Melissa Parke (Fremantle, Australian Labor Party) Share this | Link to this | Hansard source

I want to take this opportunity to speak about the reality of living with disability and about the opportunities that exist for policy reform in this area. I am proud to be part of a government that has broken new ground when it comes to disability support and education and in undertaking the long-term analysis and planning needed for further reform. No reform question is bigger in that respect than the need for a new comprehensive model of disability care and support, which I will come to in a minute.

In 2008 the government ratified the United Nations Convention on the Rights of Persons with Disabilities. This has given impetus to the reform task in Australia and helped focus the job before us. As the National Disability and Carers Alliance has pointed out in its submission to the current Productivity Commission inquiry:

While it is clearly not the only factor to be considered, it is important to acknowledge that rights can remain elusive if adequate resources are not provided.

Providing better support for people with disability and their families is essential if, in Australia, we hold to the principle that disadvantage and discrimination should be fought at every turn. To deliver on that principle, we must ensure that there is both an effective model and adequate resources. It is a difficult challenge.

Today I want to mention some of the people in my electorate who are living with disability but who are also, remarkably, working to advocate for better approaches to disability support. Lesley Murphy is an example—and I have spoken before about Lesley and her son, Conor, who suffers from Duchenne muscular dystrophy. In addition to the incredible commitment of Lesley and her husband, Maurice, to Conor, Lesley has worked hard to argue for more and better research into Duchenne's. The newly established National Duchenne Muscular Dystrophy Registry is a key part of delivering on that need, and I pay tribute to Lesley for being one of the people who has worked to make this real.

Ray and Wendy Walter and their son Glen are an example. Glen is now a constituent of mine because Ray and Wendy have purchased a flat for him in my electorate. Over the last several years, the Walters have been a critical part of pushing for the creation of the disability support trust, a mechanism that allows parents to provide for a disabled child through the purchase of a house or unit without jeopardising their support payments. I pay tribute to Ray and Wendy, and I say welcome to Glen, who is a lovely man.

Chloe Corfield is an example. It is my privilege to have been chosen by Chloe and her family through the adopt-a-politician scheme in WA. I have spoken before about how much I have learned from and how much I have been inspired by Chloe, who has Rett syndrome and epilepsy and about the efforts of her family to ensure she has as full and happy a life as possible.

Last Thursday, I visited the Guilfoile family in my electorate, because Julie Guilfoile asked if I would come to see the way that she and her husband Jim and their other teenage children care for their 15-year-old son, Eamon, who has spastic quadriplegic cerebral palsy. Julie and Jim wanted me to understand the financial and support service factors that recently forced them to make the heart-rending decision to move Eamon to a group residential care facility. I think everyone in Australia would understand how the Guilfoiles would look to the introduction of something like an NDIS as the means by which they could bring Eamon back home. That is what they want more than anything, it is what Eamon wants, and it is not hard to see that this would constitute a better care environment and a better life for their son.

In the May budget, as part of our core belief that a strong economy should be the springboard for fairness and reform, the government committed $147 million to early intervention disability services for children and $200 million for students with a disability. I welcome these funded measures, just as I welcome the government's decision to ask the Productivity Commission to report on the question of a national disability insurance scheme. When I recently met with a number of people, including both carers and clients, from Mosaic Community Care, a multidisciplinary service provider, they made it clear to me that an NDIS had the potential to transform disability policy and funding.

The driving concept behind the NDIS as a model is to provide more resources for disability services and support and to address the current systemic shortcomings on a financially sustainable basis. These short­comings include insufficient resources; service gaps; inconsistency; lack of control and involvement for people with disability and their families; inappropriate models of care, especially in relation to age specific needs; a lack of coordination; and, sadly, a great deal of uncertainty when it comes to the future.

It has to be acknowledged that no new national disability scheme is likely to dispense with all these problems to their full extent or in quick time because they are, in many respects, difficult and complicated. If we do not admit this, we may be setting unreasonable expectations, but that does not mean we cannot take on this challenge. We must take it on. I look forward to the Productivity Commission's report and its recommendations as the next step in this essential reform process.