With federal and state elections looming, pressure is mounting on political parties to commit to a National Disability Insurance Scheme, as the Mad as Hell campaign shows.

The political power of people with a disability, their family, friends and carers has been gathering momentum with the formation of a new lobby group called ‘Mad as Hell’.

They are adding their weight to the growing Australia-wide campaign for the establishment of a National Disability Insurance Scheme – a goal that seems to have united almost the whole disability sector across all states and territories.

Sick of going to state disability services with a begging bowl on a case-by-case basis, Mad as Hell members are about to run a marginal seats campaign in the coming federal and state elections.

Spearheaded by two women, Sue O’Reilly and Fiona Porter, both mothers of people with a disability, the campaign which started at their kitchen tables has gained tremendous grassroots support and wide media coverage over the past few weeks.

“We’re as mad as hell and we’re not going to take ‘no’ for an answer – and there are over a million of us,” Sue O’Reilly told Work ‘N’Care. Sue is mother to Shane, 20, a young man with high support needs.

Sue recently returned to Australia after a long period living in the UK, following the death of her husband, David, who died of cancer.

In the UK, Shane had received terrific support through government programs available to all people with a disability. Sue said she was shocked upon returning to Australia to find very limited support was available to her or to other families with a member with disability.

Like dozens of other disability and advocacy groups around Australia, what Mad as Hell members want is simple. They are calling for a Medicare-style insurance scheme which provides lifetime care and support for people with a disability.

Work ‘N’Care has previously written about the campaign for such a scheme. The Federal government is currently looking into the feasibility of a National Disability Insurance Scheme but the Productivity Commission report is not due to be completed until next July.

Mad as Hell members say that’s too far away and that the best time to get action on the issue is now – just before state and federal elections, and are urging people to sign the Mad as Hell pledge (see link below).

Ms O’Reilly said In NSW, Queensland and Victoria, if you become disabled as the result of a motor vehicle accident, you get lifetime support under a no-fault insurance scheme which we all contribute to through vehicle registration green slips.

But if you are born with a disability, or acquire one through other means, you are reliant on your family for primary care for the rest of your life.

“The fundamental problem with state and federal disability services across Australia is that the current system is really badly designed – despite having a budget of some 5 billion dollars,” Ms O’Reilly said.

“A National Disability Insurance Scheme has been costed at slightly more than this at around 7 – 9 billion dollars, but the extra could be funded by a 0.8 percent increase in the Medicare levy.”

Ms O’Reilly said a prime example of how inadequate the current disability support system was came from the fact that "the only way to get supported accommodation in NSW for a person with a disability is to actually abandon them", she said.

She said she had personal knowledge of about 80 people with a disability in NSW who were currently being shuffled around the state from one temporary respite placement to another, as no permanent accommodation was available for them within the system and parents could no longer cope with their care needs.

“Basically, government policy is based on exploiting our deep love for our children and our sense of duty and our inability to contemplate relinquishment,” Ms O’Reilly said.

“There are millions of us who are directly affected by the dire state of Australia’s current disability support system.

“But we need to recognise that we belong to one of the most numerically powerful groups in Australian society, and we are united by the anger and outrage we feel at the grave injustices we see all around us every day.

“We are united by our wholehearted desire for sweeping, transformational change, justice and equity, in the shape of a no-fault, entitlement-based National Disability Insurance Scheme.

“Millions of people equals voting power. Ordinary Australians have just one moment of power in a democracy – when we cast our votes on election day.

“Proposals for a transformative National Disability Insurance Scheme are now being considered by the federal government, and a federal election is due later this year.  So now is the time for all National Disability Insurance Scheme supporters to unite and harness our combined voting power to ensure fundamental reform of Australia’s disability support system.

“It is way past time those of us who are Mad as Hell to make our millions of votes count.”

Woman’s Day magazine recently ran an interview with Sue O’Reilly and are running an online poll asking people if they would part with $8-10 a week to improve services for the 1.8 million Australians who are profoundly disabled.

You can vote on the poll (and read Sue’s story) here:

You can also support the campaign for a National Disability Insurance Scheme by signing the ‘Mad as Hell pledge’ here:

The pledge reads:

We’re mad as hell. We are not going to take it anymore. And there are millions of us.

I pledge that in the next Federal and State elections I will vote for a political party which publically promises to transform Australia’s broken, inefficient, crisis-driven disability support system by:

  • Introducing and supporting a National Disability Insurance Scheme (NDIS) immediately after the Productivity Commission study, due July 21.
  • Ensuring people with a disability and their family or nominated representative decide the best ways to use funding received to meet individual needs.