Steve Irons (Swan, Liberal Party) Share this | Hansard source

I thank the member for Riverina for bringing this important matter to the attention of the House today. I note that in her speech she mentioned that all members in this place represent people with disabilities, and they all have carers, so it is an important issue for all of us in all of our electorates. According to the Raising Children Network, four per cent of Australian children aged between nought and 14 years have a disability, including chronic illness and intellectual or physical disabilities. In 2003 this equated to just under 320,000 Australian children with a reported disability. Sixty-nine per cent of these reported disabilities refer to movement, self-care, schooling or communication, and are known as core activity restrictions. Children with core activity restrictions require plenty of attention from their parents.

Sometimes the disability is lifelong and care from the family continues into adulthood. Eventually there comes a time when the parents themselves get older and are unable to continue meeting their caring demands. A combination of longer living and a general trend towards an ageing population is making this scenario more common across Australia. When this happens it can be a very difficult and emotional time for both parents and children. Mr Deputy Speaker Georganas, I know that we recently were presented with some parents who had two diabetic children. They had type 1 diabetes, and the story they told about their caring responsibilities and how they affected their family was enlightening for me, and I am sure it was for you as well. But it is important that we in this place understand the onerous task—but, I am sure, a pleasant task for many of them; it can be quite rewarding—of providing 24/7 care for many of these children.

Part of the problem is that parents are also reluctant to plan for the future as there is no certainty, making the eventual transition sudden and unpleasant during these times. Sometimes lifelong carers can make incorrect assumptions that other family members will take over the caring role. Exacerbating this is general suspicion of government provided facilities. Many lifelong carers associate government support with large-scale institutional settings. That was the norm 50 years ago, but it is not to the same degree today. This creates a culture whereby families seek help only as a last resort. This underuse ultimately leads to an overall underprovision of facilities and places the system in a cycle of decline.

With proper planning and help from the federal government we can do more to help families prepare for the transition. Back in 2005 the Howard government announced the establishment of special disability trusts to help with this planning process. Since September 2006, families have been able to establish these trusts, which attract social security means test concessions for the beneficiary and eligible contributors. The trust is effectively a planning tool, allowing families who are able to do so to make financial provision for the future care of family members with severe disabilities. Special disability trusts have made it easier for the families of children with severe disabilities to make private financial provision for the family member’s future care and accommodation needs without being affected by social security means testing.

Special disability trusts will continue to be an important part of the way forward on this issue. However, government can and should do more to help these families. We can help the transition by bringing together disability and aged-care facilities, which at the moment are too complex, fragmented and separate. In this way families can continue to live together. This is a complex task but one I am sure we can achieve.

It is important that we as members of parliament support in our electorates the children with disabilities and the parents who care for them. Often there is a knowledge gap, with members of the public not understanding and sometimes not wanting to understand another child’s disability. It is up to all of us to make the effort to better understand these issues. I support the Activ Dragonfly Week in my electorate of Swan. It shows how care services are evolving to provide opportunities for the disabled in the workforce. A great example of this is at Activ’s Kewdale branch, where employees with disabilities work packing dry ice and cutlery for use on airlines.

Once we understand, we can not only help address the specific concerns raised by parents but provide more support to the families than society currently gives them. There are a range of emotional and financial challenges for the parents of children who have a disability. Sometimes the emotional challenges are great, leading to stress, anxiety and often depression. There are also financial burdens involved. Parents may have to leave their work to become a full-time carer and there may well be additional costs involved.

There is some excellent information available on the Raising Children Network website. I shall put their link on my website for the information of my constituents. I urge the government and the opposition to continue to fight to do more for these people. (Time expired)

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