The role and place of disability advocacy
Could I acknowledge Mr Kevin Cocks, Chair, DANA, Steve Doran, CEO, Regional Information and Advocacy Council and my colleague Senator Rachael Siewert.
When I took on the disability portfolio sixteen months ago, it came with a surprise. I had been operating on the assumption that because Australia is a wealthy, advanced Western economy that people who have a disability get the support they need. I was wrong. But I think I shared the operating assumption of most Australians.
And it’s a reasonable, if mistaken, assumption from the point of view of a taxpayer. You pay your taxes and you assume government does its job. The true reality is only really appreciated if you or a family member has a disability or your profession gives you that exposure.
The fact that this is the case is proof enough of the need for and importance of advocacy. Disability advocacy is central to improving the lives of people with disability. Without disability advocates, some of the most vulnerable remain voiceless.
All Australians should be able to choose how to lead their lives. To be independent, to be treated fairly and with respect. However, many are restricted in their opportunities. For people with disabilities, ‘finding a voice’ means having the ability to influence decisions about their lives – whether social, economic or political.
Advocacy in a general sense is a form of lobbying. And lobbying is a natural part of any democratic system. The term lobbying as we know it today became frequent not long after America’s War of Independence. It was used as early as 1792 when an ex-revolutionary war officer named William Hull was hired by war veterans to lobby for additional compensation for their war service.
The United States has had a long and controversial history of lobbying. Australia, on the other hand, has had a more subdued history. Despite lobbying and the work lobbyists do in Australia receiving less attention, it remains an important part of our policy-making process.
Lobbying can help an individual, a group or a particular sector communicate their views on matters of importance. Every sector that seeks to act on someone’s behalf to improve their lives or influence government policy, must ensure the lobbying and advocacy is being delivered to the optimal benefit of the client. Disability advocacy is no different.
Emergence of Disability advocacy
The emergence of disability advocacy is a relatively recent occurrence, post the Second World War. Disability advocacy can be traced back to the 1960’s when, for instance, the United Cerebral Palsy Association in the United States brought together parents and family members of people with cerebral palsy who were concerned about what would happen to the sons and daughters. Indeed many many disability service providers and advocacy groups in Australia can trace their origins back to parent initiated organisations in the 50’s and 60’s.
Stemming from this was the work undertaken from Dr Wolf Wolfensberger who heard concerns and developed the term ‘citizen advocacy’ and coined, as did others, the term ‘normalisation.’ Dr Wolfensberger believed that people with disabilities needed independent representation by people from the community. His work led to a number of citizen advocacy programs across North America. All had good intentions; some succeeded but some didn’t do so well. Dr Wolfensberger, with help from John O’Brien, looked at the good and bad forms of citizen advocacy and published “Standards for citizen advocacy program evaluation.” His work helped Australia develop citizen advocacy programs beginning in the 1980’s. Since the first citizen advocacy program in the early 1980’s, many organisations representing the interests of people with disabilities have now opened up, helping people with disability find a voice.
“Citizen advocacy”, which today generally refers to matching a person with a disability with a volunteer who represents their interests as if they were their own, is just one form of disability advocacy. It also involves individual advocates helping a person with a disability who requires one-to-one advocacy support. It involves working with parents and family members to help them advocate with and on behalf of a family member with a disability. Equally, it can support people with disabilities to advocate on their own behalf. And of course, it involves influencing or securing legislative and policy changes in order to seek a better deal for people with disabilities.
A comprehensive advocacy system is important from individual advocacy to systemic advocacy. The needs of the person with disability in disability advocacy must take precedence.
What is the role of government?
Government’s role is to support Australia’s disability advocacy sector and to ensure it has the capacity to support the needs of people with disabilities and respond to their changing circumstances. Its role should be to listen and work with advocacy groups to ensure people with disabilities continue to have increased access to advocacy services and ensure advocacy groups continue to improve their services to people with disabilities.
The government should also strive to ensure people with disabilities have the opportunity to access advocacy which is delivered in ways that meet reasonable disability advocacy standards. Importantly, they should have the opportunity to fully participate in the advocacy activities undertaken. And they should be encouraged to participate and be involved in community as far as possible.
I hate it when politicians list dollar figures of what programs they have supported. Anyway, I’m going to breach my own rule to demonstrate that the former government wasn’t all bad and did seek to support advocacy services to people with disability. Although, I do acknowledge that no government has covered itself in glory in the area of disability. In the Coalition’s last Budget, approximately $12 million was provided under the National Disability Advocacy Program to 66 disability advocacy agencies operating across Australia. In that same budget, over $2.5 million in extra funding was provided to introduce an independent third party quality assurance system for advocacy agencies funded under the National Disability Advocacy Program.
