Joanna Gash (Gilmore, Liberal Party) Share this | Link to this | Hansard source

I rise today to talk about the gut-wrenching subject of young people with disabilities in nursing homes. I am constantly reminded of this subject by the people of Gilmore. It was refreshing and inspiring to see the Prime Minister and the premiers put health at the top of the list of issues of importance at COAG. I hope it is the start of a process that soon sees the issues of young people with disabilities in nursing homes being addressed.

We have all heard stories of young people with disabilities being placed in nursing homes because there is nowhere else for them to go—young people who are mentally sound and capable but who have a disability. But some families deal with very young people who have severe brain injuries—injuries so severe that parents do not know what the future holds. It is this uncertainty that I wish to address today.

With his knowledge, I use the example of a member of my staff. Shawn Burns, my media and policy adviser, and his wife, Gina, have a severely disabled son. Mac is almost three years old. After being born 3½ months early and weighing just 498 grams, Mac survived four months in a neonatal intensive care ward, defying the odds and overcoming more than his share of hurdles—including an operation to remove part of his bowel, when he weighed just 700 grams. As I say, he beat the odds and left the neonatal intensive care ward relatively unscathed and, for all intents and purposes, well.

Tragically, however, Mac fell ill just 10 weeks after getting home; he caught the flu. While most children catch the flu and get better, Mac’s flu almost killed him several times. His still immature lungs could not handle the pressure and subsequently put too much demand on his heart. He suffered multiple respiratory arrests. While Mac survived, his brain was starved of oxygen for too long and he suffered global brain damage. The damage left Mac with severe cerebral palsy and immeasurable cognitive disabilities.

In his father’s words, ‘He is a beautiful boy.’ Mac is, however, a living and smiling personification of a question. It is the question his parents ask themselves only when they dare look to the future: who will look after him when we are gone? Mac’s parents are far from elderly. Both are in their mid-30s, and hopefully they will grow old. There is one thing guaranteed, however: they will grow old prematurely if more is not done to assist them and those like them.

In not too many years Mac will no longer be a baby. He will be a teenager, a 20-something, a 30-something and so on. Mac will grow to be a man, a man in a disabled body and, in all probability, with severe mental disabilities. We do not want to face a situation where today’s beautiful baby boy, the topic of television stories, newspaper articles and calendar shoots, becomes the forgotten man. Mac’s parents, their families and their friends are determined to look after Mac and to do whatever it takes to give him quality of life.

Mac must never be forced into an aged care nursing home because there is nowhere else for him to go. Let it not be said that this country did not act. Do not let the fight that Mac fought as a 498-gram baby to survive and the battle he and his parents face every day be in vain. While this story is being written, there is only one way a final chapter of tragedy can be avoided. When Mac’s parents are not able or around to look after him, this country must. Facilities must be established now to cater for the needs of young people with severe disabilities. We cannot continue to put them in nursing homes, and we cannot pretend Mac’s story will be the last of its kind.

There are many more Macs in our community of Gilmore and many parents who cannot even find a respite bed for them. It is just too awful for words to describe the torment that these families go through. I thank Gina and Shawn for allowing me to present their story. It would not have been easy to admit that they must now look to the future at this early stage. Nursing homes are places where the elderly are cared for and given peace of mind. They are not places for healthy, young disabled people.

I am indebted to the Prime Minister for placing this on the agenda of COAG and assure him there are many families in Gilmore awaiting the results of that meeting. I have already had discussions with Minister Cobb on this matter, as he has the responsibility for ensuring the carriage of this with the state government. This issue is not acceptable in today’s society. As a government, we must ensure we do something about it—and soon.