Disability in Australia – unfinished business

Address in the lead up to the United Nations International Day of People with Disability. 1 December 2014, Robert Garran offices, Canberra. 

 Talking Heads is a lunchtime address to the Attorney-General’s Department and Ministry for the Arts, hosted by the Secretary of the Department.

The series aims to bring prominent individuals to the Department to share their views and experiences with staff to introduce a fresh and challenging perspective on their work.  Recent Talking Heads speakers include: Geoffrey Robertson QC, Sex Discrimination Commissioner Elizabeth Broderick, Mr Andrew Denton, and Dr Karl Kruszelnicki AM.

 

I acknowledge that we are meeting on the lands of indigenous peoples and we respect their elders.

It is good to be here at Attorney Generals and to have the opportunity to be part of Talking Heads which by the way is a pretty good name for the speaking circuit.

On Wednesday it’s the UN international day of people with disability – it’s interesting the journey that this day has come on.  Historically some people in my community have asked what’s to celebrate, why do we need a day but I think more recently people have realised that this is an opportunity to be reflective and that’s what I want to do today.

And I’m taking as my theme the dangerous idea that the NDIS marks the end of our project for disability.

Dangerous ideas are in vogue – there is even an annual Festival of Dangerous Ideas, a forum for discussing the dangerous and unpopular, which is becoming a set piece in the intellectual calendar.

While most welcome ideas that challenge the status quo, a truly bad idea gaining a footing in the public mind is that disability reform is now done and dusted with the beginnings of a National Disability Insurance Scheme (NDIS).

Our investment in the NDIS is a landmark however it may mean little without deep structural, economic, legal and attitudinal change for people with disability in this country.

We are at the end of the beginning, not the beginning of the end.

But we have come a long way

Around a decade ago, disability was not a place for ambitious politicians to be.  The disability movement was fragmented.   We did not get media. I very much doubt that a disability leader like me would have been addressing a non-disability agency today.

In the way of these things all of a sudden an issue reaches a tipping point and comes out of the dark.

For disability that was hundreds of thousands of Australians mobilised in an extraordinary campaign to build support for the NDIS.  We have bipartisan support, media attention and News Ltd editorialising in favour.

The campaign for the NDIS has done much to move disability into the first rank of public issues covered by serious journalists who now find themselves scrutinising an extraordinary public investment. And an investment that is coming from all of us via the Medicare levy.  We have a $20 billion plus national insurance scheme.  I don’t know about you but I can’t even conceptualise $20 billion.

Because that investment is so important my organisation announced on the weekend that we are convening a Citizens Jury on the NDIS that will provide the first user-led national scorecard which is formed, assessed and delivered by Australians who have helped fund this scheme and those who have direct experience as participants within the seven trial sites.

The Jury will hear direct evidence from the witnesses who are people actually experiencing NDIS in the trial sites, these will be completely randomly selected so there is no risk that its just the converted. They will get to weigh evidence using this testimony as well as other information and arrive at a scorecard that tells us what’s going well and where we can improve

The Jurors and Expert Witnesses will be selected by newDemocracy Foundation, a leading independent, non-partisan research organisation that specialises in citizen participation. The selection process will be totally independent. The Jury will sit in early 2015.

The idea is to close the deal with the Australian people – we are all paying for it. Here’s a chance to hear directly from people with disability on the ground how its going to a jury consisting of taxpayers.

A scorecard will go to the Senate Committee, the Agency Board and every member of Parliament in every jurisdiction that’s hosting a trial site along with the Prime Minister and every Chief Minister and Premier. The CEO of the Agency has agreed to meet with the Jury and respond to the findings.

To their credit the NDIA have embraced this idea.

Of course I don’t know what that scorecard – and we are still only 18 months into the scheme – will say.

But what I can conceptualise as a former public servant is the reality in public policy that you can throw lots of money at a problem and things just stay the same or you get more of the same.

The secret fear at the heart of every public servant who has ever attempted reform is the idea – what if we do this and nothing changes.  What if the world simply doesn’t co-oporate?.

The potential for that to happen is not something that people like me tend to talk about for the NDIS because we have so focussed on getting the reform over the line.

The other thing that you would know is that in public policy “stuff happens” that is out of your control.

Public policy has to work in a real world and I believe the biggest risk to the NDIS is things in our world that make the job harder.

This includes: the need for jobs and economic security; the need to address widespread entrenched obstacles to access with a weakened disability discrimination framework; poor community attitudes; and a systemic experience of abuse, neglect and segregation.

With the exception of indigenous Australians in remote communities, some Australians with disability are as disadvantaged as it is possible to be in a developed country.

