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

I move:

That this House:

(1)

note that:

(a)

ageing parents and carers of disabled children face a crisis of lack of accommodation options for disabled children;

(b)

any ageing parents and carers of disabled children are in need of aged care accommodation for themselves;

(c)

due to limited available accommodation options for disabled people, many aged carers of disabled people are significantly disadvantaged;

(d)

there is an urgent need to assist ageing parents and carers of disabled children to access quality accommodation and care for disabled people;

(e)

in October 2005 the Prime Minister announced a $200 million package to assist parents to establish private trusts for the future care of their disabled children; and

(f)

there is an expert advisory group established to advise on the implementation of the package; and

(2)

call on:

(a)

the Minister to instruct the advisory group to consult widely on the merits of establishing a new financial and insurance product that would assist all parents of disabled children to plan for their future care; and

(b)

both the State and Federal Governments to work together to urgently resolve this accommodation and care crisis.

I move this motion to again raise the plight of ageing carers of disabled children. In 2004, Kurrajong Waratah in my electorate conducted some research and a report was written. The results of the research indicate that there are many families suffering a crisis in care which would worsen in the next 10 years if planning and action were not to occur to better meet the needs of disabled people and their ageing parents and family carers. This study of carers by Kurrajong Waratah found that most parents with disabled sons or daughters have been in a caring role for the whole period of their children’s lives. Their period as carers is directly equated to the age of their sons or daughters. Many have been caring for over 50 years. The disability and aged care and community care sectors recognised within this report would be unable to take flexible, responsive and appropriate action to prevent a care crisis without the necessary cross-sector policies, procedures and funding to meet the changing needs of people with a longstanding disability who are ageing and their ageing carers.

This report made a number of recommendations. One was that case management be made available for families to help them with the task of futures planning and to provide advocacy and mentoring. Another was that there be increased flexible respite services, including in-home and out-of-home options when families and carers need them and for longer periods as required. A further recommendation was that forward planning be made available for sufficient accommodation places and/or support to meet the needs of all ageing people with a disability who require such a placement.

Further, the report recommended that the disability sector be funded and policies be put in place to allow for an increase in the number of older people with a longstanding disability who will need to access funded accommodation services for the first time in old age due to a loss of primary carers or an inability of primary carers to continue in their role due to their age. The report also indicated an immediate need for government funding for out-of-home respite to enable disability services to provide respite care for ageing people with a disability in group homes. Out-of-home respite will not only enable older parents and family carers to receive a break from caring but also enable these carers to remain in their family home for this break.

But above and beyond all those recommendations is the need for Commonwealth and state governments to urgently respond to and resolve the crisis of the shortage of suitable accommodation for disabled children of ageing carers. This suitable accommodation should not be in an aged care facility. Many carers in this crisis have no peace of mind and, as I have said before time and time again in this House, there are no answers for these people in life and there are certainly no answers for them in death.

The second part of my private members’ business motion is the desperate need to initiate a research proposal to explore the development in Australia of welfare syndicate structures for the sustainable financing of care for welfare dependent groups focusing on young people with lifelong disabilities. Australia lacks a reliable mechanism to effectively leverage private and community finances for welfare support. Mostly, people look to governments to provide welfare funds. Where such public funds are not available, the burden of all care generally falls to individual families or carers. Welfare syndicates could have a widespread application in Australian society. Not only could they encourage citizens to work cooperatively to meet agreed community needs through their own resources but they could dramatically change the demand for and the shape of recurrent direct public funding of welfare services. They also have the potential to improve the way people think about welfare, responsibility, relationships and accountability.

One ready application of a welfare syndicate concept is in family and community care of our disabled young people. There is an urgent need to find sustainable and affordable ways for local communities to care for those of their number who are disabled, particularly young people whose care requirements will continue beyond care by their families for decades into the future. I urge the House to recognise the plight of ageing carers of disabled children—those who are currently aged and those who will become aged in the future. (Time expired)

Ian Causley (Page, Deputy-Speaker) Share this | Link to this | Hansard source

Is the motion seconded?

