Is an NDIS the sound of a new Australian settlement?

The National Disability Insurance Scheme (NDIS) is designed to provide disabled people with  the equipment, therapy and support they need. Craig Wallace says the rights-based scheme will be an exciting change.

It is twenty years since Paul Kelly wrote a classic work, “The End of Certainty”, which spawned the notion of an Australian settlement.

The settlement was the idea that Australia had forged an unwritten understanding around pillars touching on economic prosperity, industrial relations, immigration policy and government intervention. The settlement Kelly described was built on values and ideas which underwent a tectonic shift during the Hawke/Keating years.

Listen and you can hear the rumble of another change in 2012.  This time the consensus is that it is no longer sustainable or decent to let many thousands of people with disability, families and carers linger in intolerable circumstances without basic care and support.

While arguments continue around funding and jurisdictional responsibilities for disability, politicians on both sides seem to instinctively know that the patience of Australians for COAG style posturing on this one has simply run out. 

Just as recognition of indigenous Australian’s was long overdue by the time the 1967 referendum rolled around, so it seems we have finally decided that it is no longer right that people should be treated differently based on our disability.

At present, disability support in Australia is like a lottery – there is no entitlement to the most basic care, support, housing, aids, therapies and equipment.  The current system is capable of producing extraordinary and perverse outcomes, where two people with the same disability are treated completely differently. On one hand, a person may be supported throughout their life because they happened to acquire their disability as a result of a compensable settlement; on the other, a person who was born with a condition will be left to fend for themselves. 

Australians are used of the idea of some sort of safety net in most areas of life, and there is a basic political consensus about the fundamentals. It’s a settlement we seem to have agreed on, to avoid social unrest, rampant crime and Dickensian poverty, and remains intact despite shifts in tempo since the 1970’s.

So we have a minimum wage to guard against working poverty; there is Medicare so that a mum with a sick child need not shrink with fear of an emergency visit; and there is Centrelink or emergency relief so that no one who has fallen on hard times need starve.  At the extremes, there are bankruptcy laws so that those in deep accumulated financial trouble can slowly dig their way towards the light. 

Yet Australians with disability have somehow fallen outside that safety net we imagined was there for the worst of times.  We are the high wire act – 20 foot up, one toe, no harness and no escape.  Many families simply give up, and we are left with sad tales of people abandoning their relatives in hospital or at the door of a disability service.  Some say that in the dark and dreadful hours they feel driven to contemplate the most awful things.

Other people with disability simply wind up in nursing homes – people with active minds in their 40,s and 50’s rusting away next to people in their 90’s with dementia.  The Australian Institute of Health and Welfare tells us that more than 6,300 people with disabilities under age 65 are in this situation[1].  Research by the Summer Foundation and Monash University found that 21 per cent of younger people in nursing homes never go outside, 34 per cent never participate in activities such as shopping, leisure or visiting friends and family, and 53 per cent receive a visit from a friend less than once a year[2]. If ever a group merited R.G. Menzies sobriquet for being the forgotten people, it is these. 

At the Productivity Commission hearings in 2010-2011, while they were conducting their inquiry into disability care and support, even jaded officials watched aghast as people with incontinence spoke of only getting two showers a week. Others related how, If you’re wheelchair breaks, it’s all over.  Still more spoke of moving overseas – essentially becoming disability refugees – to find a support system that works.

More than that, we have a disability services system tracing back to the great patrician social reforms of 19th Century Britain.  Disability services are often built around agencies themselves rather than the needs of the people using them.

Like the famous hospital in “Yes Minister” that ran smoothly with no patients, services sometimes create rules based solely on their own needs, rather than those of the clients. Consider the young adults forced to go to bed at 8pm because that’s when the carer is rostered? This is the reality in Australia.

While some critics of the National Disability Insurance Scheme (NDIS) have asked why there is so much focus on ‘administration’ for the scheme, the reality is that the NDIS imagines an entirely different system of funding, and it is this part of the rights-based scheme that really excites many of us with a disability.

We’re looking to a scheme where the person with disability sits at the centre and makes choices about which services they purchase to meet needs.  For some, traditional old style services will no longer cut it and they will demand cheaper, more agile services which better meet the same needs.  Why stay in a gloomy purpose built respite centre, if a holiday cottage with an attendant carer could achieve a better outcome with less money?

I believe it is this ‘unbundling’ of funds towards the individual with disability that has the greatest potential to carve a new place for people with disability within Australia’s 21st Century settlement. A settlement where people with disability work, volunteer and begin to exercise our full rights and responsibilities as citizens.

Creeping demography is the other elephant in the room and it sits cheek by jowl with the NDIS as we forge our new deal. Women, who made up the majority of family carers in bygone days, expect lives and careers, meaning that the carer base is evaporating like warm school milk in the sun.  And by 2041, the Australian Bureau of Statistics predicts that one in five people will be over 65 and 7% of the population will be aged over 80 (the fastest growing group in Australia).

Yet here in Australia we are far from ready to include people who are ageing or have a disability.  Our urban landscape remains littered with barriers; workplaces remain inaccessible and hostile to anyone outside the ‘’young and hungry’’ mould; and business has yet to grasp the potential of customers with different needs, treating us as an obscure niche.

Soon the moment will come for one and all to take the blinkers off and begin to see community access, rights, services and supports for people of all ages and abilities as the next pillar of a sustainable 21st Century Australia.  We can’t afford not to. 

Craig Wallace is the Secretary of People with Disability Australia and is an occasional opinion editorial commentator for ABC Ramp Up. Craig was recently appointed to an expert panel advising on the implementation of the NDIS in one of the first pilot sites in the ACT. He was awarded a Centenary Medal in the Australian Honours List in 2003 for service to the community, especially on access issues and featured in the Australia Day Awards four times for work with the Australian Public Service. Craig works as Marketing Manager for a national organisation, has a disability and uses a wheelchair for mobility.