Depending on where they live some people with disability are completely unable to physically access banks, doctors surgeries, shops, planes and the entire built infrastructure of whole towns in Australia.  Some people are held against their will in institutions, drugged, sterilised or abused in private boarding houses. When people with disability are murdered it is sometimes portrayed as an unfortunate tragedy or an act of mercy, rather than a criminal action[1].  Women with intellectual disability are subject to forced sterilisation or have their children snatched away[2]. Around 37,000 people with disability don’t go outside their homes[3]. We routinely accept practices like job advertisements in inaccessible formats which preclude people from applying.

Australia has a National Disability Strategy endorsed by the Council of Australian Governments which is intended to encompass these broader issues.  Yet the Strategy needs work and we need to set some priorities to build on what we have achieved through NDIS.

The Strategy has 6 themes but I think there are really three totemic and systemic issues which need national attention. These are jobs, discrimination and abuse.

JOBS AND ECONOMIC SECURITY

45 per cent of people with a disability live in or near poverty; more than double the OECD average of 22 per cent.[4] We rank 21st out of 29 OECD countries in employment participation rates for those with a disability.[5] We rank 27th out of 27 in terms of the correlation between disability and poverty.[6]

It has been like this for some time.  Successive governments on both sides of politics have attempted to address this through the payment system.

Income support changes don’t tackle some big questions: why are people not getting jobs? Why are people falling out of jobs?

We need to ask how we set people up to fail. It’s time we tried new ideas to get more people with disabilities into meaningful work.

When the Commonwealth and the states and territories split disability policy in the 1990s, disability support services were pushed to the states and income support, while employment programs were delegated to the federal government. The NDIS is shredding this divide, so it’s the right time to ask whether there is more that the states, territories and local government can do. These bodies have leverage, they procure from industries that provide many base level jobs; why not make employment of people with a disability a national priority through COAG?

Attitudes are also important and governments invest in programs to change them. Yet we have little hard evidence about what attitudes are and what might actually work to shift them.

It’s time for an internationally benchmarked national survey on community attitudes towards people with disability.

I would also like an employment target right here in the Australian Public Service (APS).

But I would like to see some signature measures.

In the US, employment programs support people with disabilities to serve as interns in the White House and on Capitol Hill[7]. I think that a program like this would be powerful and timely here.

There are broader issues at work. Statistics show that people with disability participate less across all life domains

A US survey conducted in 2009 shows that participating in one area of life, like sport or the arts, can be the tipping point for people to re-engage in employment.[8]

Disability Employment Services could provide assistance to build friendship networks or facilitate community connection, personal capacity and independence.

As the NDIS turns disability support funding on its head, we might also ask whether the principles of personalised budgets, which are shaping the NDIS, could apply to Employment Services.

If services don’t get people jobs, we should be able to take service funding to another provider, including job agencies outside the government funded employment network.

DISABILITY DISCRIMINATION

Australia’s Disability Discrimination Act 1992 (DDA) was a great achievement but more than 20 years on I think it is in need of reform.

It is not up to the task of creating the accessible infrastructure that Australia needs to cope with an ageing population or to deliver on the promise of the NDIS.

The DDA framework forces ordinary people with disability to expose ourselves to litigation in an adversarial contest with services we use every day.’

While discrimination on the grounds of disability is illegal in Australia, the Australian Human Rights Commission has no power to enforce decision or to initiate actions on its own motion.

The onus is therefore on individual people with disability to absorb the time, costs and risks of complaints which can only be enforced by the Courts.

I don’t believe that, on top of everything else, Australians with disabilities should be mired in endless litigation with employers, airlines, shops, restaurants, schools and civic buildings with whom we interact on a regular basis.

The DDA’s mechanisms like the Standards and the former Commonwealth Disability Strategy are half-hearted.

A Commonwealth Disability Strategy was meant to deliver action plans across Commonwealth agencies, yet never really stepped up.

The DDA Standards Process, created as an engine for change, has been slow and unambitious in delivering transport standards which exempt, of all things, school buses, and have timelines that extend to 2032. Incorporating Access Standards into the Building Code took over a decade

We need a discrimination law backed by robust mechanisms with teeth like the Americans with Disabilities Act,[9] with an implementation authority capable of enforcing regulations, standards and driving continuous industry improvement.

Above all – and beyond the issue of enforcement – I am concerned that the DDA provides a kind of mixed messaging both to people with disability and community.

Access is good sense and a legal obligation. Yet somehow the DDA manages to achieve neither of these mindsets.

It creates a limbo which doesn’t lever change outright or have sufficient ‘muscle’ to allow people to accept access as a given and move beyond compliance.

Over time, we do need a shift from providing access due to compliance to responding to demand.

Businesses need to see this as something they just do as part of good customer service.  People with disabilities need to become consumers of importance and value especially as a wave of retiring baby boomers acquire disability.

I am constantly surprised that industry isn’t more active on this – the tourism industry is an excellent case in point. You’ve got an army of cashed up grey nomads pushing north into tourism areas and the tourism is spending its time pushing back against regulation rather than marking the wonderful accessible tourism that we do have in Australia.

