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Speech to National Labor Disability Summit

Disability Disability Rights
Portrait of Ben Gauntlett, who uses a wheelchair.

Dr Ben Gauntlett
National Labor Disability Summit
November 1, 2019

Good disability policy benefits all Australians.  When we think of disability policy, it is not “us” and “them”, it is "we", we the people of Australia need good disability policy because it reflects our values of diversity and inclusion.  It reflects our human rights obligations and there are critical economic arguments for why we need to have good disability policy.

Ladies and gentlemen, distinguished guests, I too acknowledge my deep respect to the traditional owners of the land, the Wurundjeri people of the Kulin Nation, and I pay my respects to their Elders past, present and emerging and acknowledge their continuing connection to the land.  I also acknowledge any other Aboriginal and Torres Strait Islander Elders or community members who are here today.

I would like to thank the federal and state Labor disability ministers for collaborating and organising this important workshop.  I was delighted to receive an invitation to speak.  

The role of the Australian Human Rights Commission is apolitical.  I find this role can be fulfilled quite easily, as ultimately disability policy is about people, not politicians, not political parties, not ideology.  At times we will be a respectful contradictor but above all we are independent.  We need to work with local, state, territory and Commonwealth Governments to ensure we have good disability policy that benefits the 4.5 million Australians with a disability and people who will have a disability in the future.  Our input can be particularly forthright in private or forthright and direct in public, but above all, we seek to be constructive and to educate.  At times when you battle around disability policy there is a temptation to light bonfires.  I encourage you to think we sometimes need to build bridges.

For the purposes of today, I intend to discuss three issues.  First, I'd like to discuss the National Disability Strategy, which is a foundation document and foundation standard upon which the National Disability Insurance Scheme is built.  Second, I'd like to discuss in brief and guarded terms the role of the Royal Commission and the important issues that the Royal Commission may consider and the role of advocacy in that Commission.  Third, I want to talk about data and the need to not solely rely upon market mechanisms to achieve outcomes in disability policies.

The National Disability Strategy was formulated in 2010 with six foundational elements or policy areas which included the justice system, health, education, personal support and also the issue of accessible communities.  It was at the time a foundational policy upon which the National Disability Insurance Scheme was built, but within the policy itself there was no well-defined implementation mechanism and there was no data collection mechanism.  What that means is there is still an issue with policy interfaces that exist between federal and state government.  Those policy interfaces can radically affect the life of someone with a disability.  

How do I know this?  Well, the year is 1995 and a somewhat let's just say scared schoolboy was lying in a spinal unit in Western Australia.  He had three fellow patients or what could be referred to as inmates who all shared the same room.  We all had a similar level of disability.  One person was Aboriginal and Torres Strait Islander, another had come from low socioeconomic circumstances and another had, in his own words, borrowed a car where he didn't know who the owner was and taken it for a test drive and had a little bit of an accident.

All four individuals ultimately had to deal with the policy interface between disability and other forms of policy.  I was the lucky one.  My parents, for reasons that I will obviously never know, had bought before I was born a one-level house.  The house had no steps.  We lived seemingly 15 minutes from everywhere, 15 minutes from the hospital, 15 minutes from the school, 15 minutes from the shopping centre.  When it came time for me to be discharged after six months, I was sent home to a house where one bathroom had been renovated by removing one wall.  I lived in three rooms - a lounge room, a bedroom and a bathroom.  Uber Eats didn't exist at that time.  

When I look to myself relative to the other people I was in hospital with, you need to see it in context.  They were all sent to an institution.  That institution was called the “Quad Centre”. The Quad Centre could not be described as a high point of Australian medical treatment, quite the opposite.  The Quad Centre is and was, in effect, a hospital with less staff and a truly exotic menu and internal culture.  Within those practices it's difficult to expect people to thrive.  

When it came to the issue of education, I went back to a school that was built to be completely wheelchair accessible.  The others were never in the position to go back to school. Ultimately when they left the institution, which was some years after they were admitted, they were thoroughly institutionalised.  The importance of the National Disability Strategy is that the policy interfaces are considered a matter for people with disability throughout their daily lives. In particular, housing and transport matter for people with disability.

If we're going to discharge someone from hospital, we should discharge them into circumstances where they can be respectfully looked after in the community.  We need their friends to be around them, we need it to be that they're not completely uprooting their life to get on with life.

We are ranked 21st out of 29 in the OECD for employment and we are ranked last for people with disability in poverty. The interfaces that exist between the National Disability Insurance Scheme and the broader National Disability Strategy need to be well thought out, in particular given that only 10% of people with a disability will be eligible for the National Disability Insurance Scheme. What happens to the other 90%?  We need to look after all Australians.  Some of the pressures that exist on the National Disability Insurance Scheme are as a result of the interfaces not being well thought out.  People want to apply for and be part of it because if they are not, they feel they're in the 90% with little to no service.  That needs to change.

