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Tuesday, 12 March 2013
Page: 1585

Mr MATHESON (Macarthur) (12:05): Today I rise to speak on the National Disability Insurance Scheme Bill 2012 and the positive benefits it will have for the people of Macarthur. I believe this is one of the most important pieces of legislation that has ever been and that ever will be spoken about in this parliament.

Since becoming the member for Macarthur I have fought hard to support the charity groups and organisations in my electorate who support those living with a disability and their families. These families should have access to the funding and support services they need to ensure the best quality of life possible for their loved ones. The NDIS will provide this much-needed support by providing the funding and support services they need. We hope this will in turn help them join the workforce and become active members of our communities.

The NDIS will empower individuals and reduce red tape for people living with a disability and their carers. It will provide funding to individuals and organisations to help people with a disability participate more fully in our communities through things like aids, equipment, supported accommodation and personal care. It is my strong belief that the financial support and assistance for these people living with a disability should not be the responsibility of the parents and carers, who already provide hands-on support to their loved ones 24 hours a day, seven days a week.

The added pressure of fundraising for equipment and fighting for more services and financial support should not be left to these families who have so much on their plates already. The sad truth is that the lack of funding and support can put even more pressure and stress on these families and sometimes pull them apart. The NDIS will provide funding in the form of individual support packages for people living with a disability and the possibility of some block funding for different groups or organisations to support these Australians and their families. In my electorate the cracks are definitely showing. It is very obvious that our current system of support for people living with a disability in this country is not working. In Macarthur, people living with a disability and their families are relying heavily on the support of several charities, community groups and organisations who work hard to continually raise money to provide this vital support.

Many times in this place I have mentioned these groups and the fantastic work they do in my community to help those in need. These include KU Starting Points, an educational support organisation that offers a range of early intervention programs for children with disabilities and their families; the Right Start Foundation, a group of local parents who raise money and awareness to provide support for local families living with Down syndrome; the Kids of Macarthur Health Foundation, an organisation dedicated to improving health care for every child living in Macarthur by raising money and advocating for children's health services and research across the region; Society 389, an organisation that provides financial support and assistance for families of children with disabilities and special needs; Macarthur Disability Services, a not-for-profit organisation that provides support for people living with a disability, people with a mental illness, the aged, families and carers in the Macarthur region; Macarthur Temporary Family Care, an organisation that provides support and high-quality care programs for children of families in crisis and respite care for children and adults who have a physical or intellectual disability; NOVA Employment, offering specialist job-seeking assistance and post-placement support for people living with a disability; and Northcott Disability Services, one of New South Wales's leading service providers for people living with a disability, providing support and services direct to their clients as well as carers and family members.

All of these groups provide vital support to residents in my community and rely heavily on community fundraisers, state and federal government grants and hardworking volunteers to do the great work they do in my electorate. Many of these groups have played an active role in the Every Australian Counts campaign to raise awareness of the NDIS in Macarthur. I have attended many of these events and heard firsthand from those families who believe the NDIS would have a huge impact on their lives. While speaking about these groups in parliament I have also shared the stories of many children and families in my electorate who have relied on their support. One of these children was Brittney McKenna, who was born with the heartbreaking disease spinal muscular atrophy. Sadly, Brittney passed away in 2008 at just nine years of age. When I met with Brittney's parents last year they mentioned the lack of funding and respite for families living with SMA and the added stress this caused to their family. There was limited support offered to Brittney's family and no respite because she was classified as 'too high medical support'. Brittney's mum was proficient in all her medical needs including her IV medications. In between all the years spent in hospital, the 41 surgeries and the 24-hour intensive care for their daughter, Debbie and Andrew also had to do their own fundraising for equipment and home modifications to support Brittney. They told me that life by the hospital bed included a constant struggle with red tape, bureaucracy, budgets and politics in an attempt to get some support. My hope for the NDIS is that no family in Macarthur or anywhere else in Australia should ever have to experience what this family went through whilst trying to care for a sick child. Brittney's longest single admission in hospital was 21 months. Her dad, Andrew, was working interstate to support the family financially and her mum, Debbie, was by her hospital bed 24 hours a day. Their son Liam was passed around family and friends to give him some stability and routine. With the help of the community the family raised hundreds of thousands of dollars to give Brittney the life she deserved. It is no wonder they were left financially, physically and emotionally exhausted.

