Joanna Gash (Gilmore, Liberal Party) Share this | Hansard source

Having always been aware of how difficult it has been for families, I found that my awareness of those with disabilities was heightened some years ago when a new media officer joined my staff. Shawn Burns was a former newsdesk chief with WIN News. He chose to give up his job in Wollongong and move to Nowra, where the needs of Mac, his son, who has cerebral palsy, could be better served. Mac was stricken with cerebral palsy when he was just six months old following complications from a bout of the flu. Shawn's personal experiences and those of his wife, Gina, in caring for their son led them to become strong advocates for the rights of the disabled. Shawn is now the acting convener of the journalism program at the University of Wollongong. Part of his research for a master's degree was to examine the way the media broach the topic of disabilities. His observations have been extensively reported, and I suppose the best way of describing his thoughts on the matter is to quote him. I am indebted to the Illawarra Mercury for their article in October last year. This is some of what Shawn said:

"I care for my son in the same way as any father would care for his son," Burns said.

And don’t make the mistake of calling Mac "wheelchair-bound". That would really raise the hackles.

"It’s like saying someone who uses a car to get back and forth from work is 'car bound'," Burns said.

"A wheelchair is a piece of equipment that people use to access their life.

"To describe someone as ‘wheelchair-bound’ is seeing them as nothing more than this piece of equipment."

…   …   …

"I found disabled people were either seen as heroes or tragedies," Burns said.

"I think people-first language is important. There are people who have disabilities, rather than being just disabled people.

"We should see them as people first rather than as disabled first. Disability is something that people have, it's not what they are."

We like to think of ourselves as a higher-order species. We see ourselves as caring, compassionate, inclusive and charitable to others. The evidence so far belies that sentiment. The disabled have for too long occupied the fringes of our society. It is as if we did not want to be confronted with the reality of our own mortality. According to an article in the Australian in May last year:

Many parents of disabled children, carers and disabled people themselves complain that under the current arrangements they must take whatever care is offered.

Mac's mother, Gina Burns, agrees:

"The present system is very inequitable.

"It's who screams the loudest that gets things."

For the record, Gina had to give up her full-time job to care for Mac. She hopes that with the advent of a workable National Disability Insurance Scheme she can one day return to full employment.

Being disabled or caring for a disabled person should not mean you are relegated to second-class citizenship. It is a question of dignity and fairness. We pride ourselves on the slogan of a fair go, that all Australians are created equal. But when push comes to shove, the disabled have often been pushed aside. In our modern, and dare I say sophisticated, society this attitude cannot be allowed to go on. We deserve better if we are as good as we think we are, and that is why I welcome this scheme; it is long overdue.

Many of my years as an MP have been spent trying to improve services or facilities for our people in Gilmore with a disability. Gilmore has a high percentage of carers, be they parents of schoolchildren, relatives, friends or just good Samaritans, and some families have more than one child who needs care. You can only begin to imagine the strain they live under each and every day. Their dedication and personal sacrifice relieves the rest of us of the responsibility. Effectively, it is us and them. In our modern and sophisticated society, this attitude cannot be allowed to go on.

The trend has been improving, but it is a very slow process. I saw this in the special schools we have, which are now integrated with mainstream schools. This is a positive development and is producing remarkable results. One such school in Gilmore is the North Nowra Public School. It has absorbed the adjoining Havenlee Special School. Students can intermingle, and this exposure has benefitted awareness and tolerance. It also helps the disabled children by removing the disability apartheid—the segregation that was the previous model.

That is not to say that we cannot do more—and we are, through the advent of the NDIS, because this is what our disabled deserve, and we can deliver it if we really try. But, because it has raised expectations and promised so much, it has got to be made to work. There must be this caveat: the scheme must be quarantined from politics. It is an opportunity to work together for the greater good and cannot be allowed to become another tool in power machinations. We have to make this work, and that is why we in the coalition have supported a National Disability Insurance Scheme unequivocally.

The coalition has enthusiastically supported each milestone on the road to the NDIS. We supported the initial work by the Productivity Commission. We supported the $1 billion in the last budget. We supported the five launch sites. We supported the agreement between the Commonwealth and New South Wales for a full state-wide rollout after the Hunter launch. And we support this legislation. At the moment, the level of support a person with a disability receives depends on too many variables—variables like what state they live in, whether the disability is congenital or was acquired and, if acquired, whether it was in the workplace, through a motor vehicle accident or in some other context. Workers compensation and motor vehicle accident insurance provide coverage in some states.

One provision that caught my eye was the matter of those aged 65 and over. Those aged over 65 will not be eligible unless previously admitted into the scheme. You can imagine how anyone aged 65 or over must be feeling, especially if they are still in the workforce. Given that we are encouraging people not to retire when they hit 65, surely this is one area that needs to be explained.

The coalition stands ready to work with the government to see an NDIS delivered as soon as possible, because people like Shawn, Gina and Mac Burns and many other families in Gilmore deserve better, and we as a nation are in a position to give it to them. Families and carers should not be forced into having to rely on the largesse of others. That is the reason we are here debating this bill, to make sure we get it right. Both sides of the House agree, but it needs to be fair and accessible for all, with a choice of service facilities for families, not the government, to choose.

At this time, the bill establishes the framework. How effectively it works is very much a measure of our own morality as a nation. This is a chance to deliver real dignity for those who for too long have been sidelined. We believe that the NDIS, fully implemented, constitutes a new deal for the disabled and their carers. It offers hope and it offers opportunity. It is also important to note that every government in Australia and every opposition in Australia supports and wants to see an NDIS. I certainly intend to play my part in that process.

Before I conclude, I want to place on record my thanks to the many Gilmore residents who have explained to me their personal stories in an effort to get this important scheme off the ground. I speak of Gillian Dowling, a brave woman from Culburra Beach in my electorate, whose grandson developed pneumococcal meningitis, leaving him intellectually and physically disabled from a young age. There is Lindsey McCulloch, of Basin View, and her son John, who suffered from a lack of government speech pathology services, which, without outside support, could have severely limited John's development. There is Jan Harber, a single disabled pensioner of South Nowra, who is fighting hard not to fall through what are often gaping cracks in our disability support system. And then there is Josie Carter, a mobility and independence store owner of Ulladulla, and Karen Byrne of Old Erowal Bay and her brave son Kieren, who suffers from blindness and moderate deafness and has a lack of speech. Then there is Pat Horne, a brave Berry mother who, in 2007, tragically lost her 36-year-old son to MND. And I also speak of Robert Leeson, a strong disabled man from Bomaderry; Sharlene Reay of Shellharbour and her young daughter, who suffers from an autistic spectrum disorder and a moderate intellectual disability; and Susan Collings of Gerringong, a professional in the community care sector, who has seen firsthand the inefficiencies, injustice and suffering of many in the disability service sector. And there are many, many more.

A National Disability Insurance Scheme is a non-negotiable necessity, an idea whose time has come. But this is a once-in-a-generation reform that must unfold over several parliaments and likely more than one government. The NDIS must be the property of the parliament, not the reform of any particular party or political belief. The Australian federal parliament will this year legislate an NDIS—an NDIS which will ensure that every Australian, well and truly and once and for all, counts. This is a chance, as I said, to deliver real dignity for those who for far too long have been sidelined. It offers hope and opportunity. As I said, everyone in Australia, in opposition and in government, wants to see an NDIS, and I believe most Australian citizens do as well.

After 17 years in this House, I can really say now that we can achieve consensus by working as a team. We can get the policy right. We owe it to the people of Gilmore and of Australia, and we stand ready to work with government to make the NDIS a reality.

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