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CripCroakey NDIS Part 1: Scandals, blunders & how change will only come when disability rights are front & centre

The NDIS has finally begun its full roll-out across Australia, after being trialled in various shapes and forms and places over the past three years.

It is hailed as the biggest social transformation in Australia since the introduction of Medicare, yet there are growing  fears that it is being derailed by the pressure of funding cuts, vested interests and ‘welfare blaming’, and that the understanding of true ‘choice and control’, the NDIS slogan, is being lost.

Last month The Australian reported that founding NDIS chair Bruce Bonyhady has been replaced “following a year of scandals and blunders”, amid a broader shakeup of the Board that will see a number of corporate heavyweights take up positions. That’s prompted concerns that it is lacking representation of people with disability.

That makes this two part article on the NDIS by El Gibbs, published as part of her crowd-funded #CripCroakey series, so timely and important.

In this first part,  Gibbs looks at worrying mistakes and directions in the emerging NDIS  and asks: where are the voices of people with disability and a deep understanding of human rights in all this?

In the follow-up piece, she will explore how the NDIS was designed to end the “lottery” system of support that people with disabilities endured and questions whether the “scandals and blunders” are  symptomatic of a scheme that is far removed from its goals.

***

El Gibbs writes

The NDIS was initially framed around the rights of people with disability – the right to be part of the community and to have the supports necessary to do that.

It also envisioned a new system that would mean people with disability would have ‘choice and control‘ (as the rhetoric went) over what kinds of supports they wanted and used.

Now, just a few years on, the NDIS is instead framed as a terrifying drain on the budget and part of Australia’s ballooning welfare bill. Neither are true, but there is an increasing hostility towards the NDIS at the moment that seems to miss crucial components of the Scheme and the rights of people with disability seem to have vanished in a mirage of budget emergencies and, troublingly,  perhaps in the makeup of the NDIS board, with experience with disability no longer necessary.

Of equal concern, the key promise of the NDIS – that it would revolutionise disability support services to centre disabled people and what they need and want – seems to be getting lost in a world of IT failure, problems with implementation and changes to how the scheme works.

The issues that the National Disability Insurance Agency (NDIA) had with the online portal from July 1 this year are well known, with many people not able to access NDIS funds and service providers not being paid. South Australian MP Kelly Vincent has strongly campaigned, among others, for the problems to be addressed as a matter of urgency. She said:

“This ongoing fiasco is a national disgrace. There is uproar when the Census website is down for 24 hours but the NDIS has not had a functioning website for clients nor providers for eight weeks. People with disabilities and their family carers are getting a raw deal once again.”

A review of the IT issues found that “the root cause of payment failure was not a single catastrophic event, but rather a series of compounding issues” and that the program was “under-resourced and underprepared in order to provide the accurate and timely support required by participants and providers when faced with ICT challenges.”

At the same time, a decision has been made to end the practice of making a float available for people using the NDIS who manage their own supports and funds. Previously, once a person was deemed eligible for the NDIS, and their plan and supports finalised, they could have this money in advance so they could begin to pay for the services they used.

Now, the NDIA has insisted that all funds are only available as reimbursements, leaving some people up to thousands of dollars out of pocket. As one consumer put it:

“Instead of being able to pay providers on time without hassle, people with disability are once again in a position of ‘welfare recipient’ – reliant upon an external body to judge whether they are the ‘deserving’ or ‘undeserving’ poor. Given that justification for needing these funds upfront has already been provided, this money should be readily available. Instead, the decision to remove the float subjects people to continued lack of dignity around funds that have been taken away without consultation with primary stakeholders from the outset.”

In some states, the NDIA has introduced what is known as ‘My First Plan’ – a modified and simplified version of the planning documentation that all people who use the NDIS developed. Concerns have been raised that this actually reduces the amount of choice that people have over their NDIS plans, and may restrict the types of services that they can use. As this Care Navigator petition said:

“The skeptical case would suggest that My First Plan shows that the focus of the NDIS rollout will be on maintaining existing clients on existing services. The implication is then that if you are in the group of people classed as unmet need you may face challenges in the priority of your access to the scheme.”

Adding to these issues are strong concerns about how the Information, Linkages and Capacity Building (ILC) and Local Area Coordinator parts of the NDIS are being both funded and rolled out.

Concerns were raised  when the NDIS was being designed about how services for Aboriginal and Torres Strait Islander people, culturally and linguistically diverse communities, and rural and remote groups that cannot be individualised would be delivered. The NDIS response to these problems was that this would be handled by the ILC program and through the hope of continued state government funding. In a blog post, Roland Naufal, from Disability Services Consulting, said:

“Let’s do the ratios. In full scheme the NDIS will be spending about $22 billion. The indicative budget for the ILC program will be $132 million…That’s a serious imbalance that even the economic rationalists would find difficult to justify.”

