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Wednesday, 13 February 2013
Page: 1166

Mrs D'ATH (PetrieParliamentary Secretary for Climate Change and Energy Efficiency) (12:57): I rise today to add my support to the National Disability Insurance Scheme Bill 2012. The introduction of this bill follows a report by the Productivity Commission in 2011 recommending that Australians should be insured against significant disability. To shape this legislation, which will see the scheme launched and operated in five sites across Australia from July 2013, there has been extensive consultation across the country. This framework has been crafted by what we have heard from people with disability, their families and carers and disability organisations across Australia.

The bill establishes an independent agency to deliver the scheme and lays out key elements such as how eligibility will be determined and the supports the NDIS will provide. Our scheme will provide eligible individuals with the care and support they need when they need it; give individuals decision-making power, including being able to choose their service provider; provide high quality evidence-based services which manage lifetime costs of care; be simple to navigate, with links to mainstream community services; recognise the essential care and support of families and carers and support them in that role; facilitate each individual's community participation, access to education and employment opportunities; and be managed on an insurance basis.

The National Disability Insurance Scheme Bill 2012 sets out how a person can become a participant in the scheme, how the participants will develop personal goal based plans with the NDIS Launch Transition Agency and what reasonable and necessary supports will be assured to participants. The establishment of a National Disability Insurance Scheme through this bill also gives effect in part to Australia's obligations under the United Nations Convention on the Rights of Persons with Disabilities. The first stage of the scheme will benefit more than 20,000 people with disability living in South Australia, Tasmania, the ACT, the Hunter in New South Wales and Barwon area in Victoria.

It would be remiss of me not to again express my extreme disappointment that Queenslanders will not be among the first beneficiaries of the scheme. I reiterate that Queensland's exclusion is the result of LNP Premier Campbell Newman's decision not to support an NDIS launch site. It is interesting to note that the Premier has since back-flipped in his views on the NDIS, no doubt as a result of the overwhelming public support for this reform that exists throughout our Queensland community. However, there is more work that needs to be done to reach a funding agreement that will support the 100,000 Queenslanders estimated to be eligible for the NDIS across our state by 2018. I encourage Premier Newman to put his politics aside and work with the federal Labor government for the good of our community.

We know that our National Disability Insurance Scheme will absolutely change the lives of people with disability, their families and carers. Because of this bill, for the first time in Australia's history people with significant and permanent disability will start to receive care and support over their lifetime regardless of how they acquired their disability. This legislation will give people with disability a right to realise their potential and have choice and control over the decisions that affect their lives. People with disability, their families and carers have been waiting a long time for change.

That is why, to prove how serious we are about delivering for Australian families affected by disability, the Gillard Labor government have already put $1 billion on the table. Over four years, this $1 billion in funding will be used to start rolling out stage 1 of the NDIS. Our commitment includes $342.5 million for individually funded packages for people with significant and permanent disability, $154.8 million to employ local area coordinators to provide an individualised approach to delivering care and support to people with disability, $58.6 million to assess the needs of people with a disability in the launch locations and $122.6 million to start preparing the disability sector for the new way of delivering disability services. This includes building the capacity of disability organisations to adjust as the NDIS rolls out. There will also be $240.3 million to build and operate an NDIS information technology system and $53 million to establish a new National Disability Launch Transition Agency to coordinate implementation and manage the delivery of care and support to people with a disability and their carers in launch locations.

We want Australians with disability, their families and carers to start benefiting from this fundamental reform as quickly as possible. That is why we will deliver the first stage a full year ahead of the timetable set out by the Productivity Commission. As I mentioned, the first stage will begin in the middle of this year. This stage will initially provide care and support to around 10,000 people with significant and permanent disabilities across the country, expanding to cover 20,000 people by mid-2014. Individuals eligible in the launch sites will have their needs assessed and be supported to develop individual plans to deliver ongoing personalised care and support over their lifetimes. In addition to the initial funding of $1 billion, agreement has already been reached with NSW for a state-wide rollout of the NDIS across that state from 2016. In a historic $6.4 billion deal, the federal government will contribute just over half of the costs to assist more than 140,000 people with a disability living in NSW to lead dignified, decent and productive lives.

The most important feature of our landmark scheme is that it takes an insurance approach—like Medicare—and shares the costs of disability services and supports across the community. Almost all of us know someone who has a disability, and we know that misfortune and tragedy can strike any one of us, or someone we know and love, at any time. I recently met with a family from my electorate who have a young son, Luca, suffering from Duchenne muscular dystrophy, or DMD. They explained a bit about DMD to me, and I learnt that to date there is no cure for DMD. The DMD gene is found on the X chromosome, so the disorder manifests primarily in boys and affects around one boy in 3,500. This disease knows no boundaries; it affects all races and cultures. The average life expectancy for children afflicted by DMD is early to late 20s, and anyone can have a child with Duchenne muscular dystrophy.

I would like to share with the House Luca's father's story. He said:

On a July day in 2010 my boy Luca, aged 4, who had no other health issues, was diagnosed with Duchenne Muscular Dystrophy—a destructive muscle disease that is progressive and fatal.

Our path in life as a carefree (in the scheme of things now) family changed forever. That same day I decided we would do anything and everything to fight for my son's life.

In my travels, I have found parents, family members and friends around the world that have the same feelings. We all think about action, intent, passion and fighting for a chance. Of which our son was not born with.