Right here in Canberra we have probably one of the most accessible cities anywhere in the world.  We have art galleries, museums, parks, the arboretum, all the major shopping centres accessible, most of the bus networks up and yet did we see any marketing of Canberra as an accessible tourism destination during Canberra 100?  No

The final and most pressing issues are ones that will be close to many of you – ABUSE AND JUSTICE

Australians with disability continue to be shut away, segregated and disadvantaged in the justice system, disbelieved as victims of violence and assault and over-represented in miscarriages of justice.

At one end, people like Marlon Noble, who was held for more than a decade without charge because of his disability[10], experience rough justice and indefinite detention without conviction, yet authorities frequently do not investigate and prosecute violence and abuse against people with disability.

A good example was the Four Corners show St Anne’s Secret which exposed a bus driver’s repeated sexual abuse of intellectually disabled children, many of whom could not speak or communicate in any way.

Watchdogs like the Victorian Public Advocate report that abuse is rising and is in some cases double what it was two years ago.

People feel unsafe everyday.  The ABS says people with disabilities often feel unsafe even at home.

And it depends where home is.  We also know that abuse festers in places like boarding houses. A report by the NSW Ombudsman showed that vulnerable residents in boarding houses have been assaulted by staff and other residents; have died; and have been denied basic rights, including contact with their families.

The Royal Commission has heard many stories.  My organisation provides support for people telling their stories in the Commission and we appreciate funding from the Australian Govt for this project.

And of course last week’s Four Corners program was a shocking insight into the way that violence and rape became pervasive in one well known and trusted service provider in Victoria/

Sadly it didn’t shock me

I know that this is not confined to one institution, in one state at one time.  For a century people with disability have been housed in large, medicalised places – institutions, asylums, boring houses, lodges, villages and large group homes as well as segregated schools and workplaces.  I was in three of these places.  If you stack vulnerable people into social crevices the predators will come.

I believe that abuse of people with disability is part of the family of historical wrongs that will haunt our country unless we turn to face them.

I would go as far as to say that it is up there with the abuse of child migrants, the stolen generation, the abuse of young defence personnel and the hidden horror of domestic violence.

To those who say that there are too many inquiries going – The Royal Commission into child abuse and the mooted inquiry into ADFA.

I say – I can understand this – but look also at the opportunity, this is a moment where we might turn over all the rocks at once and give the abusers no safe ground to flee too.

To simply make preying on the vulnerable unacceptable.  It should be unthinkable that you would touch children. Unthinkable that you would hit women and unthinkable that you would use power, sex and violence against someone who has a disability.  Who simply cannot get away, speak out or fight back.

People with Disability Australia has called for a comprehensive inquiry into responses to abuse of people with disabilities at schools, boarding houses and other congregate facilities, examining in particular the presumption that people with disabilities cannot give reliable evidence.

This is all unfinished business: our task now is to begin the rest of the journey, and realise the benefits of the NDIS, our discrimination laws, the goals of the UN Convention on the Rights of People with Disability – all areas of policy that this Department played such a key role in moving forward.

Thank you.

 

 

[1] http://www.abc.net.au/news/2014-09-16/young-victim-blaming-at-its-very-worst/5745346

[2] http://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCIQFjAB&url=http%3A%2F%2Fwwda.org.au%2Fwp-content%2Fuploads%2F2013%2F12%2FWWDA_Sub_SenateInquiry_Sterilisation_March2013.docx&ei=doRTVM-fCcn68QXMo4DgDA&usg=AFQjCNHam9Pv-jfCAfagYApHh-HGD4gSmQ&sig2=QwJ61ztXuOctZa1c3gSMuw

[3] http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4439.0main+features52011

[4] Source for these statistics? http://www.pwc.com.au/industry/government/assets/disability-in-australia.pdf

[5] Source for these statistics? Ibid

[6] Source for these statistics? http://www.smh.com.au/federal-politics/political-opinion/jobs-not-newstart-the-key-to-disability-pension-reform-20131231-3049f.html

[7] http://masonlife.gmu.edu/news/stories/news-congressional-internships

[8] Source for US 2009 survey quoted here? http://www.disabledsportsusa.org/survey-finds-disabled-sports-usa-participants-twice-as-likely-to-be-employed-as-adults-with-disabilities/

[9] Name and date of US Act referred to here. http://www.ada.gov/

[10] http://www.abc.net.au/rampup/articles/2011/12/09/3387845.htm

Craig Wallace

Craig Wallace is a marketing manager and project coordinator with Nican a national community organisation and has been a community leader with various organisations for more than a decade. He is the President of People with Disability Australia, a leading cross disability rights organisation in Australia and is a member of the ACT BLITS business group.