Lindsay Tanner (Melbourne, Australian Labor Party, Shadow Minister for Finance) Share this | Link to this | Hansard source

I move:

That this House:

(1)

notes that approximately 1,000 Australians under the age of 50 are living in nursing homes because they have a severe disability such as acquired brain injury;

(2)

recognises that in most cases such accommodation is not appropriate, and that greater choice is needed for these younger people;

(3)

acknowledges that as both federal and state governments are deeply involved in the aged care sector, both levels of government have a role to play in addressing this problem;

(4)

notes that the Aged Care Innovations Pool has provided a small start to addressing the problem; and

(5)

calls on federal and state governments to use the Council of Australian Governments process, and the current Senate Community Affairs Reference Committee Inquiry, as a basis for a combined effort to deal with this serious problem.

The motion that I have moved has been on the books for quite some time. It is something of a coincidence that it has arisen in the House today, very shortly after the COAG meeting on Friday, which took some timely steps towards addressing the problem that the motion refers to.

There are somewhere in the vicinity of 1,000 or so people—that is only a rough estimate; it could well be more—under the age of 50 who are currently living in nursing homes throughout Australia, and there are many more who are older than 50 but still well below the age of the typical resident in nursing homes. Of these 1,000 or so who are under 50, typically they are suffering severe disabilities. Many suffer from acquired brain injury and very severe brain injuries. They are often in very difficult circumstances personally and in terms of the care that they require.

The problem that this motion is designed to refer to is the fact that for many of these people—in fact, probably most—accommodation in a nursing home is inappropriate. They are typically housed with a very substantial number of people who are very advanced in age, often in their 80s or even 90s, people who by definition are dying in the nursing home, and sometimes fairly quickly. I think the average length of residence in a nursing home is something like six months, because of the very nature of the illnesses and disabilities that the older people who are in nursing homes tend to suffer from. Obviously the younger people who are in nursing homes in these circumstances have very different needs and very different requirements in terms of stimulation, assistance, care, and just the general emotional and physical environment within which they are accommodated.

What we have seen—until last Friday—has been a classic example of the failure of Australia’s antiquated federal-state structures and the inability of the two levels of government to cooperatively deal with a serious and growing problem. We have had hundreds of people effectively rotting away in nursing homes—people who could be much more appropriately looked after and cared for in more suitable accommodation—because of the fact that, as far as the Commonwealth is concerned, they fall under the category of disability and therefore belong to the states as a responsibility; and because of the fact that, as far as the states are concerned, they are in nursing homes and nursing homes are essentially predominantly a responsibility of the Commonwealth.

The steps that were taken by the Commonwealth and the states on Friday I would regard as a welcome first instalment. Clearly we are not going to see an overnight solution to this issue, but the steps that have been taken, with a significant injection of additional funding, will be a welcome start. Small progress has been made up until now with things like the aged care innovations pool. The Victorian government, I note, is committed already to building a five-bed facility for young people who are currently in nursing homes. It is to be hoped that that commitment will be able to be expanded as a result of the COAG meeting.

I first became aware of the true magnitude of the issue—I knew of it as a general proposition, but I first became aware of the true difficulties involved—when I visited the Harold McCracken House nursing home in my electorate a number of years ago. That nursing home, by the way, is very soon to close because of the new requirements that are imposed on nursing homes. There I met Chris Nolan, who has become quite well known publicly as a person in this situation, a young person who tragically suffered an acquired brain injury that has left him unable to speak, communicate or look after himself. He is able to communicate to a small degree through blinking, and he does greatly appreciate music and still manages to battle against his disability. He has had a very difficult time being a resident of a nursing home. He makes friends who very shortly thereafter die. He and his family, carers and supporters have been long involved in this campaign. I commend their efforts, because it is people like them who have ultimately got this issue on the agenda nationally and got some action.

