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Thursday, 14 February 2013
Page: 1439


Mr LAMING (Bowman) (13:05): It is self-evident that there is strong support for a new disability scheme in this country. It is probably not as obvious to many observers that we are still a long way away from making it happen, despite the strong support at all levels of government.

I cannot use my time any better today than to tell the stories of Tina, Louisa, Karen and Kimberley, who live in my community, and the struggle they have had up until this time. I do not think I would add much to the debate by talking about the Productivity Commission's findings, except to say that it was a masterly understatement when they said, 'The additional investment of $6.5 billion simply reflects just how bad the current system is'. I would like to emphasise the unexpected nature of a catastrophic event that can lead to lifetime disability. I would like to tell Tina's story and read it into Hansard.

Tina's daughter is Ava and she is just five years old, turning six in May. She is in grade 1 at our local special school. She developed completely normally as an 18-month-old little girl, until suddenly her milestones reversed: her skills started to leave her; she began having seizures; she lost the ability to walk, which she had just learnt six months before; she could no longer swallow and suddenly therefore failed to thrive. She lost all hand function and lost all her speech. She was diagnosed then with Rett syndrome, a completely sporadic X-chromosomal mutation that happens about once in every 10,000 times.

For this family the challenge is simply to keep their daughter walking, eating and still being able to communicate without being able to use her hands. They rely on eye-gaze technique, even though those devices are so expensive and are not covered under the current scheme. They do have some help with the autism package but there is virtually no flexibility within it. The limited physiotherapy has been excluded until recently for little girls with Rett syndrome. The family dreams of a day when they can direct their spending to things for Ava like horse-riding, hydrotherapy, music therapy or even dance for kids with special needs, but up until now that has simply not been possible. And that is because a funding body decides these things—where the money can be spent and how it is used. And at the age of seven it is arbitrarily lost all together. So there is a race in the next 18 months to access as many services as possible to set Ava up as well as they can before she falls into the black hole of having no support at all.

The experience for Tina's family is that, if you are not literally begging and desperate and beyond coping, then you do not get the assistance. It sets up a curious world where families actually have to exaggerate the problems just in the hope of funding, and a situation where families with a disabled member look to each other and wonder whether they are gaming the system or behaving in a way that makes their case more compelling to disability services, and that takes away the sense of consistency and fairness.

A great example was when Tina had her second child and, after eight months of virtually no sleep with the second baby and trying to also look after Ava, she was at the end of her rope and contacted a Commonwealth Respite Carelink centre for some support. They said, 'I am sorry; we can only give you emergency support, and you are not eligible'. She was then told that if they really wanted it they would have to find $500 a week, money that they simply could not budget for. Eventually, in what seemed like a negotiation, they were offered some support, if they would contribute at least $20 a week. Tina said yes, even though they did not have that money. The person who was sent, while well-meaning enough, was so large that she could not get up and down out of the couch; she was not able to help Ava at all; and she would not pick up the crying baby because, she said: 'That's not part of the package. It's not the baby that has the disability.'

It is not the best $20 that this family ever spent. They would love to see a support system that offered more flexibility to allow parents to direct that money where they thought that it could get the most value and support for their individual circumstances. To give an example of how hard it is to find $20 a week, this family faces a bill of $7,500 for a paediatric stroller, $3,000 for a paediatric bath, $4,500 for a special needs bike so there can be some exercise for Ava and, of course, just under $3,000 for a special support chair for feeding and eating, with no help towards those expenses.

We have heard enough in this chamber about the system that we have at the moment. Let us be honest: the political will was not there for decades. It has been a perennial fight between Commonwealth and state governments, and it is these families that we left in the dark and without the assistance they deserve. We know state governments could never handle this on their own, but we chose to leave it like that for a long time. So I speak to the 969 carer payment recipients in my community and the 3,176 individuals who get a carer allowance: our commitment here is that we will not leave you alone and that together we can craft a better system, but there is a long way to go.

That need for flexibility is one that I heard over and over again. Karen Howe, who lives in Cleveland, asked me to read her story into the parliament's Hansard. Her son is eight. His name is Dylan and he has Williams syndrome, a rare genetic disorder that causes global developmental delay. He is non-verbal and completely dependent on his parents to dress him, to toilet him and even to maintain his communication and emotional needs. He suffers from hyperacusis, meaning he cannot even attend large groups like a party or a circus with other kids his own age because he decompensates. His parents have been unable to offer all the services that they know, see and feel would make such a difference. That lack of support means that they cannot have speech therapy or OT and that they have to do that themselves and to rely on a teacher and a teacher's aide, who do not have the training to do that kind of thing. It is virtually impossible, as they see it, for Dylan to be able to maintain his dignity and to fit into society.

These stories exist the nation over, as was emphasised by the previous speaker. But the reality is that even I, having worked in the health system, was never exposed to this. I worked in a clinic with people rolling in and rolling out, and I had to tell every 20th person that their vision could not be saved and there was no treatment for it. That was a half-hour conversation, but I left those people to return home to their own family members, have those quiet conversations at home with those that they loved and lie in bed at night and wonder what their future was. That happened over and over again, but as clinicians we are only touched very peripherally and ephemerally by those experiences. The great benefit of this debate is that I think almost everyone in this chamber now, thanks to the NDIS campaign, has had a real, genuine one-to-one experience, even if it was only for a short period of time with people struggling with these challenges of disability.