Kay Elson (Forde, Liberal Party) Share this | Link to this | Hansard source

I second the motion and reserve my right to speak.

Ms Catherine King (Ballarat, Australian Labor Party, Shadow Parliamentary Secretary for Treasury) Share this | Link to this | Hansard source

People with disabilities often lack a voice in this parliament, let alone in the wider community, and I congratulate the member for Riverina on bringing this motion to the House and highlighting the difficulties people with disabilities have in accessing appropriate and affordable accommodation options. While the motion canvasses the broad issue of accommodation for people with disabilities, I want to again highlight the plight of young people in nursing homes. There are many heart-wrenching stories that underline the plight of young people in aged care facilities, and I want to mention two that I have previously discussed in the House.

Vicki Smith, after suffering a tragic car accident, has been in a nursing home since she was 17. She finds that she cannot play the music that she wants to play; she cannot have friends over; she cannot do the sorts of things that a young woman of 32 is normally able to do. Having been in a nursing home since she was 17, Vicki simply has not had the opportunity to truly experience her teenage or early adult years. Vicki has become a champion of this issue, recently appearing on 60 Minutes, and is a tireless campaigner.

Another plight is that of the family of Chris Nolan. Chris, a former St Patrick’s boy, has been living in an aged care home because the community accommodation he needs does not exist. He is in need of high-care continuous nursing. Tragically, Chris suffered an acquired brain injury when working as a solicitor in Hanoi in 1995. By all accounts, Chris Nolan was bright, funny and had a passion for life. However, because of his brain injury, Chris can no longer use his limbs and can neither speak nor see. Chris once lived in a world where he could communicate through an array of media, such as sport, academia and his work. Now he is trapped in a world where his only communication comes from being able to blink—one blink meaning ‘yes’ and two meaning ‘no’. Chris has spent the last eight years in an aged care facility with older people who are in need of high-care nursing.

These are but two cases; there are countless others in nursing homes across Australia. The numbers clearly demonstrate that the issue of young people in nursing homes is an area that needs ongoing action. The COAG agreement reached in February was a step forward and will go some way towards addressing the issue. At COAG it was agreed that $24 million over five years would be spent to ease the crisis of young people in nursing homes. It is a good step forward. Hopefully, this is a sign of further cooperation between the state and federal governments. For too long this issue had been batted back and forth between state and federal governments, each claiming the other was responsible for funding accommodation options for young disabled people with residential care needs.

The COAG process has broken that down a little. However, while there is some goodwill and some funds now available it will require sustained effort. While COAG represents the first step, there are many more that will have to be taken before all young people in nursing homes are receiving appropriate care. There are over 6,000 people under the age of 65 across Australia living in nursing homes. Eleven hundred of these people are under the age of 50, while a further 30 are under the age of 25. The recent Senate Community Affairs Reference Committee inquiry report, Quality and equity in aged care, identified this issue as requiring urgent attention. I highly recommend that people read that report.

While the money made available through COAG will provide much-needed alternatives for young people in nursing homes, it will by no means resolve the problem for everyone. On the day I put my name down to speak on this motion, I received an email from Mark in my electorate. It reads:

My name is Mark Bromley and I am a Ballarat resident. I confess that I never thought I would ever write to a politician! The reason for doing so is to express my disappointment at the lack of facilities for the disabled in Ballarat.

My wife (Margaret, aged 44) suffers from a disability called cerebellar ataxia (not dis-similiar to MS). This is a progressive illness for which there is no known cure.

Up until now, we have been able to manage with Margaret at home. I still work (and pay taxes!) and we access a carers allowance of approx $100 per month.

This is well and truely cut out with home help provided by the Ballarat City Council.

The issue for me is not the money but more the facilities, or lack of, that are available to support us. Ballarat Health services have been very helpful and accommodation but there is only so much that they can do.