There has been a lot of publicity and a lot of rallying around people like Chris Nolan, and there have been many other examples that have been exposed in the media in my state and other states—some of them, perhaps, are people who are in an even worse position than Chris is. It is long overdue that we as a nation, the federal government and the states, show some compassion, some commitment and some commonsense, rearrange the way the federal government and states deal with these issues, get over the bureaucratic stand-off and ensure that those younger people who do suffer already extreme circumstances get treated fairly and decently. (Time expired)

Bob McMullan (Fraser, Australian Labor Party) Share this | Link to this | Hansard source

Is the motion seconded?

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Don Randall (Canning, Liberal Party) Share this | Link to this | Hansard source

I am pleased to speak on this motion today. I congratulate the member for Melbourne on bringing this motion to the House, because it is a concern to many members and senators in this government and parliament that we address the issue of young people in nursing homes. So congratulations to the member for Melbourne. Can I also say that in our party room I could not count the times that this issue has been raised with the Prime Minister: young people should just not be dumped, for want of a better term, in nursing homes because there are no other facilities for them. I would like to acknowledge the member for Riverina for her strong advocacy on this matter in our party room, other members that are present today and the member for Leichhardt, who is not here today.

To have young people with disabilities in nursing homes is an abomination; a nursing home is not a fit and proper place to have them. Even though a nursing home often has the appropriate infrastructure to offer suitable care to these people, it certainly does not address the specific case of someone with a severe disability and perhaps even some form of mental health problem also. We have heard and we are aware that currently in Australia today in aged care homes there are something like 6,500 people under the age of 65 and 1,000 people or thereabouts under the age of 50. In nursing homes in Western Australia, which is the state I come from, there are 492 people under the age of 65 and 63 people under the age of 50.

I have endeavoured to ring the nursing homes in my electorate today to find out if any of them contain young people who could be accommodated better elsewhere. These nursing homes include Dale Cottages, Fairhaven Hostel, Armadale Nursing Home, Mandurah Nursing Home, Kelmscott River Gardens Aged Care, Sarah Hardy House, Beddingfield Lodge at Pinjarrah, Waroona Frail Aged and Anglican Homes in Westfield. To my knowledge, at this stage, no young disabled persons are in nursing homes in the Canning electorate.

I also put on record that one mum, who has been a strong advocate of the Adopt a Politician Scheme in Western Australia, was here in Canberra last Thursday, hanging on to the fact that we might spend more money and commit more resources to this problem. She has a son who is severely disabled and mentally impaired. She was here to see whether COAG would come up with further resources and funding. I am pleased to say—and, as the member for Melbourne said, it may or may not be a coincidence or perhaps his motion brought this to a head—that COAG met last Friday and decided to put far more resources, many millions of dollars, into this particular arrangement.

In Western Australia—and again I will be a bit parochial—$2 million is to be placed into a specific program there and it will be matched by the state. The Western Australian disability services minister, Minister Margaret Quirk, said, ‘The federal government’s promise today of $2 million will be matched by the state.’ She went on to say, ‘The Commonwealth is to be congratulated for recognising the need and making a further inroad into combating the problem of young people living in nursing homes in WA.’

Before my time runs out, let me point out that over the last three years the Australian government has offered aged care innovative pool pilot funding for states and territories to support the transition of younger people with disabilities from aged care and state and territory funded accommodation. To date, only Victoria and South Australia have taken up this offer. So, when some of the states bleat about the fact they have not had enough funding, there is this pool and so far only two states have taken advantage of it. But let us put aside all the Commonwealth-state argy-bargy. I am pleased to say that there is an agreement and both state and federal governments are happy with the response that there is sufficient funding at this stage.

Again—believe it or not—I agree with the member for Melbourne that at the moment this matter has been somewhat addressed. Investing in disabilities et cetera is like investing in a bottomless pit: you will never have enough money to address all the wants and needs that can and will be there. However, this is a great innovation from the state and federal governments coming together and seeing that a proper response is given to young people. These young people should not be in a nursing home; they should be in a fit and proper facility that accommodates and acknowledges their real needs. (Time expired)

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

Firstly, I congratulate the member for Melbourne on bringing this motion to the parliament. I believe that many members on both sides of this House have been concerned about this issue for a very long time. I find it hard to believe that in a country like Australia we can sit back and be satisfied with letting young people with disabilities rot away in nursing homes, as has been the case.

