Andrew Wilkie (Denison, Independent) Share this | Hansard source

That we must do more—much more—to assist people living with a disability is self-evident. The lack of support available to a great many disabled Australians, in particular the lack of certainty and equity available to them is obviously a regrettable and avoidable situation in a country as rich, clever and fortunate as ours.

The list of problems with the current approach to supporting people in Australia with a disability is simply too long to explore properly here. For a start, many people with a disability have no control over their care plan, and are forced to fit into one or more broad categories as defined by the bureaucrats. Moreover, services are patently underfunded and provide much less support than what is clearly needed. In Queensland, for example, a person who has daily incontinence issues might only be entitled to three assisted showers per week, leaving these unfortunate people to make do the best they can for the rest of the week.

Disability services and agencies vary greatly from state to state, and the confusing maze of federal, state and local services mean that many people simply fall through the cracks and are unable to access even the most basic care. Often people must queue for years and in some cases even compete against each other to access basic support. No wonder this cruel system has been dubbed the 'misery Olympics'.

And it is no small problem. Some 4.5 million Australians have a disability of some kind: 760,000 Australians under the age of 65 have a severe or profound disability and always or sometimes need help with their day-to-day lives. Half a million Australians are primary carers of a person with a disability while another 2.4 million are non-primary carers. Significantly, the rate of depression amongst carers is estimated to be 50 per cent.

These are the sorts of reasons I have been, for a long time, one of the many Australians pressing for a National Disability Insurance Scheme, and I am proud supporter of the Every Australian Counts campaign. It is also why the establishment of an NDIS formed one of the 20 negotiating points I took to both Julia Gillard and Tony Abbott after the 2010 federal election.

The hardship resulting from Australia's lack of services in disability care must end. An NDIS would provide us with a unique opportunity to untangle the confusing mess of existing disability services and develop a new system which places the interests of people with a disability or disabilities at its centre and includes them in creating a flexible care plan suited to their individual needs.

No wonder, then, that I was absolutely thrilled to hear that the government had accepted the Productivity Commission's recommendation to implement and fund such a nation-changing reform, and just as thrilled to be here today talking about the bill that promises to start the process of establishing such a scheme. This bill is the vital first step towards that momentous goal because I think it genuinely does provide a framework for such a scheme to be implemented and outlines the next steps needed for progress to continue. For that reason I will support the bill and trust that it makes a successful and speedy passage through the parliament.

But I emphasise that this bill is indeed only the first step, and one that will amount to nothing, unless and until the broad framework of the scheme is quickly and competently fleshed out—and, I would add, unless and until the reform is fully funded, and shown to be so funded, starting with the federal budget to be brought down in three months' time.

I also want to see the many outstanding questions hanging over the NDIS answered, and the increasing number of emerging problems fully addressed. For instance, will the NDIS have the flexibility to deliver services for people in unusual or unique circumstances? What about little Lachlan from my electorate, who I have spoken about in this place before? He has severe global development disorders, but his condition is so unusual that no diagnosis is able to be made, and that means he is currently unable to access existing support services. And what about the young boy from my electorate with NKH?

In both cases Minister Macklin has assured me the NDIS will specifically cater to an individual's incapacity as opposed to his or her diagnosis, and that seems to be the case in the trial sites. But at this early stage the bill lacks the detail necessary to enshrine this approach and the boys' families would understandably be anxious about future access to care for their sons.

There has also been the concern that the NDIS would cater only to people younger than 65, meaning those with a disability turning 65 would have had to move across to the aged-care system where, despite plans for reform, money is also in short supply and the capacity of aged care providers to continue to care for people at the same level as the NDIS is very limited. But I note the talk in recent days that people already covered by the NDIS will now have the option of staying with the scheme when they turn 65. This would be good, although there remains the significant problem of the aged-care sector needing to serve at least some ex-NDIS beneficiaries, as well as all those developing a disability after they turn 65. The Australian Blindness Forum and its member bodies in my electorate are particularly concerned about this dimension of the NDIS conversation, because blindness is not only a major disability facing a lot of Australians—something like 75 per cent of all blind or vision impaired people are 65 years of age or older.