It needs to change to enable the scheme that is the National Disability Insurance Scheme to flourish.  When you build a house, you always make sure the foundations are good.  The National Disability Strategy is the foundation.  The NDIS is the house.  If we want to make sure the NDIS moves forward, the foundations must be well thought through.  

We need to consider issues such as whether our discrimination laws are fit for purpose not just in relation to the workplace, but also when we interact with transport, premises and education.  People need to be able to live a seamless life.  My ultimate aim as Disability Discrimination Commissioner is to change mindsets. I love it when a young person with disability looks at me and just says "So what", the indignance, "So what, I don't care, get out of my way, I'm going to do something."  That's the attitude we need to engender.

So when we think of the important debates around the National Disability Insurance Scheme, I ask that you consider the National Disability Strategy.  Its interfaces are critical to ensuring that the Scheme can flourish.  Its interfaces include not just housing and transport but also justice and education and the interfaces cross local, federal, state and territory government. Good disability policy ensures that those interfaces are seamlessly and well thought through.

I've discussed the National Disability Strategy and my backing music has stopped, but I thought to add a little bit of colour I'd get on to the important issue, which is the Disability Royal Commission.  Now, it's obvious that the Disability Royal Commission has a key role to play in the disability sector.  I accept that.  I have to be reasonably guarded in my comments because as part of its role one of the issues it will investigate is what has been the role of the Australian Human Rights Commission in disability policy going forward, in particular are the laws that exist at present fit for purpose to enable the Australian Human Rights Commission, the Disability Discrimination Act, the Disability Discrimination Commissioner, to be relied upon or discharge their role correctly.  

However, I am somewhat concerned that when we consider the Disability Royal Commission, we can allow the darkness to overtake the light.  Of course, what it will consider will be absolutely graphic.  It will be astonishing some of the cases that will be considered.  But at the same time we need stories of light, we need stories of good policies, great policies, policies that reflect what's good in Australia, policies where people who have worked in the disability sector have done outstanding things, because ultimately for us to establish a position of not us and them, but we, we must make all people in Australia be attracted to working with people with disabilities and the only way that can occur is if we understand that in the long-term people will be attracted to stories of goodness and hope.  

That doesn't mean we cannot be critical, it doesn't mean we cannot be incredibly critical and forensic and to make sure that egregious conduct of the past does not take place again, but it needs to change and to do that we need balance.  

When we look at the National Disability Strategy, one of the concepts that it really raises, which has never really been acted upon by government to any systematic extent, is community awareness - the positive mindset of people with disability and the attitudes toward people with disability.

The Disability Discrimination Act will only ever get someone so far in the education and the work setting, but a positive attitude of the people in charge of the institutions can make a lot of difference.  We need to tell the story of why things like inclusive education are important.  We need to tell the story as to why people with disabilities are fantastic employees and we need to tell the story at the same time as to why we should not have people with disabilities as permanent participants in the justice system for no other reason than their disability makes them seemingly unfit to plead.

I gave testimony in the Aged Care Quality and Safety Royal Commission.  It was awkward because we didn't know what the number of younger people in aged care was or what resources were needed to ensure they could leave and never be placed in aged care in the first place.  We need good data.  Good data is good policy.  Good policy enables us to discharge our human rights obligations and whilst data is not often thought as the most attractive issue in terms of formulating good policies, I encourage the Labor ministers here today to consider whether a comprehensive national data asset fully supported by government enables policy to be formulated more efficiently and effectively.  

We need to be able to say where our resources should go and we need to say where things are not happening correctly and the way to do so is objective data.  But within the framework of needing data, within the framework of economics, there's also something to be aware of relating to the constant reference to the data.  The National Disability Insurance Scheme is built on the premise of the markets being able to solve issues.  

Economists for generations have known that markets fail.  In fact, in 2018, the Nobel Prize for economics was won by two people who acknowledged the potential for markets to fail.  A “market” made for something that will fail is not a good policy.  We need government to act as the steward of the market.  Ideologies may differ, but for the person on the ground, when the market fails, when you're in a nursing home for years at a time and you're a younger person, I don't think you really care about economics, I think what you care about is good policy.  And that's what we need to remember, that ultimately disability policy in Australia deals with people.

Well, ladies and gentlemen, thanks for listening to me.  I look forward to hopefully getting to know each and every one of you in the years going forward.  I was only recently appointed and I think one of the most important roles of the Disability Discrimination Commissioner is to listen, particularly to people with disability and what they consider to be important.  I look forward to listening to you in the future and hoping to develop good policies that benefits we, the people of Australia, for years to come.  Thank you.

Dr Ben Gauntlett

Dr Ben Gauntlett, Disability Discrimination Commissioner

Disability Disability Rights