I think no issue has created more angst than housing young people with disabilities in nursing homes; such accommodation is inappropriate for them. The member for Canning has stated that people with disabilities can get suitable care in a nursing home, but I would put very strongly that they do not get suitable care in such homes. Their physical needs are taken care of, but ‘care’ is a lot more than just making sure that a person’s incontinence aids are taken care of and that a quadriplegic is treated medically. I argue very strongly that ‘care’ means ‘appropriate care’, which also relates to quality of life.

I know that many members of this House have been approached by the families of young people with disabilities and I find that heart wrenching. Some of those families are managing to sustain caring for their children in their homes but, as they get older and sicker, that becomes harder and harder. Recently, in my electorate, the mother of a young person with a disability, whom I know, died. In the period leading up to her death, the one thing that concerned this mother more than anything was that her precious daughter—her daughter was so precious to her—would receive the necessary appropriate care after her death. Luckily, a suitable home was found for her daughter—and it is not in a nursing home. She is one of the lucky ones. I also know that nursing home staff are very concerned about the fact that these young people do not get the kind of care and stimulation that they need.

I would very much like to acknowledge that the COAG agreement last week is a very positive step forward; $24 million over five years to ease the crisis of young people in nursing homes is a good step forward. Another positive step is the fact that the states and the Commonwealth are working together. This will end the blame game. I do not think anything can be gained by federal members of parliament blaming the states and by members of the state parliaments blaming the Commonwealth. There are some things that we really need to work together on, and I believe that this can act as a model for other areas. It is a recognition that both the states and the Commonwealth have a responsibility to these young people. It is a small step, but more is needed.

I note that a report was leaked on 10 February, ahead of the COAG meeting. It commented that expectations will need to be carefully managed and public presentations will need to clearly state objectives that accurately reflect the likely outcomes of a CAP program. This leaked document goes on to say that expectations should not be raised. That is because only one out of every six young persons in a nursing home will benefit from this program.

I think we have to do better. It is the first step, but our young people who are in nursing homes certainly deserve a lot more than they have had in the past and a lot more than has already been agreed to by COAG. I have worked with people with disabilities, and I know that at certain times the only appropriate housing for young people with disabilities is in a nursing home—appropriate in terms of medical care but not in terms of the quality of life they live. (Time expired)

Margaret May (McPherson, Liberal Party) Share this | Link to this | Hansard source

There is nothing more disturbing for me as a member of parliament than to spend time with an elderly mother who has the task of caring for a disabled adult son or daughter without adequate resources or support from government or the community. Each time I meet with one of these mums or dads, the most common question asked of me is: where can my child receive the care they require when I am gone? That is a question I cannot answer, because to date there is no answer.

These cries for help are not being heard. Some of the cases I am aware of in my own electorate and within the Gold Coast city are heart-rending and desperate situations—parents who are suffering social isolation and economic hardship, parents whose own health and wellbeing are being compromised because they do not have the respite or support they need to carry out an often 24-hours-a-day, seven-days-a-week job caring for a loved one who has a severe disability such as an acquired brain injury. Time and time again families tell me that they will have to place their young son or daughter into the care of a nursing home, a totally unsuitable outcome and a decision that is devastating for the family. But, unfortunately, it is often the only decision they can make. There is no other alternative.

