Luke Hartsuyker (Cowper, National Party, Deputy Manager of Opposition Business in the House) Share this | Hansard source

I place on record today my views on the need to provide a better deal for people with disabilities and their carers. I recently attended two events in my electorate which have focused on people with disabilities. One was a conference for a syndrome known as Rubinstein-Taybi and the other was an event to promote the need for a national disability insurance scheme. I support the need for an NDIS and I believe it is essential that all members of this House adopt a bipartisan approach to delivering a better deal for those with disabilities and for those who care for them. During the recent state election we saw Barry O'Farrell and Kristina Keneally set aside their differences and work in a bipartisan way to deliver better outcomes for people with disabilities. I would very much like to see the approach replicated at a federal level.

It is clear that despite the billions of dollars invested in the disability system each year it is not adequately supporting all the people who need assistance. The support for Australians with a disability is a frayed patchwork characterised by piecemeal programs, inconsistent eligibility criteria and a lack of coordination. Support is determined not by need but by how a disability was acquired. It depends on a number of factors such as what state you live in and whether the disability is congenital or was acquired. Most Australians assume because Australia is an advanced and wealthy nation that adequate support is provided for people with disabilities. This is a reasonable assumption but it is the wrong assumption, a fact I was reminded of when I attended two local events which I bring to the attention of the House.

As I previously noted, the first event was a conference about the Rubinstein-Taybi syndrome, which I was privileged to open in Coffs Harbour. I confess that like many others I knew nothing of Rubinstein-Taybi syndrome until a man named David Stevens came to see me in my office earlier this year. Rubinstein-Taybi syndrome is a condition characterised by short stature, moderate to severe learning disabilities, distinctive facial features, and broad thumbs and first toes. Other features of the disorder vary among affected individuals. People with this condition have an increased risk of developing non-cancerous or cancerous tumours, leukaemia and lymphoma.

David Stevens made the point to me that Rubinstein-Taybi syndrome is a condition which affects very few people and therefore is overlooked when it comes to government policy. He highlighted the government's Better Start program. Under Better Start, from 1 July this year people diagnosed with Down syndrome, cerebral palsy or fragile X syndrome now have access to funding in the new Medicare items under this initiative. This is a welcome first step, but the problem is that people with different disabilities who have similar impairments cannot access this program. Children with Rubinstein-Taybi syndrome are a classic example. To date, approximately 40 Australian children suffer from Rubinstein-Taybi and despite their impairments they simply do not qualify for the same support offered to people with similar disabilities. I believe any future reforms of disability services must be more mindful of the medical conditions which are not well known but are just as challenging as many other common disabilities.

The second event which I attended in my electorate recently involved promoting the need for an NDIS scheme. As I said previously, I support a national disability insurance scheme. Earlier this year the Productivity Commission reported:

The current disability support system is underfunded, unfair, fragmented, and inefficient …

The current system gave people with disabilities:

… little choice and no certainty of access to appropriate support.

The commission proposed a scheme to provide insurance cover for all Australians in the event of a significant disability to fund long-term, high-quality care and support. It identified the current funding shortfall of $6.3 billion and proposed giving sole responsibility to the federal government and ending the current funding split between Canberra and the states and territories. The current government has been receptive to a lot of the commission's advice and I look forward to a renewed commitment from all members of this House to fixing this broken system. We simply cannot sit back and allow the current system to collapse. We owe it to the people with disabilities and we owe it to the families and carers of those who have a disability.

And let us not forget the carers. Carers face many challenges, whether they are a parent caring for a child, a child caring for a parent or a spouse caring for a partner. Isolation, emotional stress, long hours and substantial personal sacrifice are all part of being a carer. We must always remember that an increased investment in people with disabilities is good for the welfare of our carers. They are the true unsung heroes in communities right across Australia and they deserve our support. I certainly welcome the prospect of an improved disability system that is going to provide better for both patients and carers in the developed country that Australia is today.

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