Disability and Carers

I spoke today about the hard work of carers and the campaign to create a National Disability Insurance Scheme.
Caring and Disability
3 November 2011

I rise to speak about the twin issues of caring and disability. It was my pleasure on 14 October to attend the launch of Carers Week, which was officially launched by the Minister for Mental Health and Ageing, Mark Butler. It was a moving event at Parliament House, where Carers Australia President, Tim Moore, spoke about his sister Amy. Amy has struggled with mental illness since she was 17 years old and Tim spoke about her in wonderfully moving terms, and about the fact that recently Amy had the great achievement of turning 30. With the care of her family and friends she has managed to keep her demons at bay.

Tania Hayes spoke about her husband Warren, who had an eight-centimetre brain tumour removed when they were in their early twenties. Tania spoke about sitting by his bedside in the hospital for more than 400 days. At the end of that time she was told that the option available to him would be an aged-care home. She was not willing to accept that and took him home to be cared for at home. She taught him to eat and to talk, and now the couple has a little boy, Josh.

The Parliamentary Secretary for Disabilities and Carers, Jan McLucas, also spoke, as did Carers Australia CEO, Ara Creswell. The event was one of the most poignant that I have attended in this building in my brief time in parliament. The issues of carers touch us all. I remember that when I was a whippersnapper at university tutoring a boy by the name of Jonathan Wilson-Fuller - best known as ‘the boy in the bubble’. Jonathan is now a man of 33. He lives in Baulkham Hills, in a house with a positive internal air purification system that purifies all the air in the room seven times every hour in order to keep his allergies at bay. His parents, Yvonne and Kevin Wilson-Fuller, have sacrificed their professional careers because of the love and dedication they have for Jonathan. I pay tribute to Jonathan and to his parents. I urge all members to have a look at Jonathan's terrific book Will you please listen: I have something to say.

Judy Woolstencroft came to my electorate office on 7 October. Judy is a carer for her partner, Chris, who suffers from early onset dementia. Judy and Chris came in with Ellen Skladzien, a tireless campaigner in this area, to speak with me about the challenges faced by those with early onset dementia.

I also held a National Disability Insurance Scheme roundtable in my electorate office on 7 October. I would like to thank Simon Rosenberg, Luke Jones, Bob Buckley, Kerry Bargas, Trish and Glenn Mowbray, Susan Healy, Mary Webb, Kerrie Langford, Robert Altamore, Fiona May, Eileen Jerga, Adrian Nicholls, Christina Ryan, Brooke McKail, Sally Richards and others for attending that event. It helped me better understand the issues around a National Disability Insurance Scheme and why Australian people with disabilities and their carers so much need this scheme. That was followed by a public forum at the Belconnen Community Service building on 25 October. Daniel Kyriacou from Every Australian Counts and members of the ACT Labor Party's Community Services and Social Justice committee joined a discussion about what a NDIS means and how people can work with the campaign to bring about a National Disability Insurance Scheme.

A NDIS will not be cheap and will not be straightforward but this government is committed to doing the preparatory work to see it happen. That is complicated work with the states and territories but it is vital to resolve some of these anomalies. If you become a paraplegic in a car accident, you are more likely to get looked after than if you fall off your roof while cleaning the gutters. If you are born with a disability you often receive insufficient care. These are things that many of us in this place feel uncomfortable about. We in the Gillard government are committed to bringing about a National Disability Insurance Scheme and helping those who care for their loved ones.

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Cnr Gungahlin Pl and Efkarpidis Street, Gungahlin ACT 2912 | 02 6247 4396 | [email protected] | Authorised by A. Leigh MP, Australian Labor Party (ACT Branch), Canberra.