Nursing homes play an important role within our communities, but these facilities are designed and built for the elderly, the staff are trained to care for the elderly, the programs delivered in them are for the elderly, the services are geared for the elderly and the overall environment is geared for the needs and wants of the elderly. The needs and wants of the elderly are very different from those of younger members of the population, especially those with a disability. Many young people with a disability have a normal life expectancy, which means that under current arrangements they could live in an aged care facility for 50 years or so. This state of affairs cannot be allowed to continue. Placing young disabled Australians in facilities that were never intended to support them, without the support services they need to maintain their health and independence, is unconscionable in anyone’s language. We are an incredibly fortunate society, but if we continue to lock away young people with disabilities in nursing homes I believe that as a society we will become poorer and weaker. Younger people’s needs and wants are different from those of older people. There is clear evidence that a young disabled person locked away without the support services they need will experience a deterioration in their health and independence that will result in increased hospitalisations and added health costs.

We have an army of devoted ageing parents living in our communities without adequate support services and caring for disabled adult children. These parents are tired. The burden on these carers is high, and the stress on their marriages and the other siblings is high. As a disabled child gets beyond adolescence, they grow heavy to lift; just the physical effort of caring places enormous strain on carers. Some parents have said to me that they would just love a weekend away to have uninterrupted sleep or to have the chance to have a meal out or just an evening socialising with friends. It is not just that the disabled child lives in isolation; it is my experience with some of these families that they also live in isolation. They live in social isolation because their child cannot be left alone and, in many cases, cannot be taken out because of unacceptable social behaviour.

The National Alliance of Young People in Nursing Homes believe that the solutions are simple and straightforward. In their submission to the aged care inquiry in 2005, YPINH said that we do not need more scoping studies to establish the nature and extent of the problem. They maintain that we know the problem exists, what it encompasses and that it will get worse. There are community based supported accommodation options that are successful in bringing young disabled people out of aged care and back to living in the community. YPINH maintain that we simply need more of these options to enable young people and their families to have a choice about where they live and how they are supported.

However, extending the range of options relies on two key factors. The first is the political will to solve the problem. The second is the establishment of a dedicated funding stream that young people and their families can draw down to develop the accommodation and support services they need. It is time both levels of government stopped playing politics, accepted joint responsibility for the problem, got on with finding a coordinated and integrated solution and moved young people from aged care facilities to community based living arrangements.

That first step happened at last Friday’s COAG meeting, when state and territory governments agreed with the Prime Minister’s proposal to jointly fund and develop a $244 million program. This was a great outcome from the meeting which will hopefully reduce the number of young people with a disability living in an aged care facility. I commend the member for Melbourne and all members in this House for bringing this motion to the attention of the House and for speaking today.

Brendan O'Connor (Gorton, Australian Labor Party) Share this | Link to this | Hansard source

I rise to support the motion moved by the member for Melbourne. It is a timely motion and it anticipates the discussions held at the COAG meeting on Friday where a decision was taken to at least address in a modest way some of the concerns of families who have had to place their younger family members into care and, indeed, into what many would argue is inappropriate accommodation. As the member for McPherson just indicated, there is a concern amongst many families about the future of their young children with severe disabilities. I have certainly met with parents who have been or are the primary carer of a child or children with severe disabilities. They are concerned about what will happen after their death to their children and, in particular, to attending to their children’s needs.

The motion moved today is about addressing the concerns of people under the age of 50 who find themselves accommodated with much older recipients of care. The motion, I think quite rightly, seeks to have both federal and state authorities and governments redress this problem of inappropriate accommodation. As has been indicated by other speakers in this debate, 6,000 people aged less than 65 years are living in residential aged care. About 1,000 of these people are aged less than 50 years. So clearly there are many who should not be placed in this area of accommodation; there should be greater efforts made by federal and state governments to rectify this problem.

As a result of the new Commonwealth State Territory Disability Agreement, from July this year the Australian government and the states and territories will provide matched funding of up to $244 million to jointly establish a capped five-year program managed by the states and territories. The funding will aim to, amongst other things, provide age appropriate care for younger people with disabilities currently in residential care and reduce the overall number of people in residential aged care. The program will focus first on people aged less than 50 years in residential aged care. Other people with disabilities inappropriately accommodated in aged care will also be eligible under the program as well as people at risk of being placed inappropriately in aged care residences. Any move will be voluntary on the part of the younger person. The Australian government has responsibility for aged care services while under the Commonwealth State Territory Disability Agreement, signed by all jurisdictions, states and territories are responsible for accommodation support. The activities that will be funded include assessment of care needs for younger people with disabilities, negotiating and providing appropriate alternative long-term care options, monitoring program outcomes and sharing information between the jurisdictions.