Here in Australia this land of hope—a young man's country—the NDIS will give our son a fighting chance to a life. These boys can aspire to become high achievers and [my boy] can die a young MAN and not a forgotten disabled wasting away boy. The NDIS would be a collaborative effort for all disabled people who need a decent life, love and happiness to the end.

Caring for a Duchenner brings the following elements of care into play. Physical, emotional, behavioural, cognitive and educational issues are all part and parcel.

Let the NDIS program serve as a catalyst that helped transform the landscape for disabled people in Australia. We are not seeking exceptional funding; we seek equity for all disabled people and their families. With all states and territories sailing in the same direction we can make a CHANGE!

Thank you, LEVI DE BILDE

My meeting with the De Bilde family was truly a moving experience. As a mum of two, I can only imagine their sorrow upon hearing their son's diagnosis and the burden they must bear day after day. The De Bildes should not have to support Luca alone. It is a tragedy to look into parents' eyes when they say that they wake up every day knowing that their son will die and will die young.

In the coming years, people affected by disability in Queensland, like Luca, may be eligible for the NDIS, thanks to this bill. When that happens, Luca, with the support of his family, will be able to decide for himself how to manage his care and supports. I know many in this chamber will have met with many families like Luca's family, who come not seeking support for themselves but wanting to make life better for all people with disability and their families and carers. People like Luca deserve a hand up, not a handout, to make it through school, to get a job, to go on to further study, to follow a dream.

I would also like to share with you the story of a very inspiring young man I met in October last year, a man who is most certainly following his dream. Thirty-three-year-old Glen Sheppard from the Sunshine Coast has Down's syndrome and was diagnosed at a young age with severe autism. Glen cannot speak and instead uses facilitated communication and a Qwerty keyboard as his voice. To communicate in this way, Glen needs the support of his dedicated mum, Pam, and carers like Adam from Aspley's Cup From Above cafe in my electorate. Glen will not let his disability stop him from achieving his goals and he is successfully studying creative writing at university. Glen has already written a collection of poetry and launched a murder mystery novel called Solved in Silence. For Glen and his support network, life is about what he can do, not what he cannot.

Sadly, for many people with disabilities, life has for too long been about what they cannot do. PricewaterhouseCooper's report, Disability expectations—investing in a better life, a stronger Australia, found that over 45 per cent of Australians with disability live in poverty and, when it comes to employment participation for people with a disability, Australia ranks well below the OECD average. Furthermore, the report recognised that family carers of people with disability in Australia have the lowest national indicator of wellbeing, and the number of voluntary family carers is declining. These findings are an indictment of a flawed support system—they are unacceptable results and we must do better.

Around six months ago, I held a forum on the National Disability Insurance Scheme in my electorate, at the Redcliffe RSL. I would like to thank the Minister for Disability Reform, the Hon. Jenny Macklin, and Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas, for attending and providing an overview to people in my community about the NDIS. I met a family at the forum who told me their son was being cared for in a disability support house. They told me the house had just cut the recreation programs for residents, offering no alternatives, and there is no recourse to this decision under the care packages they receive. The onus is now back on family members to visit and take their loved ones on outings to provide extra stimulation in their lives. This is proving increasingly difficult for the ageing parents who raised their concerns with me.

While disability funding goes to the service provider, consumers are at the mercy of the system when it comes to decisions like this. Our NDIS funding will be attached to the person, not the provider, and this change will drive a competitive, consumer driven disability support market.

I continue to meet people at my local events and at mobile offices who tell me that the disability support system as it exists now is letting them down. There is so much support for the NDIS in my community when I explain what the new system will mean. We need these reforms.

I would like to take this opportunity to thank and acknowledge the Queensland coordinator of Every Australian Counts, Fiona Anderson. Fiona presented at my NDIS forum, and I know she has travelled all over Queensland explaining what an NDIS will mean for people with disabilities and their families. Fiona has been inspired by her son Sandy, who has a disability, and it would be tough to fight any harder for a cause than Fiona has fought to see the introduction of the NDIS. I have been honoured to fight alongside Fiona for these major reforms, and I congratulate her for her tireless effort.

I would also like to acknowledge the great work that special schools, disability service and support groups, and community organisations such as Lions and Rotary do every day in my electorate to support people with disability—groups such as Medicare Local, Endeavour Foundation, ROPE, Cascade, Breakaway, After-Care, Multicap, Synapse, Pine Rivers Disability Program and, of course, Every Australian Counts.

I would like to thank Danny Graham and Endeavour Industries at Kippa-Ring for inviting me along to their DisabiliTEA events last year. It was an honour to share in that special day as we fought together for disability reform. At Endeavour Industries, I got to meet the workers as well as members of their families who had come together to celebrate people with disabilities and the important role that carers play in our society. I would like to thank Rick, the manager, for hosting the event and for inviting me to help him present certificates commemorating significant length of service at Endeavour. It was so rewarding to see such pride in the faces of the workers who received awards and hear the aspirations of newer workers to reach the same milestones. The families who came along were just so proud, as were the staff.

To all of these groups and many more, and the individuals who have campaigned so hard for the NDIS, I say: without your advocacy on behalf of the people you support and your input to me and through the consultation process, we would not have got this far. Together we have already accomplished so much, but there is still a long way to go. I look forward to continuing my work with you to bring the NDIS to Queensland. I commend the bill to the House.