The First Peoples Disability Network is continuing to ask about whether the NDIA is listening to Aboriginal and Torres Strait Islander people about their very specific issues with the NDIS.

University of Sydney researcher John Gilroy wrote about the failure of the NDIS to date to address the needs of Indigenous people, in this article at The Conversation. He said that individual choice requires service and support opportunities to exist in local communities, so limited opportunities, especially in remote communities, equates to limited choice.

Last month, new concerns emerged that eligible new participants are being turned away in the ACT, where places have now been capped after participant numbers reached “total capacity” under the bilateral agreement.

I have been a critic of the model of the NDIS as a voucher system of support, with the only choice seeming to be on offer being that of a consumer, purchasing options in the market place. But even this neoliberal model of the NDIS seems to be out of reach.

Where is the flexibility to be able to choose what supports to use? Where is this magic market of disability support that was meant to appear with people with disability at the centre, exercising their consumer choice? As I wrote in 2013:

“The idea that people with disabilities have equal rights to able-bodied people comes from the social model of disability. But structuring DisabilityCare (sic) as a voucher-driven market for consumers ignores that model. Creating a unique system of support for people with disabilities that does not apply to able-bodied people is not a move towards a more accessible world. The ‘rights’ defended are those of individualised consumers within a deregulated market, with no expectations of structural change.”

Is this very idea of a market – as the only way to be able to have a disability support system that is flexible and tailored to individual people with disability – what is causing problems? Could a public and not-for profit system provide that choice and control central to a person’s right to a decent life?

Where are the voices of people with disability in all this?

The key idea here, and one I have highlighted before in this series, is that people with disability deserve the same rights as people who do not have a disability. It is the understanding that disability is not something that happens to some other people, but something that is part of normal, ordinary life. It is often said in disability circles that people are just temporarily able bodied – the idea that a ‘normal’ body is not a disabled body is a fantasy.

The NDIS was not to be a system that works for those disabled people “over there” – it is intended to become part of our essential social infrastructure, available to all Australians, which will ensure that having a disability will no longer mean poverty or a denial of basic human rights.

The social model of disability, while not without its own flaws, says that it is not my impairment that disables me, but that it is way the world is designed that is the problem. A world with stairs, and signs in flat lettering and noise and judgement is one that only works for people who can climb, read text, hear and look a particular way. This narrow criteria to be able to access the world means that much of what is taken for granted as ‘normal’ is actually restricted.

Fixing this restrictive world, with all its limitations, discrimination and outright hostility to anyone who functions outside this narrow criteria is not down to the NDIS – this is more the role of the National Disability Strategy as I outlined in my first #cripcroakey article.

However, the NDIS works within the Strategy to get people the right supports they need. Without these basic supports, many people with disability won’t be even able to start being part of the community. Getting the NDIS right, and making sure that the new system works for people with disability is a vital part of changing that narrow criteria of who gets to be in the world.

Proper individual supports are crucial to exercising human rights

At the core of the disability rights movement is the bleeding obvious notion that people with disability have the same rights as every other citizen. These rights have been codified in the UN Treaty on the Rights of Persons with Disability, that Australia  ratified in 2008, and include the right to live in the community, the right to education and safety and the right to participate as a full citizen in the world around us.

Putting disability support in terms of rights makes the gaps obvious between levels of citizenship for people with and without disability. Questions of access and support become questions of rights, not welfare or charity. I have the right to an education and to choose who I live with. I have a right to adequate medical treatment that I have some kind of say over. I have a right to be part of my neighbourhood, to take public transport, to go to a concert, to laugh loudly and get excited about things. I have a right to be safe, to go to bed when I want, to eat what I choose, to have someone I trust support me to shower and go to the toilet. Exercising these rights is not a matter of charity or welfare, but about the fact that my rights are the same as your rights.

Having the support a person needs goes part of the way towards exercising these rights. Having the infamous ‘choice and control’ over what kinds of supports a person wants and needs is integral to being able to give expression to these rights.

Of course, there are wider structural issues that both need to change and need to be recognised for people with disability to experience full citizenship as discussed in my first #cripcroakey piece, but providing the supports needed for a individual’s impairment is also part of this picture.

“The social model of disability focuses on structural change located far beyond individual needs – and yet meeting those profound needs is also fundamental to the rights of people with a disability. If I am disabled by my environment, then changing that environment will alter my experience of disability – but that change will not alter my impairment, nor make the need for personal support vanish.”

If I can’t get out of bed, or don’t have access to the type of gear I need, or are shut away in an institution, then how many rights do I have?


You can track the #cripcroakey series here.

Croakey acknowledges and thanks all those who donated to support #cripcroakey

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