Without going too far and over-burdening disability advocate groups with Key Performance Indicators, it is important to set goals and see that standards are met. A quality assurance system for government-funded disability advocacy groups is an important mechanism to improving standards and in turn, the lives of people with disability.
Although it is often a long time between drinks in terms of advances for Australians with disability, disability advocacy has had some impressive recent successes. The capacity of the autism sector to obtain bipartisan support prior to the last election is a case study in itself as to how change in one area can be achieved. The concept of an NDIS is the most recent example of how disability advocacy can make a difference at a structural level.
The support for Australians with a disability is a frayed patchwork. Government needs to do better particularly for people with severe disabilities who need long-term care. Few have put it more eloquently than Bruce Bonyhady.
“Australia’s disability support system is inequitable, fractured, under-resourced and slowly collapsing under the weight of its own inadequacies, while sub-optimally consuming billions of dollars of taxpayers money each year.”
Bruce has been a great advocate for the sector and was appropriately recognised in the Queens Birthday honours with an award in the Order of Australia. The idea of a national scheme that moves to a support system based on need rather than service rationing is worth examining.
The Coalition fully supports the Productivity Commission Inquiry and will seriously consider its recommendations. While serious structural change is needed I also recognise that there are some issues which need to be addressed sooner rather than later.
This NDIS is an example of how sector-wide change can be pursued when disparate groups work together. The desire and passion in the community to see major changes to Australia’s disability support system is evident in the push and groundswell of support for a National Disability Insurance Scheme. The grassroots Mad as Hell campaign started by two parents, Sue O’Reilly and Fiona Porter is a prime example. People have been frustrated by the current system for years, but with the enormity of the situation, they have felt unable to do anything about it. The Mad as Hell campaign is providing a platform. It has brought these individual voices together and is creating one huge microphone that’s pointed squarely at Canberra.
Cross party work
Something that I don’t think is generally appreciated outside of the Parliament is that probably 90 per cent of the legislation that passes through the legislature does so with the support of most political parties. And the area of disability is where partisanship is most readily put aside. And where there is partisanship it is of a much less intense nature.
I want to acknowledge the genuine commitment of my portfolio counterparts, Rachel Siewert and Bill Shorten, in advocating for Australians with disability. They have both made an important contribution to raising the profile of disability issues. But having said that we certainly want to spur each other on and keep each other honest.
I also want to acknowledge the coming of another parliamentary colleague, another advocate for the cause. I speak of the election of Kelly Vincent to the South Australian Parliament on the Dignity for Disability ticket. Kelly has great poise and intelligence and will make a major contribution to public life.
And I also note the election to the House of Commons at the recent British election of Conservative MP, Paul Maynard. Paul is the first person elected to the House of Commons with cerebral palsy and the first to have attended a school for students with special needs. Can I recommend both Paul’s and Kelly’s first speeches if you haven’t had the opportunity to read them. Their speeches are a great resource for disability advocates.
Finally, I’d like to share one concern and one frustration. Not in a spirit of partisanship, but as object lessons for all governments.
Firstly, to my concern. Recently I have been asking myself the question (putting aside the argument as to whether the Government’s stimulus was needed or not), I ask myself what a difference just a fraction of the $16.2 billion spent by the Government on school halls and covered outdoor learning areas could have made in the area of disabilities. To put this $16.2 billion (and the $2 billion on roof insulation) into perspective – the total funding to the social and not-for-profit sector under the Government’s stimulus spending was $11 million.
Against the backdrop of debt funded spending, I also wonder about the degree to which Government debt could compromise the ability of this and future governments to do the things required in the disability sector. I flag it as a concern.
Secondly, to my frustration. Billions of dollars can seemingly be found at will for health and hospitals, but relatively small amounts can’t be found for the disability sector. It’s all the more frustrating when you consider that despite the obvious problems in our health system, on the whole, it’s not a bad system. You generally get what you need. And it is certainly preferable to be ill in the Australian hospital system than almost anywhere else in the world. Yet over the last few months you could be forgiven for thinking Australia had the worst hospital system in the world and that fixing the health system was the greatest social policy priority.
The need to fix our public hospitals – or build school halls or insulate roofs for that matter – is as nothing compared to the need to improve the support given to Australians with disability. It is important to keep the needs and challenges in other portfolio areas in perspective.
That is my frustration. It may be one that you share.
It is important for organisations such as DANA to keep politicians opposition and government up to the mark.
Prior to today I was sent some very detailed questions from DANA. I acknowledge that many present today have thought more deeply and for longer on the subject of disability advocacy than have I. So I take the DANA questions as homework.
Best wishes for the remainder of the conference and thank you for the invitation to join you, to learn from you and to give a flavour of the opposition’s thinking.