Why It's Worth Spending Big On Disability

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Amid all the sound and fury of last week, the National Disability Insurance Scheme (NDIS) passed through Parliament, slightly amended and renamed DisabilityCare. But what does it really mean for people with disabilities? And is it really a "foundation for a truly national scheme that will deliver meaningful change for thousands of people with disability across Australia." Or something a little more prosaic.

For those coming in late, the NDIS is a new way to fund disability support, that will kick off with four launch sites in July this year. The ACT will then join in from 2014, and the rest of Australia will be covered by 2018.

The NDIS model is intended to give people with disability far more choice and control over the scope, range and source of the supports needed to engage more fully with the world at large. This scheme is the end result of an extensive Productivity Commission enquiry and a significant lobbying campaign. Many disability funding systems around the world, are moving to an individualised allocation of resources, rather than a universal service provision.

Everyone agrees that the current system of disability funding is broken — historic underfunding has resulted in some bizarre inequities, where people are left without the basic things they need, while others, covered under various insurance schemes, have far more. Until recently, disability services were delivered by state governments, through not-for-profits and charity groups. People with a disability had little or no say over how their support was delivered.

The scheme that is now proposed is a different model, whereby individual "participants" will come up with a plan for the supports they need and want; get that plan approved, then get funding for the plan. This can happen in  several ways. People can:

  • run their plan completely on their own,
  • have a nominee who does it,
  • get the Agency to manage it or
  • engage a registered plan management provider.

I've discussed here before, the detail of what was in the draft legislation. Since then, there has been a Senate Committee that has travelled around Australia, hearing from people about the Bill. Nearly 1600 submissions were received, both from individuals and interested groups.

Some of the submissions have summed up the inherent tensions between the different stakeholders in this whole debate. On one side, are some people living with disability who are frustrated and fed up with the limits placed on their basic human rights. They speak forcefully about the need for more control and choice; about being able to take risks and make mistakes, just like everyone else. On the other are services who have built up expertise and skills, who are nervous about the wholesale introduction of individualised funding, particularly given some of the overseas experiences.

From the committee process, amendments were moved that have dealt with the concerns raised about forcing people to take legal action if they had a chance of recovering funds. The change now is that the agency will be able to take action of peoples' behalf.

The commitment to Australia's obligations under a range of international treaties has been strengthened, and an explicit acknowledgement of the need for advocacy has also been included.

The detailed rules, that will cover the details of the NDIS, have also been released, and submissions on those closed last week. This is where the meat has been put on the bones of the NDIS legislation, and the limited scope of this plan is laid bare. Here the limits on what supports will be provided are clearly spelled out in individualised clauses. No structural changes; no broader role for the NDIS Agency to work with other government departments; no awareness raising role. Sprinkled throughout the rules are constant references to sourcing supports at the lowest cost, or the best value for money.

This focus on cost, rather than basic human rights, underpins my original concerns about the nature of the NDIS beast. The UK experience (pdf) has seen a shocking level of turn over among staff and a significant drop in wages.

For people who are deemed able to run their own plans, there will be little or no restriction on where they can source the supports approved. They are free to use contractors, rather than workers covered by Awards or to employ people directly. But what about those who can't? The NSW Council on Intellectual Disability developed a key set of suggestions for people they describe as “on the fringe”.

"NSW CID calls upon the government authorities designing and implementing the NDIS to ensure equitable access to the NDIS by people with intellectual disability who live on society’s fringe. This requires that the NDIS includes:

1. An active process of engagement with individuals on the fringe so as to gain their trust and understanding of the benefit of support services.

2. Individual assessment and planning systems that accommodate the complex and dynamic needs of people on the fringe.

3. Flexibility in the kinds of supports that can be funded to accommodate the disparate supports needed by people on the fringe.

4. A robust workforce development strategy."

Other submissions also raised the particular needs of Aboriginal and Torres Strait Islander people who have unique needs and concerns with the current structure of the law.

All this is now to be tested at the launch sites, with Barwon in Victoria and the Hunter region in NSW, the only ones that will cover everyone. Tasmania and South Australia will host specific launch sites that focus on children and early intervention. The NSW Government has signed a COAG agreement with the Federal Government about the funding, and has agreed to fund the program for three years.

For some people, the problem now is how is this to be funded long term? And what guarantees are there, that after all the work to get this far, that the planned implementation in 2018 will go ahead as planned. Thanks to the clever folks at ACOSS and the Australia Institute, there's a bit of extra money lying around. And as the original Productivity Commission report spelled out, getting people with disabilities into work, will offset a large amount of costs in the years to come.

But this funding issue is a actually a bit of a furphy — one that has long been used to prioritise some kinds of spending over others. There's plenty of money around to increase the aged pension, and extend its asset tests and income limits. Plenty of money for more submarines and for making private health insurance cheaper. Plenty of money to subsidise big industries and pay them to train their staff.

People with disability have been at the bottom of the spending pile for a very, very long time. Delays to the meagre reforms that the NDIS offers, due to some mirage of funding shortfalls, are actually political decisions. There's plenty of money in the pot — so any bleating about funding should be given short shrift.

The idea that people with disability have the same rights as everyone else should not be a radical one. As a person with a disability, I should be able to get the train to work, live independently and be free from discrimination. But I don't believe that these rights should be cut up into individualised fragments, where I can buy the services and supports that will make this a reality. And instead of a social movement that demands universal access to public spaces, or real reform of disability discrimination, the NDIS is actually a long overdue funding catch up for the most basic of needs. The offer of choice within the NDIS, is really only the choice to be a consumer, instead of a citizen like everyone else.

New Matilda

New Matilda is independent journalism at its finest. The site has been publishing intelligent coverage of Australian and international politics, media and culture since 2004.

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