What I think has not been mentioned enough in this debate when we look at the large figures is that there are significant economic benefits to instituting a system that is way more responsive and liberates those around a person with disability to participate fully and even allows someone with a milder disability to be part of the real economy. Kimberly Ali is a businesswoman and she lives in my electorate. She and her husband, Marco, have had to give up at least one job to look after their beautiful six-year-old son, who has autism. She has dedicated her time to basically endless trips to therapists and trying to broker a path that is best for her son through a completely fractured system. Her husband has had to let go of full-time staff in order to pay himself enough to cover their son's therapies, which are roughly $200 to $500 a week. Imagine trying to find that kind of money. Marco leaves for work at 6 am and returns at 6 pm six days a week, just trying to keep their small business running. They have obviously had to have conversations about how they can find the extra money that their son needs. In saying that, they describe themselves as the lucky ones. Their son never goes without. They have done everything they can to make sure that he gets a really experienced speech therapist. But it is a sad state of affairs, because they know of kids just like their own whose families simply cannot do it because they cannot find the money.

Evidence shows that ongoing intervention in autism is effective and early intervention is doubly effective. We need to be intervening way before the educational and social deficits compound into people that are way more reliant on social services in the future. Groups like AEIOU will say that intensive intervention with a whole range of kids living with autism increases their odds of making it and getting through mainstream education from 30 per cent likelihood to 80 per cent. It is a fantastic intervention. It is a credit to the former Prime Minister that he initiated a range of autism packages which, again, were not available until 2008.

Now, I hope I have made the case that, no matter how financially responsible you are, there is no way to prepare for such a catastrophic event. The reality is that in those cases it is almost irrefutable that we need a social system that will compensate. I think it is a smart feature of the design of the proposed system that we divide up catastrophic injuries so that acquired injuries are looked after by the state in an NIIS that will cost around $835 million, with 1,000 new entrants, per year. By 2018, about 30,000 people will be cared for under that state scheme, which will be primarily funded by the insurance premiums that are already being paid. This covers people who suffer a traumatic accident—be it at home or in the workplace or simply in a public place—a motor vehicle accident or the result of some form of criminal action. All of these people should be covered. What side of the street you live on in Tweed Heads should not affect whether you can access the no-fault care and support scheme that exists in New South Wales or, if you happen to be on the other side of the street and you are a Queenslander, no scheme at all. It should not be that, because you live in Western Australia, 85 per cent of care package applications are refused. What an extraordinary number.

Looking at the Shut out report from 2009, we know that people who are disabled are more likely not to complete school and not to be in the workforce. We know that they are more reliant on public housing. They will not have access to decent transport, respite, personal services or emergency care or be given a hand with coordinating the services they need or even access to a guide dog or other therapies.

But one figure that I think we need to remember—one number that one should take home from this long series of valuable and enlightening speeches—is this: in a nation where we take mental health so seriously now at both levels of government, we need to remember that a person living with a disability has up to a 50 per cent chance of also living with depression. That is a far distant number from the six per cent of the rest of us. Furthermore, if you have a disability, you have a 25 to 30 per cent chance of living on or below the poverty line. That is a long way from the 10 per cent odds that the rest of us face.

Structuring a system, of course, is going to have large amounts of money attached to it. I want to give recognition to Queensland. A year ago today Queensland was the lowest investor in disability support services per head of population of all the jurisdictions. On 12 December last year, an important announcement was made by the Treasurer and the Premier, Campbell Newman: Queensland committed to reaching the average spend around the nation. They should be commended for that. This was the largest increase in disability expenditure in Australia's history. They took the existing $979 million a year of special disability support services, plus the $200 million a year for associated services, and promised to boost it to $1.77 billion by 2018. It was a courageous step. It is nearly a 50 per cent increase in real terms. Not only that—often you see the trickery around numbers—but they committed to a 4.5 per cent annual increase, which covers both CPI and the significant population growth that we have in Queensland. So credit goes to Queensland, who have already established the Your Life Your Choice program under the Minister for Communities, Child Safety and Disability Services, for having already begun this process of unfettering service provision and for giving those with disability more choice.

I also want to mention, in conclusion, the story of Louisa. Louisa has a daughter, Gaby, who is 16 years old. I would like people to contemplate the lifetime challenges around disability. They are not always issues with young children we might be seeing at special schools. There is that other significant transition wherein a 16- or 17-year-old leaves those services that are provided through public education and has to fend for themselves as an adult. Gaby has Asperger's disease, ADHD and behavioural issues. This makes her at times aggressive, and there are development delays and learning issues, which makes socialising really, really difficult. Gaby gets three hours of support a fortnight for her disability. In this country, we have nothing like the impressive schools of support that we see in places like North Carolina in the US. There is nothing like that in this country at this stage. Louisa's hope is that a new scheme could start to facilitate schools that provide intensive support for kids like Gaby. Her great fear is that she may not be able to continue caring for her daughter after she has turned 18. Will she be able to live in assisted housing? That is a massive concern for Louisa.

A lot of people blame people like Louisa. They say: 'You could have parented differently. You could have got more help earlier.' That leads, as she describes, to tremendous guilt, and it makes her at times feel both alone and incredibly abandoned.

My message to Kimberly, Louisa, Karen and Tina is: we in this place will do everything that we can to craft a better system. It is a very solemn pledge. It is one that has not yet been made after decades and decades of waiting. We are sorry that it has taken that long to come to this point. Many of us at a personal level in this place came with very different experiences of how the system works, but I am confident to say today that there is a determination, a will and a resolution here to do whatever we can to improve the system and to remove that invisible deprivation—to take away the feeling that you have of being trapped and isolated, to return families out there, wherever we can, to real and genuine economic and social participation, and to welcome you all back to the privileges that this nation offers able-bodied families.