Anthony Byrne (Holt, Australian Labor Party) Share this | Hansard source

I rise to talk about a very special group of women from the Cranbourne Special Needs Support Group, which is a mothers' disability support group made up of mothers who look after their special-needs kids. Rosnia O'Neal is the convenor of the group which is made up of several other mothers including Christine McDonald, Noela Hall, Jodie Clarence and Bharti Green, who is a carer from Respite and Carelink Centre in Dandenong.

Whilst each of these mothers are eagerly awaiting the benefits that will come with the full implementation of the National Disability Insurance Scheme, the point they have wanted to make at several meetings I have had with them, one of which was attended by the member for Cranbourne, Jude Perera, was that life is pretty tough for them at the present time and has been tough for a long time. The advantage of being able to speak to these women about the difficulties they are facing is just making sure that someone hears what they have to say.

The one woman in particular I want to talk about in my limited remaining time is Jodie Clarence. Jodie has a 15-year-old daughter with cerebral palsy who is totally dependent on her for everyday living. Jodie has cared for her without respite for 15 years. In February this year, due to a lack of respite or even a holiday, Jodie asked and then begged for assistance. However, Jodie was told that emergency respite was only for emergencies, which was interesting because I think Jodie was at the point of relinquishing her child.

According to Jodie, she was 'then put through myriad places to call, but was only met with waiting list after waiting list'. Jodie went on to inform me that she made a call to the Department of Human Services in Victoria on 6 March 2012, in order to obtain some respite care. It took seven weeks for her application to be assessed, and it was not until 10 June 2012 when the application was approved. However, even after going through this process it did not mean that she got funding for respite care.

According to Jodie: 'I am now on a register where I have to wait until someone else on a package either dies or is relinquished, for a funding package to become available, or the government releases more funding. The day when this situation occurs, someone from the Department of Human Services then has the power to decide who is most needy, and who should deserve those funds.' In the meantime Jodie has applied to local services, including Windermere and the City of Casey. After another lengthy assessment period the City of Casey has at least provided Jodie with personal care for three hours a week, but the demand for council services far outweighs the supply. According to Jodie: 'I cannot simply sit and wait for the NDIS to be implemented; more funding is needed in the here and now.'

Talking about Jodie's experience I am amazed by the dedication and sacrifices that parents with special-needs kids have to make. Then there are the demands that we put upon them, and I think it is incumbent upon us to provide all the support we can. I will continue to talk about this until we get something done in the here and now.

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