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Thursday, 7 February 2013
Page: 431

Mrs PRENTICE (Ryan) (12:47): I rise to speak on the National Disability Insurance Scheme Bill 2012. This bill establishes the framework for the National Disability Insurance Scheme Launch Transition Agency. I emphatically support the rollout of the NDIS and today's bills, should they receive appropriate scrutiny through the committee process. However, I do note that there remain concerns with the timetable of the rollout of the NDIS.

At present, approximately four million Australians have a disability. The NDIS truly is a once-in-a-generation reform to deliver a better deal for people with a disability, their carers and their families. In fact, since this bill's introduction, an agreement between the New South Wales and federal governments has been reached for a full statewide rollout by 2018, and the Queensland government has put forward a constructive plan to begin the rollout in Queensland. I welcome the progress that has been made so far, which continues with the introduction of this bill.

In setting up the agency, the NDIS will be able to be launched and operated by the agency at five sites across Australia from July 2013. Legislative requirements will be required to establish the mechanics of this agency, such as eligibility criteria and assessment tools. I understand that, practically speaking, most funding for NDIS participants will be in the form of individual support packages, but there may also be block funding for some entities to support people with a disability. In addition, the agency may provide general support for people with a disability who are not participants in the NDIS, through information, coordination and referral activities. There will also be personal planning provisions to emphasise a person-centred and self-directed approach. A plan must include a statement of participant goals and aspirations prepared by the participant, and a statement of participant supports to be approved by the agency.

These details are mostly vague at this stage, and I want to make sure that the implementation of the NDIS is done properly and efficiently. In total, there are three components: this NDIS bill, the NDIS rules, and the specific operating guidelines for the NDIS Launch Transition Agency.

Although the government did release a discussion paper late last year, neither the NDIS nor the operating guidelines of the agency have been released. The full details of how the NDIS will operate in practice will be further examined by the Senate Community Affairs Committee, which will report on 12 March 2013. I note that so far there have been approximately 613 submissions from organisations and individuals to the inquiry, which reflects the genuine and serious interest in making sure we get this right.

This is the first legislative step in providing funding to help people with disabilities participate more fully in social and economic life in Australia. It is a step in the right direction, and I know it is one that is wholeheartedly supported by the constituents of Ryan. Parents of the Glenleighden School, which caters for children with primary language disorder, had their support taken away by this federal government, and despite continuing representations they keep being knocked back. There are currently more than 80 students at the Glenleighden School, who suffer from primary language disorder, autism and other learning disorders, or a combination thereof.

The parents and medical specialists involved with primary language disorder have spent decades trying to gain recognition of even the correct terminology for the disorder in the medical community, let alone trying to get the government to recognise the severity with which it affects children and the symptoms that manifest. What we do know is that the families and children face great uncertainties and vagaries due to the obscure nature of PLD and that therefore there can be great difficulty in reaching a diagnosis of their child's disability. Unfortunately, misdiagnosis of a child with primary language disorder can even preclude parents investigating further and finding out about the great work and support the Glenleighden School provides, further adding to the pain of trying to help their children.

Children with PLD have the best chance in life if they receive treatment for their condition as early as possible. Without intervention there are profound long-term implications for affected individuals in terms of gaining an education and employment, leaving them feeling isolated and despondent and at a high risk of developing depressive and anxiety disorders.

In December 2012 I attended the Glenleighden School Showcase, which was a celebration of the work of the staff, parents and children and their continued success throughout the year. Parents have told me of the difficulties they face every day with their children—communication problems and the associated frustration and isolation—and how they are trying to overcome their challenges as best they can.

With the rollout of the NDIS, my sincere hope is that as a society we can shine a spotlight on the problems that families and children with disabilities face—and shine a spotlight on primary language disorder and other paediatric and adolescent disorders.

Of course, primary language disorder is but one challenge that can strike Australians. I have previously mentioned in this House constituents telling me how tough it is to live with multiple sclerosis, to have a wife with polio or a child with cerebral palsy, autism or speech-language impairment, to name just some examples.

Karyn and Gerard Reardon of Toowong have a son, Flyn, who has a rare chromosome mutation disorder with symptomatic effects similar to trisomy-21 and Turner syndrome. Flyn has been required to see a variety of specialists since birth, including paediatric physiotherapists, speech pathologists and occupational therapists. The services they can currently access are scattered across federal and state programs, or through state education. This creates unnecessary confusion for Karyn and Gerard and means that Australian children with disabilities do not receive the support they deserve. The Reardon family sees hope in the rollout of the NDIS for the future ongoing treatment of their child.

In education, it remains the case that there are no consistent eligibility criteria across Australian states and territories for children to access specialised educational resources. At the last election, the coalition proposed a $20,000 education card that could be used across state and territory jurisdictions to ensure that children at the outset have access to educational resources if they have a disability, and to ensure that if families have to or choose to move interstate there will not be a disruption to their education.

For all young people, when a disability such as paraplegia or quadriplegia strikes, they are often left with minimal support, relying on whatever community organisation is able to help. Youngcare has estimated that 7,500 young Australians with full-time care needs are currently living in aged care facilities due to the lack of alternatives, with more than 700,000 young Australians being cared for at home by family and friends.