More broadly, Headway Tasmania and the Brain Injury Association of Tasmania have also raised with me a number of other concerns they want the government to address as they move into the implementation phase of the NDIS. In particular, they have referred me to the four-month national consultation conducted by Brain Injury Australia, which involved 20 consultation sessions in urban and rural locations around the country. During this process, the organisation identified serious shortcomings in the current methods used to determine the eligibility and support requirements of people with acquired brain injuries and found that the NDIS needs to remove or reform a wide range of planned or existing practices so as to ensure that a person with acquired brain injury has their needs assessed under the NDIS in a multidisciplinary consultation with all the people involved in their lives.

It found a range of things and I will quickly list them because it is relevant to the point I want to make afterwards. They found: that the NDIS assessment processes must consist of multiple tools that can be flexibly applied where needed; that the NDIS assessment for a person with acquired brain injury should take place over time—periodically, and in a range of different contexts and circumstances—to ensure that a holistic and accurate reflection of their needs can be developed; that the assessment process must be able to distinguish between acquired brain injury and mental health issues, which may or may not be related; that, crucially, NDIS assistance must be available within the criminal justice system; that the NDIS should consider the needs of carers of people with acquired brain injuries; that the NDIS assessment and support should adequately cater for the enhanced needs of Australians living rurally and remotely; that the NDIS assessment and support systems must be culturally appropriate for Indigenous Australians; and that every step of the NDIS should include a fair and transparent appeals process.

That is a lot to do just with the issue of brain injury and the NDIS, but I have quite deliberately dwelled on that issue in particular because I think it is a very good example of just how complex the needs are for just one of the many groups that will be affected by the NDIS. Unless all of these complex needs are in fact addressed, for all of the groups affected, the NDIS will ultimately be a missed opportunity—and that must not be allowed to happen. My thanks to Darren Osborn at Headway Tasmania and also to the Brain Injury Association of Tasmania for their ongoing advocacy and support of Tasmanians with acquired brain injury.

Another aspect of the NDIS to which I will be paying particular attention is how it helps people with autism. I will be doing so because I have met so many people living with the very significant challenges of autism spectrum disorder and am mindful that their needs are not nearly as obvious as those of people with physical disabilities. That ASD must be covered by the NDIS is beyond question, but just as important is that the assessment tools relevant to the NDIS be so designed that people with ASD can have confidence that the assessment instruments appropriately measure their impairments and in doing so release the support so necessary for many people with ASD to live as full lives as humanly possible.

That support, like the support provided to hundreds of thousands of Australians with other disabilities, depends—and with the NDIS will increasingly depend—on access to competent disability workers. But that is already problematic because of the low pay and high staff turnover in the disability sector. The problem is set to get a whole lot worse unless the NDIS is accompanied by effective workforce reform. Frankly, the government needs to pay careful attention to United Voice and its call for significant workplace reform for the disability sector, including wages that much better reflect the qualifications and dedication of people involved in what is often very difficult work. If we do not look after the workers then the best legislative reforms in the world will come to nothing because there simply will not be the right workforce to effectively deliver them.

In closing, I wish to show my sincere respect and admiration for the thousands of Australians who have campaigned tirelessly for an NDIS over many years, including people with a disability or disabilities, their families and carers, disability workers, and the countless other people not directly affected but just wanting to make this country a better place. Thank you. This is your bill as much as it is the government's bill. In particular, I say thank you to those with a disability or disabilities who fronted the Productivity Commission. The stories you told shamed a succession of governments and energised this parliament into action. Your evidence outlined the case for bold and meaningful reform and showed beyond doubt that the current system must be demolished and rebuilt urgently, whatever the cost.

The NDIS is massive in scope and will not be easy to implement, but we genuinely are one of the richest and smartest countries in the world, with the resources to do this and to do it well. This is nation-changing reform and I am very proud to finally be able to support it in this place.

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