We have accessed private overnight “respite” care on the few occasions that I am required to travel for work.

The difficulty is that Margaret’s condition is deteriorating and her needs are increasing.

The place where she has stayed previously will eventually be unable to cater for this. That’s fine, for they look after a particular part of the market.

The trouble is that the “high care” facilities do not offer overnight respite and even if they did a minimum booking of one week is required.

…       …            …

Sorry to have a winge but it is really frustrating. I sometimes think that I would be far better to give up work and become a full time carer.

Financially, I’m sure I wouldn’t be that much worse off. I realise and understand that you cannot fix this problem but please add my name to a growing band of people that are very disenchanted with the health system provided to the disabled and their carer’s.

Mark, your name is well and truly added to that list, alongside the many people with disabilities and their carers who deserve a much stronger voice in this parliament. (Time expired)

Kay Elson (Forde, Liberal Party) Share this | Link to this | Hansard source

I am pleased to speak in support of this motion moved by the honourable member for Riverina. Before being elected to this place, I spent 15 years working for Multicap, the Queensland Spastic Welfare League and the handicapped association. In my work of co-ordinating fundraising efforts for these three worthy organisations, I often met and worked with families of disabled children and adults who attended and were assisted by the excellent programs these organisations ran then and continue to run today. By far one of the biggest concerns for these dedicated and caring families was the issue of who would care for their disabled son or daughter when they themselves were aged and frail.

There is not enough time for it in the debate today, but I could tell some truly heartbreaking stories of families stretched to the limit, of elderly parents putting their own health and safety at risk and of the sad situation they ultimately find themselves in if they are physically unable to continue caring for their adult disabled son or daughter. While we as a society have taken some very big steps forward to assist many people with disabilities to become more independent, the reality is that many will need a lifetime of care and support in some form. It is a problem that will continue for many years to come. There are currently 320,000 children aged from birth to 14 years with a disability.

For most of the last century, children with a disability were segregated in institutional settings. Happily that is no longer the case—in fact, the number of children living in institutions almost halved between 1981 and 1996. It must be recognised that, while very positive, this trend puts increasing pressure on many families. As the National Industry Association for Disability Services said:

Children with disabilities belong with their families, not in institutions, but families often require extra financial assistance and services to care for a son or daughter with a disability. Without such support, the impact of disability can impose significant pressure on parents and siblings and can lead to family breakdown.

Over the past 10 years the Howard government has introduced a raft of positive policies for families of people living with a disability, particularly in the area of more financial support and providing more respite care for full-time carers.

I welcome the $200 million package announced last October aimed at assisting parents to establish private trusts for the future care of their disabled children. It is a positive step forward that trusts established solely for this purpose will be exempt from social security and veterans affairs means tests. This will give many ageing parents peace of mind and allow them to more confidently plan for the future care of their children.

I also note that in February this year the Council of Australian Governments agreed, as part of the health care reforms, that a new program would be initiated to reduce the numbers of young people with disabilities living in nursing homes. Any review of the accommodation needs of our young adults with a disability should be welcomed and applauded. The sad situation of young people living daily with frail and aged in our nursing homes is not acceptable. However, as ACROD have said:

It is essential that governments view this measure as only the first step in the reform of—

the aged care and disability services sector. I take the view that, while much has been achieved over the past 10 years, there is certainly a lot more that can be done. I note the second part of this motion calls on state and federal governments to work together to address accommodation and care issues.

The spirit of the COAG decision in February is certainly a very positive step forward. This is a problem we have to work at, and we have to work together to solve it. We simply must ease the burden on parents of children with a disability, especially ageing parents of adult children who may develop care needs of their own. What aged parents of disabled adults in my electorate are telling me is that their priority is to see the government establish independent living and residential care complexes. Parents of disabled adults want peace of mind, and they want to be assured that their adult children are not going to be placed in nursing homes with the sick and old. When parents find themselves no longer able to care for them because of age or ill health, they want to have the peace of mind that their children will have lease or ownership of these units and can live there for the duration of their disabled lives—and that severely disabled people, especially young people, live in supportive accommodation where they do not have to live with the aged and frail but with people with like minds. As the member for Ballarat said only a few minutes ago, these people are very intelligent young people but their body motor systems are not coordinated.

