Not so long ago Australians living with disability, their carers, friends and supporters had good reason for believing that inadequate disability support system they lived with would never change.

It seemed as if we could never persuade Australians to do something about the broken disability system we were living with.

Australians and their political leaders might have shown some personal compassion from time to time but no one would take up such an unsexy, expensive and difficult cause as fixing the disability system.

The Every Australian Counts story is the story of how we learned to change all that.

This is your story, the story of the Every Australian Counts campaign for an NDIS.

In the beginning

Just after the Second World War, nearly three generations ago, many Australians with disabilities were living in asylums and institutions.

Back then, Australia’s Prime Minister tried to introduce a universal social insurance scheme similar to the idea of the NDIS. It would have made a big difference at the time to many Australians with disabilities. However, it would have done little to improve the life of those Australians living in institutions.

In any case, the Labor government was defeated at the election in 1949. Chiefly’s scheme was not implemented.

Lessons learned from the Whitlam years

Many years later in the 1970’s the Whitlam government wanted to introduce a comprehensive disability system. It focused on supporting those with acquired disability. It was similar in a number of respects to the NDIS.

However, the legal profession, the Trade Unions and the Coalition Opposition of the day opposed the plan for the National Compensation scheme. With the defeat of the Whitlam government the dream of a universal scheme to support Australians with disability disappeared for another thirty-five years.

The first lesson we learned from this history is that the campaign for major disability reform had to attract the support of all the major political parties for it to be successful and sustainable. Our campaign had to be bipartisan.

Secondly, we knew the campaign had to be about the lived experience of Australians with disability rather than an abstract policy argument among various stakeholders.

The third lesson we learned was that we would only get one chance in a generation to change things. We would have to concentrate our resources, take every opportunity that presented itself and make every post a winner.

New approaches

By 2005, there were some hopeful signs of improvement in New South Wales .The State government had succeeded in establishing a Lifetime Care scheme for people disabled in motor vehicle accidents and were planning to extend it to all forms of acquired disability. New South Wales also took significant steps toward much-needed reform of its specialist services by implementing the Stronger Together program.

Reforms similar in scope and intent to Stronger Together had been happening in Victoria and Western Australia since 2000. However, still more than half of all Australians living with severe and profound disability were getting little or no support.

Around the country, many people were developing ideas aimed at providing more targeted and personalized support in the community. There was more focus on community organizations as providers. From these State based attempts to reform disability we knew any improvements were fragmented and that the financial realities of the Federal system meant any real change could only happen by introducing a national scheme.

On the positive side, we were starting to see the evidence that person-centered and community-based services were not only better for people with disability but also more cost-efficient than the old service models. The reforms led to more choice, which created a potential market for disability services. On top of that we knew from the NSW experience of Lifetime Care that the social insurance approach of investing in people with a disability worked.

2020 vision

Then in 2008 came a significant opportunity. The new Labor government convened a 2020 Summit to advise the new Prime Minister Kevin Rudd on big ideas for new policy directions in the future. A few different people lobbied to get the idea of an NDIS onto the Summit’s agenda. The most successful was Bruce Bonyhady from Victoria. Bruce made sure a delegate with a disability would carry the message to the meeting floor.

Once the government had to think about the problem they realised disability reform had to be on the national agenda. Bill Shorten, the then brand new Parliamentary Secretary for Disability, got the Cabinet to refer the idea of an NDIS from the 2020 Summit to the Productivity Commission.

The government appointed John Walsh, Australia’s leading health services actuary and a disability activist and thinker, as a Productivity Commissioner. John had been working on the insurance model as a method of no-fault disability support for most of his career. He knew the NDIS concept like the back of his hand, and had the practical skills to design a feasible scheme.

The alliance that forged the campaign

Then something important happened. The NDS, the peak body for disability service providers, AFDO, the peak body for advocacy organizations, and Carers Australia, the peak body for family carers, formed an alliance. The National Disability and Carers Alliance was most important because these groups did not traditionally get on well and often were in conflict. Their unity became an important symbol of the resolve of the campaign for an NDIS.

When The Productivity Commission (PC) reported, the campaign got two important boosts. Firstly, the Productivity Commission provided a clear description of the problem of the old disability system as fragmented unfair and under resourced. The PC also provided a solution to the campaign for an NDIS. The PC established a workable proposal that not only had the necessary resources to support Australians with disability but also described a new way forward for service provision based on choice and control for Australians with disability.

The Alliance decided to put together resources and initiate a full-scale public campaign for the NDIS. The Alliance hired John Della Bosca former NSW Disability Minister and the architect of the Lifetime Care scheme and the Stronger Together reforms. A committed national campaign team started working on the campaign – Fiona Anderson in Queensland, Geraldine Mellet in Western Australia, James O’Brien in Victoria and Daniel Kyriakou in New South Wales. The Alliance’s Executive Officer Kirsten Deane became the Deputy National Campaign Director.

Every Australian Counts

The campaign set to work. Every Australian Counts (EAC) seized on the guiding principle that changing the ignorance and attitudes of Australians at large was the key to success. EAC sought to appeal to Australians’ sense of fairness. We needed to make the point that the opportunities and lifestyles of Australians with a disability were important. The public needed to understand that Australians with disability only wanted what all other Australians assumed as a matter of right. EAC was born and launched on Australia Day 2011.

Economic commentators were very interested in the PC’s assessment that the NDIS would cost less than the cost of doing nothing and leaving the broken state systems in place. The old system forced many people into inappropriate and much more expensive care or accommodation. The PC also allowed the campaign to emphasize the productivity bonus achieved for the economy as a whole if a substantial number of people with disability and their carers returned to or entered the workforce.

The EAC full-time activists sought to give Australians living with disability the opportunity to speak their mind, and give their reasons for wanting an NDIS. The lobbying of MPs and Ministers and media appearances were done by people living with disability and their careers rather than the professional campaigners, giving the campaign much more authenticity. Email actions, live events such as the DisabiliTEA and rallies help spread the word about the NDIS and create a dynamic campaign.

The Australian Parliament eventually legislated for the establishment of the NDIS and put in place the ongoing trial to inform its roll out.

The new campaign challenge is to make sure that the NDIS stays on track and that the scheme is the best that it can be.