In recent years I have become very close to many families in my electorate who love and support someone with a disability. That is why this issue is very close to my heart. It is no secret that I am a big supporter of the Right Start Foundation, a charity group that supports local families living with Down syndrome. The foundation was started by a group of mums who have children living with Down syndrome. These women continually fight for funding and support and are now raising money to establish Australia's first Down syndrome specific centre in Macarthur to ensure children and families receive all the therapy and support they need for the right start in life. These parents really are an inspirational group of people. Not only do they provide so much love and support for their own children; they work hard to raise awareness and to fundraise to support others living with Down syndrome. My hope is that the NDIS will give these children the support they deserve and greater opportunities to support themselves as they grow older.

Another reason the NDIS is very close to my heart is that one of my very own staff members has a son with a disability. Ben Upfill was born with one of the most severe forms of Angelman syndrome, a rare neurogenetic disorder which causes severe intellectual disability, speech impediment, sleep disturbance, unstable jerky movements of the limbs and seizures. Ben's Mum, Carla, his dad, Dave, and siblings, Joel and Olivia, give Ben all the love and support they can as a family to make sure he has the best quality of life possible. Unless you have a child with a severe disability it is hard to imagine what it is like to provide such intensive care to a child at home whilst working to pay the bills and provide for your disabled child and the rest of your family. Just a few years ago the Macarthur charity Society 389 could see the family was in need of a new car to help them transport Ben in his wheelchair. Through a charity night more than $45,000 was raised to buy the family a car to make life a little easier for them.

My point is that families, like this one, who are caring for a child with a disability, are very lucky to have the support of many charities made up of volunteers to help them raise money to support their children. For some the support of these charities is a godsend, because without them these families would be forced to make a choice between supporting their disabled child and paying the bills and putting food on the table. Unfortunately the resources of these charities and organisations can become quite stretched, with so many people in my community needing their support. That is why the National Disability Insurance Scheme is so important and why it is so important that we get it right.

We need a new system of support based on need. The person living with the disability and their family or carers need to be at the centre of the scheme and in charge, able to choose the support, aid, equipment, and service providers of their choice. This is the vision of the National Disability Insurance Scheme which I wholeheartedly support. The coalition supports the National Disability Insurance Scheme because we know that the current system of support for Australians living with a disability is not working. This is why the concept of the NDIS has gained momentum over the past five years. In my own electorate, groups like Macarthur Disability Services, Northcott Disability Services, Macarthur District Temporary Family Care, Campbelltown, Camden and Wollondilly councils, Sunnyfield Independence, the Macarthur Disability Network and Macarthur Diversity Services have all worked together to raise public awareness about the importance of the scheme and show Macarthur's support for its successful implementation.

In October last year I attended the Macarthur NDIS Big DisabiliTEA to hear from these groups and show my support for the NDIS. It was a great day with many families from across my electorate there to share their stories and show their support. Events like this one are very important. Not only did it raise awareness for the scheme but it was to me like a cry for help from these Macarthur families who love their children so much and want to see them given the support they need now and into the future. So many of the parents I spoke to fear what will happen to their children once mum and dad are no longer around to look after them. Yes, many of them have siblings who love them and will take on the role of carer when it is their turn, but it is important that these siblings are given the support they need to carry on this role.

I believe that the NDIS will give many parents peace of mind that even when they are no longer around to provide for their children the Australian government will ensure they have access to the support services and funding they need. And of course it is not just Macarthur residents who will benefit from the scheme. It is estimated that 7,500 young Australians who require full-time care are currently living in aged-care facilities and more than 700,000 young Australians are being cared for at home by their loved ones.