For Youngcare, the NDIS does offer hope. However, they want to ensure that the NDIS is 'not just an injection of more money into a thoroughly broken, fragmented, unfair, inefficient and useless system'. In particular, young people in aged care accommodation are there simply because the resources do not exist to build alternative centres. It is a concern that, owing to the very large costs involved in infrastructure, as opposed to specific services that are also required, it will be difficult for any disability insurance scheme to truly assist the 7,500 young Australians currently in care.

Furthermore, Australians with disabilities face the very frightening situation that when they turn 65 the access they have to appropriate support through a Home and Community Care package will be reduced. This is because funding and management of the HACC package changes from their state government to the federal Department of Health and Ageing, and there is not necessarily consistency between the two. These problems further illustrate that no two states provide the same services. If you have a disability and you cross a state border there is no certainty about whether you will be better or worse off.

This highlights the crucial importance of the NDIS being a national program. The NDIS legislation does address this problem insofar as participants can be eligible if they have acquired their disability prior to the age of 65. However, those who acquire a disability after the age of 65 are left out and responsibility falls to the aged care sector. This issue is currently being examined through the Senate Community Affairs Committee inquiry into this bill. The committee has received submissions from many groups, all very concerned about not including people who acquire a disability over the age of 65.

Vision 2020 Australia, which represents over 60 organisations, particularly is concerned about this provision and say in their submission:

Vision 2020 Australia rejects the exclusion to the NDIS for people aged 65 years or over … and seeks guarantees that mechanisms will be established ensuring that all people who are blind or have functional vision loss will have access to equitable disability services and support and will not be disadvantaged on the basis of their age.

Vision 2020 Australia is rightly concerned that over 70 per cent of people who experience vision loss are aged 70 and above, based on figures from Access Economics. They therefore believe that the cut-off at age 65 does meet the equity and fairness test in the National Disability Strategy, and I share those concerns.

One of the major roadblocks to implementing the NDIS is the debt and deficit that successive Labor governments have run since 2008. The total debt of $172 billion accumulated so far has already compromised the ability of the Labor government to fund the NDIS scheme as the Productivity Commission would have liked. The coalition emphatically supported the government's commitment of $1 billion in the last federal budget; however, it is lamentable that this funding falls short of the Productivity Commission's estimates by $2.9 billion.

In Mitchelton, Peta Pitcher runs a childcare centre that, above and beyond its normal long-day-care program, offers support programs for families with disabilities, including children with autism. The childcare centre was previously able to provide inclusion support programs, but even with government subsidies Peta provides these programs at a loss of approximately $8,000 per child each year.

Previously, the Mitchelton Childcare Centre and others in Ryan have included children with a disability in the 'main' room and not just as stand-alone extra care. In December, that centre and others were told that if they included a child with a disability in the 'main' room they would no longer be eligible for funding under the Inclusion and Professional Support Program, funding that was available since 2008. I was told of one centre that might have to cut places for five children with a disability.

This story highlights the two-steps-forward, one-step-back approach of this current government. While they have highlighted the $1 billion they have given to NDIS so far, other programs like the Inclusion Support Subsidy have been affected by budget cuts. This apparent confusion arises partly because the federal government at this stage does not know which disability policies are working and which are not, according to the Council of Australian Government Reform Council's 2009-10 performance report into the National Disability Agreement.

Consequently, this budget shortfall has already impacted on the delivery timetable, as indicated by the Productivity Commission. The budget shortfall has the potential to compromise the ability of future governments to improve support for Australians with a disability and their carers.

The coalition has maintained its support for the NDIS and it is important we all work together to get this right. The coalition has proposed the establishment of a joint parliamentary committee chaired by both sides of politics to oversee its implementation. This would not only provide a mechanism for bipartisanship but would also serve as a forum where questions of design, implementation timetable, eligibility and funding model could be raised and worked through. To date, the Prime Minister has rejected our suggestion and, disappointingly, in the Senate in June the government and the Greens voted against the establishment of the committee. Unfortunately, to date there has been little detail provided by the government as to how individuals will be assessed, who will be eligible and what supports and services will be provided.

At this point in time, developing a complete picture of how the NDIS will unfold is limited by insufficient information. The work of the senate committee is critical and it is to be hoped that they have the benefit of the NDIS rules and the operating guidelines for the agency before they conclude their work.

In the absence of these other two elements it is difficult to determine if further amendments will be required to this legislation.

The National Disability Insurance Scheme is a program supported widely across my electorate in Ryan, and indeed across Australia. It has laudable aims to truly make a difference for the most vulnerable in our community, and everyone in this House wants to ensure that we roll out the NDIS appropriately and efficiently to give hope to Australians with disability and their families. I look forward to the Senate committee's inquiry to sort out any issues with this bill and I support today's bill as one step further along the road towards a full rollout of the NDIS.

I would also like to take this opportunity to acknowledge the wonderful volunteers in our community who act as carers to a family member or to a family friend. They are the unsung heroes in this story. They are the ones who volunteer 24/7—around the clock. They do not get special statues built for them. They do not get special recognition but they are the ones who devote their lives, and I pay tribute to all those volunteers in this sector.