybody.
I know there are additional burdens there and that is a thing I can take a look at moving forward.
We have on our disability advisory Council people of all ages, and we appreciate their input. We are about to put the Disability Inclusion Act review to Parliament and anything we can do to improve a lot of people with vision impairments, it often assists older people with vision impairments anyway.
When you are older, your eyesight is not as good as it used to be. You will find that the features government has changed around accessibility, such as websites, are far more accessible today, they are real winners for older Australians.
PETER McCLUSKEY:
To follow on from that, one of the things that is important is having somebody who is able to join all of the dots and connect patients and VI persons with the right services. John, would you comment on some of the experiences from Save Sight Institute?
JOHN GRIGG:
Something that has come from the Save Sight Institute family day, one of the things that strikes a chord with a lot of people is when people see their eye doctor or doctor and are told they have vision impairment, unfortunately they think they are going to go blind and lose their sight the next day.
Then, they might be given a card to a vision rehabilitation service and there is a gap in the time to reach that phase.
What Save Sight has done with funding is have a patient care coordinator that links those families to the vision support services and that has been really well received. It has become overwhelmed.
This is an area of unmet need which we have seen come out of these family days, and we are seeing how we can expand the services to help people who are in the situation of never having experienced vision impairment, and working out which services are available.
It would be interesting to hear the panellists' experiences about this and linking between services.
PETER McCLUSKEY:
Thank you, John. Simran or Matt, would you like to comment on the role of patient care coordinators and how useful they might be?
SIMRAN GOYAL:
I haven't had too much experience with patient care coordination. But, I see the benefits in having somebody who can take the guesswork out of where you go next.
I guess this also falls in line, my experience is with counsellors and guidance individuals through my education more specifically, where I had a team at University who I could go to if I needed any sort of support with my exams or assessments.
And having that, I knew who I could reach out to. It reduced the stress and the guesswork in making my education more accessible and giving me all of the options and advantages that I could gain. I see the benefit in a patient care system.
It is useful, especially for parents if they have young children. If it is the early days of trying to understand the condition and how it will impact their lives, having somebody who can take you in the right direction is definitely helpful.
MATT O'KANE:
I agree. The patient care coordinator initiative is great. It is hard to negotiate the different commercial service providers and I think that having somebody to help navigate that world is great.
I think it is a great initiative and it is really helpful to people who find themselves in a situation. It is amazing, good thing funding that position.
GARETH WARD:
In relation to that, today the Commonwealth opened applications for $75 million of information linkages and capacity building grants to organisations and obviously that is all about keeping people out of the National Disability Insurance Scheme and helping them give them access to mainstream services.
I think having a good advocate is always important and I announced an extension of advocacy funding last week for those people who are not in the NDIS, because as we know, the majority of people with disabilities are not actually in the NDIS.
We want to make sure the scheme is there for people who need the support but we also want to keep people out of the scheme if we can. We have done a range of work with partnerships and I meet with Disability ministers every 90 days. We have a real say in things like the policy that exist under the NDIA.
We have been able to push for things like liason officers to assist people with disabilities who are going through a justice journey as a witness or a defendant.
We also have pushed for national advocacy funding. Advocacy grants are available from the Commonwealth but we also need advocacy at a state level.
For those that are not familiar with the work of the New South Wales Disability Commissioner Robert Fitzgerald I encourage you to familiarise yourself. It is all about the gaps that exist in terms of having somewhere to go so that if people feel like they are getting shoved from Quality and Safeguards Commission federally and other departments at a state level, somebody can help make sure you don't fall through the cracks.
PETER McCLUSKEY:
Thank you very much. Another question which is changing the conversation direction. Still important.
A couple of the audience members were concerned that as the supports move online, that may detract from the personal connection and one-to-one journey that you can have, Simran, as you are saying, at the University.
Do any of you think that is a plus or a minus as we go more into the virtual workspace?
GARETH WARD:
I think that is certainly a risk. I think that is the case for everybody. If you are working more from home because of COVID-19 and you are not interacting with as many people, that is one thing, but I can tell you that sadly we have seen an increase in the rate of suicide and mental illness across the community more broadly.