There are so many young people and so many Australian families who need our help. It is our job to make sure that they do not slip through the cracks. Perfecting the NDIS gives us an opportunity to do just that. This is why the coalition has supported the initial work by the Productivity Commission, which confirmed that our current system of support simply is not good enough. We support the National Disability Insurance Scheme and believe it requires bipartisan support from both sides of government.

While we supported the $1 billion promised in last year's budget, it was disappointing that this figure fell short of what the Productivity Commission estimated would be needed in the first four years of the scheme by $3 billion. I would hope to see the Treasurer account for this shortfall in his coming budget. The coalition has also supported the five launch sites for the NDIS and the agreement between the Commonwealth and the New South Wales governments for a full statewide rollout after the launch in the Hunter.

We believe that the NDIS can be delivered within the time frame recommended by the Productivity Commission by a sensible government that manages it well. We are ready to work with the government to see an NDIS delivered as soon as possible and we believe that we must get this right the first time around, with a very high level of consultation and attention to the detail from now until its full implementation.

So far we have heard very little in regard to how each individual will be assessed and who will be eligible for the scheme. I would like to know if the NDIS is going to extend to those who might look healthy from the outside but are struggling with a terminal illness. For example, in Macarthur there are more than 80 people living with cystic fibrosis, a genetic condition that effects more than 3,000 people in Australia. The condition is life threatening, and daily physio treatment, regular hospital stays and life-threatening lung infections can limit a person suffering from CF and their carers from leading a full and productive life.

Cystic Fibrosis Australia has put forward a submission to the Senate Community Affairs Legislation Committee in regard to the NDIS. In the submission the organisation has asked that the NDIS framework include people living with cystic fibrosis. It has asked that the scheme provide the full range of equipment used by people with CF, including parts and servicing for nebulisers, oxygen saturation machines, mouthpieces and inhalers. They would also like to see the inclusion of non-PBS medicines, both dietary and other supplements, as well as travel and accommodation allowances to attend specialist clinics. The submission pushes for a needs assessment and support service for carers and the inclusion of preventative services such as exercise programs and equipment for CF sufferers. These are just some of the things needed by people living with cystic fibrosis that could be provided under the NDIS.

I am also concerned about the eligibility for residents in my electorate who are over 65 years of age. Will they be eligible to benefit from the NDIS? There are many unanswered questions that must be worked through properly. This is why the coalition has called for the establishment of a joint parliamentary committee to be chaired by both sides of politics to oversee the establishment and implementation of the NDIS. This would lock in all parties and allow us to work through the design and eligibility together.

I find it disappointing that the government has knocked back the coalition's call for bipartisanship on so many occasions. I believe that the implementation of the NDIS should be placed above politics. I think that this is a time when we must come together to ensure that we get it right for all people living with a disability in our electorates. There is no reason for one side of politics to take on such an important piece of legislation on its own.

I believe that if we work together we can implement one of the best disability policies in the world, one that ensures no person living with a disability falls through the cracks. If the scheme is to succeed it will need the support of all levels of government in all states and territories across this country. If it is well-implemented, the scheme will ensure people with a disability have the support they need today and into the future.

I spend a lot of time with families in my electorate who have children living with a disability. I am continuously inspired by their positive attitude and their dedication to breaking down barriers and raising awareness of their child's condition. But no matter how amazing the parent or the child might be, raising a child with additional needs can be extremely challenging and isolating. That is why I believe that it is imperative that we work together on this one, because I want nothing more than the best for my community and those Macarthur families who will benefit from this scheme. I wholeheartedly support a National Disability Insurance Scheme for the people of Macarthur and the people of Australia. I hope that as a parliament we can work together to ensure the scheme is rolled out as effectively and as soon as possible.