Ursula Stephens (NSW, Australian Labor Party, Shadow Parliamentary Secretary for Science and Water) Share this | Hansard source

My remarks will support Senator Nash’s comments, because the issue that I want to speak about tonight is something that is relatively hidden but is certainly growing. It is a growing and complex policy dilemma that we as legislators must address and come to terms with. I am referring to the phenomenon of the growing number of people who have survived and are living with extreme brain injury and degenerative neurological diseases. I particularly want to focus my remarks on something that I know you, Mr Acting Deputy President Hutchins, are very interested in and supportive of—that is, the circumstances of young people who are still in nursing homes. I understand from the Senate inquiry into aged care, which you chaired, Mr Acting Deputy President, that the issue of young people who are ‘parked’—for want of a better word—in nursing homes because there are simply no other resources to support them is an issue that is close to your heart.

This is an issue that we in this place have considered several times, but adequate solutions are still not there. As Senator Nash said, we have an opportunity: we have the Council of Australian Governments meeting on Friday and we have a commitment from the Prime Minister that he is going to address this issue. What we are really hoping to see out of Friday’s meeting is a genuine commitment to the needs and circumstances of these young people.

We have a lot of information that comes from the work of an organisation that has been established called Young People in Nursing Homes. Information from the Australian Institute of Health and Welfare shows that close to 339,000 Australians have suffered from an acquired brain injury. Around 160,000 of those were severely or profoundly affected and need daily support. The issue here is: what happens to those young people? Where are those people who suffer an accident or some kind of circumstances leading to a degenerative illness and end up not in our communities? They are hidden from us, and their complex care needs are hidden from us too. We have to make sure that that is not the case anymore. We have to acknowledge that there are huge issues for these people. They deserve a quality of life and a dignity of life that is not afforded them when they are parked in nursing homes full of older people, who, as it is affectionately said, are waiting in God’s waiting room or garden.

That is not an environment for young people with a severe brain injury, such as the young man whose parents I met and spoke to last week. He is living in a nursing home on the South Coast, and his dad has to travel on a 160-kilometre round trip to see him once a week. He says that his son, Rod, is making progress but deserves a chance at a decent life. Rod is able to communicate a little bit; he uses an alphabet board with a laser pen. He tells his dad every time that he does not want to be in a nursing home. But Rod’s circumstances are such that there are no options. His story is a tragic one. He fell down a stairwell, landing on his head, when he was 17. He had not quite finished the HSC. What was the future for this young man? At 17, it was all ahead of him; now, at 30—he has been in that nursing home since he was 19—he is living in an aged care facility that really cannot meet his needs. They do the best they can but, certainly, the psychological and social circumstances are not ideal for someone like him. Rod’s injuries include quadriplegia with marked spasticity. He is not able to speak. He is fed with a tube. He has short-term memory loss. He is incontinent. All this makes his life pretty miserable. It is very difficult for him to be comfortable either in bed or in a sitting position, so he needs to be turned on a regular basis.

These are the needs of a highly dependent young man whose future is bleak. His outlook is desperate, and his parents are desperate for him, just like all those parents who are desperate for other young people. I am talking about young people, up to 50 and 60 years of age, who should not be in nursing homes. They should be in facilities that are much more focused on their needs. We need to think about what resources we should be putting in place—resources and opportunities that could be announced out of the COAG meeting on Friday, resources and opportunities that could offer some options and alternatives for young people like Rod, resources and opportunities such as the model in Western Australia which saw 100 relatively young people moved out of nursing homes now being supported in housing options. Whether they live independently with support services or rely on other options, such as group homes where pooled funding resources enable them to develop a quality of life which resembles some kind of life at all, young people need options. Aged care nursing homes are not designed to care for young people and their very different needs. We all know that. Nursing homes are not funded to provide the more intensive rehabilitative, social, emotional or community access needs that are crucial to the health and wellbeing of our younger people.

We also have young people who go under the radar—people who very early in their lives, as perhaps young adults, develop neurological and degenerative diseases like multiple sclerosis, Huntington’s disease or Parkinson’s disease, which become more debilitating and mean that a person’s ability to live independently becomes much more focused and difficult as they grow older. For many of their families and carers the only option is to place them in an aged care facility. What is the impact and consequence of that outcome? We are separating families; we have mothers who cannot care for their children, so they have to be separated from their children; we have dads who become dislocated and isolated; and these young people lose that contact and family support. It is a big problem for us.

Some fantastic work has been done by the Young People in Nursing Homes National Project, coordinated by the National Alliance of Young People in Nursing Homes—which was an outcome of a conference in 2003. That national project is providing great information and support to young people who are in nursing homes and to their families. Dr Bronwyn Morkham, who is here this evening—and I am really pleased that she is here because she has been lobbying very hard all week on this issue—told me that, every day of every week, a young Australian with acquired disabilities is placed in an aged care nursing home because the accommodation and support they require does not exist.

What an awful shame to think that by 2007 that number is going to be something like 10,000 young people. What an extraordinary shame that we cannot give those people the kinds of services and support that they need. And what a shame that we cannot draw on the expertise, care and support that these families are providing for young people to actually come up with some good policy options to focus on their needs. We need to see some very smart action come out of the Council of Australian Governments on Friday. The Prime Minister is on the record as saying that he is going to address this issue. A leaked memo from the federal department suggested that the proposed funding will not stretch to all young people confined to aged care. It is a four-page memo saying that the funding will not be sufficient to move all young people to new centres and concedes that more teenagers will be moved into aged care.

At the last election, Labor committed to getting young people out of inappropriate accommodation like nursing homes. From our perspective, it is about spending health dollars effectively, not to mention quality of life and the sorts of values that we as a society should ascribe to everyone. It is quite clear that there is an appalling lack of facilities, and there is a huge expectation by the community, the parents, the carers and the young people themselves that the government is going to bite the bullet on Friday and is going to actually make some sense and some real commitment to addressing this need.