Often it is people who are more vulnerable that these circumstances impact on more so. It is important to reach out to friends, family, neighbours regardless if they have a disability or not.
One of the things I did when COVID-19 became very profound and front of mind was to ask my agency to ring vulnerable social housing tenants over the age of 70 three times and if we did not get a response to go out and see them.
I asked the same thing of the NDIA federally, vulnerable people, we were keeping contact with them going. Loneliness has been more profound than it has ever been in our history. More so for people who are living with disability.
Particularly people who are living with disability and are single. It is a profound group of people who have had to contend with extraordinary challenges.
MATT O'KANE:
I think that the in-person versus online delivery of services might be more a discussion for education where there is a need to switch formats. Or, where there are very specialised workplace arrangements.
Getting back to focus on employment and self-reliance and self-sufficiency, I am not sure how it relates to this.
I know some service providers provide job ready programs and maybe there is some benefit in doing this in person. But, ultimately, it is getting back to the basics. Giving someone a go. Support is important but it is the catalyst, not the driver.
SIMRAN GOYAL:
As we move more online, I think it gives people with vision related illnesses a larger scope of opportunity, simply because a lot of the tools that we need are technologically driven.
There is that. And, I think support will always shift. The means of support offered and the supports and services provided will always shift and adapt to the way in which the world changes.
In the past, we had exams on paper. Obviously, our support teams would give more time, extra lighting, for example. As the exams move online, supports have changed.
Yes, there is a risk of a lack of personal relationship building but support and support giving will manifest and change as the environment does.
MATT O'KANE:
It might be useful, if we all stop working from home as a society. One of the big challenges of low vision and blind persons is transportation. There is opportunity to help in that area. As I said, special circumstances, it is quite good at the moment. Online is opportunity, not a threat.
PETER McCLUSKEY:
I agree. It brings me nicely to the next question from the audience. This audience member has said that research has shown that access to visual rehabilitation services and to support for VI people is best if access to early. Yet, there seems to be a low uptake of these vision services.
This goes somewhat to some of the things John was saying earlier. Can you suggest any strategies to increase the uptake of referral and access to the services?
MINISTER GARETH WARD:
I can make some comment in relation to early childhood intervention support through the NDIS. One of the first things I took up at my first Disability Reform Council meeting on 26 June last year was that children were not getting the timely response they needed from the NDIS.
We brought forward a paper which encouraged the Commonwealth to have a timeframe in which if children were not accepted into a particular plan, that they would get a basic package which the Commonwealth agreed to.
If there is a child who has been accepted into the scheme and has not been properly assessed, they get a package of support. That addresses that very issue you raised. We do have a problem with people getting support early.
Again, that is not just exclusive to people with vision impairments. The youth justice system, a lot of people with hearing impairments simply did not get the hearing checks early enough. Eye checks were mandatory, hearing checks are not.
That could have impact on kids who end up getting involved with the criminal justice system and it is not recognised until they walk through the doors of a detention centre. It is utterly heartbreaking.
I would agree that the earlier you can get involved, the earlier you can help support our children and young people to get the right supports.
It frustrates me we still have problems today with the most basic issues in schools. One of my bugbears which I continue to raise is the way in which the national education standards authority treats testing regimes for kids.
Too often we see these kids given the right support, assessed early, for exams right up until Year 12, and then 5 minutes before midnight before their trial exams or their HSC, we are seeing a change to their plan and instead of using a laptop, they are told they have to use a scribe.
That is not acceptable. It's important to identify early and make sure the regime is kept in place.
Because to change that, you are changing what somebody has spent their life learning to use and we can't do that. You have to be consistent.
PETER McCLUSKEY:
Thanks, Minister. Absolutely correct. Matt, Simran, is there anything else you would like to add?
MATT O'KANE:
The only thing is the age of online is going to be the age where we can get some opportunities into the system, and I am excited about that.
I think we should do it, and we can do some funding with Save Sight Institute to help design programs to get that flywheel moving, let's do it.
PETER McCLUSKEY:
Fantastic. Look, we have reached the end of the session. I would like to thank very much, Matt, Simran and Minister Ward, for their time. And for their expert input into the session.