This program announced last week is certainly an improvement upon the current arrangements. However, it is clear that it is not enough to address the systemic problems of accommodation of younger people in nursing homes. The fact is that, at best, one in six younger persons will find themselves placed in better accommodation as a result of this program. So a lot more has to be done by both federal and state governments to attend to this awful situation in which families can find themselves in having to make a decision as to whether they can continue to care or be the primary carer for their children with severe disabilities on the one hand and whether they can trust the accommodation that is currently provided and available to those younger people with severe disabilities on the other. It is a difficult dilemma and one that would be removed if governments at both federal and state levels collaborated properly and attended to those deficiencies in the current accommodation arrangements. (Time expired)

Kay Hull (Riverina, National Party) Share this | Link to this | Hansard source

I rise to support this private member’s motion today. I congratulate the member for Melbourne for putting it up, and I also thank the member for Canning for acknowledging my ongoing contribution to trying to resolve this issue within our party rooms. When I was first elected seven years ago there was a young lady who was most distressed because her husband had a serious acquired brain injury and was in a nursing home. She was divorced or separated from that gentleman and she was unable to care for him because of the difficulties his injury had inflicted. She came to me needing some sort of assistance because the nursing home had decided that he had to come home. She had two little children. There was no way she could cope with what was going to be required on a 24-hour, seven days a week basis. It was then that I felt absolutely helpless and hopeless because I had no answers for her. There was nowhere for her former husband to go other than into a nursing home. She had enormous guilt as well about this issue.

I have been commenting on this, trying to get it resolved and working with various ministers ever since to try to get some sort of answer. As our advanced technology saves lives that maybe would not have been saved many years ago due to the lack of technology, we are now finding ourselves with an ever-burgeoning problem for families and those afflicted with illness and also acquired brain injury syndrome. This is not going to go away; it is just going to get bigger and bigger. As our technology advances, we are saving lives—that is fantastic—but we also have some very critical care needs as a result. So we as a nation have to take responsibility. It is not a state issue and it is not a federal issue; it is an Australian issue. It is an issue for all Australian people.

We now have around 100 people under 60 in nursing homes with multiple sclerosis. They may have really well-tuned, snappy, sharp minds and are alert, but their bodies have unfortunately been inflicted with multiple sclerosis. Families are unable to care for their needs on a 24-hour basis due to work and family requirements and they find that there is nowhere for them to go. There are another 300 or so at risk of entering nursing homes on any given day because of the lack of support services. It is predicted that there will be around 10,000 young people in nursing homes by 2007 if the current rate of entry is maintained.

So there is a definite need for collaboration between the states and the Commonwealth, but it has to be meaningful—we have to have actual answers. There is a critical need for co-location of facilities. At the moment there are many. It is quite appropriate that the services that are provided in an aged-care facility might be extended to those young people in nursing homes, but they should be in a stand-alone facility.

Aged-care providers should have a pool of funding that they can apply for to build stand-alone facilities, but they should be able to co-locate those to utilise the medical supervision that is required for some young people in nursing homes. In that way we can adequately cope with a reducing workforce. But those stand-alone facilities should have separate entries and separate rehab and care programs that are specifically designed for young people and that are geared towards assisting them into supported accommodation programs. We must urgently provide accommodation options. Working as a team with the states is imperative. (Time expired)

Bob McMullan (Fraser, Australian Labor Party) Share this | Link to this | Hansard source

Order! The time allotted for this debate has expired. The debate is adjourned. The resumption of the debate will be made an order of the day for the next sitting. If the member for Riverina wishes to continue speaking when the debate is resumed, she will have leave to do so.