We aimed today to start the conversation, because clearly there is a problem and there is a lot that can be done. I think COVID has given us a real unexpected opportunity to explore new solutions and to use the things that are available to us to help with this.
Thank you very much, everyone. It has been a terrific session and I have really enjoyed it. Thank you very much for your contributions and your support.
ANNA BURNS
Thanks for listening to the Sydney Ideas podcast. For more information head to sydney.edu.au/sydney-ideas.
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Finally, we want to acknowledge that this podcast was made in Sydney which sits in the land of the Gadigal people of the Eora nation. It is upon their ancestral lands at the University of Sydney is built.
- Save Sight Institute
- Deloitte Access Economics: Socioeconomic Impact Report (2016)
- Coins for Cones: give today to help those living with cone-rod dystrophy
- Sydney Morning Herald opinion by Gareth Ward MP: 'You too can climb high: A message to young people just like me' (2019)
- LinkedIn Pulse article by Matt O'Kane: 'Towards better employment for people with blindness and low vision' (2020)
The speakers
Simran Goyal is a 22-year-old young professional living and working in Sydney. Graduating from the University of New South Wales with a Bachelor of Commerce, she currently works in the core assurance division at Ernst & Young, and is completing her Chartered Accountancy professional accreditation with Chartered Accountants Australia New Zealand. In her free time, Simran pursues her passion for photography, food and travel.
Diagnosed with Cone Rod Dystrophy at age five, Simran currently navigates various obstacles and challenges in her day-to-day social, professional and educational interactions. She lives by a strong belief in seizing all opportunities, and believes no challenge is too vast to overcome.
By sharing her experiences of living with an invisible condition, Simran has begun building a network of young “disruptors” who are making a case for change in society’s perception of ableism and ability.
Peter McCluskey is Director of the Save Sight Institute at Sydney Eye Hospital and Professor and Chair of Ophthalmology at the University of Sydney.
Peter is an internationally respected inflammatory eye disease specialist. He has a large clinical practice as well as being actively involved in clinical research and clinical trials. His laboratory research focuses on mediators of inflammatory eye disease and he has ongoing clinical and laboratory collaborations in the United Kingdom, New Zealand, Vietnam and the United States.
As Director of the Save Sight Institute at Sydney Eye Hospital, he is responsible for a research institute containing 11 research groups involved in both clinical and basic eye research that encompasses the common causes of blindness such as: macular degeneration, diabetic retinopathy, cataract and corneal disease. Additional research groups target glaucoma, electrophysiology, genetic eye disease, uveitis and ocular cancer.
Matt O’Kane is Director of Notion Digital Forensics. This Sydney-based consulting firm provides digital forensics and cyber-security services to lawyers and business. Before starting Notion, Matt held leadership roles in dotcom and online marketing firms. He has worked in IT for over two decades.
Matt holds a B. Sc. from UNSW and an MBA from the AGSM (UNSW). He is a sessional lecturer at UNSW Canberra (ADFA) in digital forensics and cyber-security.
Matt was born completely blind. After surgeries, Matt got a small degree of usable vision in one eye. During his lifetime, his eyesight has varied from zero to very little. Matt survived late-stage non-Hodgkin’s Lymphoma (cancer) in the early 1990s.
Since 2004, Matt has given a talk for new doctors “Impact of Blindness” at Sydney University. His talk outlines work, transport and other issues faced by low-vision and blind people.
Gareth Ward was born in Gerringong into a small-business family and has lived in the Illawarra and South Coast his entire life. Born with Oculocutaneous Albinism, Gareth has been legally blind since birth.
Gareth attended the University of Wollongong and holds Bachelor’s Degrees in Arts, Commerce and Law. Following his undergraduate studies, Gareth went on to complete the Graduate Diploma of Legal Practice.
Gareth is currently the Chair of the New South Wales Parliamentary Friends of the European Union and Secretary of the Bipartisan Action Committee for NSW Bravehearts. He is also a member of the Parliamentary Lions Club, the Parliamentary Friends of Ireland, the Parliamentary Friends of Asia-Pacific, the Parliamentary Friends of ANZAC and the Parliamentary Friends of Surf Life Saving.