I urge governments at all levels to continue working towards improved services. I recognise the best way to ensure we can fund these programs in the future is to manage and grow our economy. I thank the member for Riverina for bringing this important issue to the House today. (Time expired)

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

I, too, thank the member for Riverina for moving the motion and the member for Forde for seconding it. It is a very important matter. It affects many people in this country and I would doubt if it did not affect every member in this place. There are constituents in every electorate who have to confront the difficulties in finding proper accommodation for their disabled children. Only last month I think the member for Melbourne moved a similar motion just subsequent to the COAG meeting. It was debated in this place. He, along with five other members of the House, debated the needs of approximately 1,000 Australians under the age of 50—who are currently living in nursing homes because they have a severe disability—and looked at finding ways to ensure that they are able to find proper accommodation.

From my point of view, there is an absolute need to focus upon the needs of ageing parents or carers who are worried witless about what will happen to their children in the event of their death. They are worried that there are not suitable service provisions of government or other organisations in order to attend to the needs of their children. Indeed, the disabled people themselves who have for many years been reliant upon their parents, family members and friends are only wanting to be treated decently in what is a relatively wealthy society.

As a result of the COAG agreement on 10 February this year, $244 million was in fact put aside to jointly establish a program managed by the states and territories, but also funded by the Commonwealth, in order to attend to this blight on our social services. That is a wonderful instalment, but it falls far short of the requirements needed to, firstly, find proper accommodation for those disabled people under the age of 50. In fact, it is the case that one in six of those people currently in what I would term inappropriate care may find better arrangements as a result of such funding. That is, as I say, an improvement but it falls a long way short.

Only last month I was involved in a debate of a similar nature. It certainly focused on some of the matters that have been raised by the member for Riverina. I think it is absolutely fitting that we in this place raise these matters time and time again until governments, at both federal and state levels, realise that it is absolutely critical and that families who have had to endure such challenges and difficulties as a result of children, in many instances, being severely disabled are looking to government. In many ways they are the most vulnerable in our society. Indeed, anyone who knows a parent or a primary carer who has looked after a disabled child knows how life changing that is. Whilst it can be very fulfilling, it is a very difficult task and it would only be fitting that governments of this nation attend to the needs of people with severe disabilities and put the minds of the carers—indeed, their parents—at rest so that they know that, whatever happens, those children who obviously have had enough difficulties to confront will be adequately looked after and properly accommodated for their entire lives. I am very happy to support this motion moved by the member for Riverina. I think it is a very good response and, hopefully, the government will attend to it.

Kym Richardson (Kingston, Liberal Party) Share this | Link to this | Hansard source

I rise today in support of the motion moved by my colleague the member for Riverina on the appalling state of adequate accommodation available for disabled children. I call on the Labor state governments—as the Prime Minister recently did at the February COAG meeting—to pull their weight in this area. In particular, I call on the South Australian state government to substantially increase the funding, services and infrastructure significantly lacking in my state. This motion notes the problems of ageing carers who are unable to find accommodation for the disabled child for whom they care and who, at the same time, are often faced with the need to move into supportive or aged care facilities themselves.

I have met with constituents in my electorate of Kingston who are faced with that heartbreaking problem. Quite often, it is grandparents who come to my office about this situation. They come as the primary carer of a disabled child. Invariably, they have struggled internally to accept the fact that they themselves need to move into an aged care facility. But imagine their torment when they discover that, despite making that decision, it is not possible because they are unable to find accommodation for the disabled child or disabled adult they care for. This leaves many ageing carers in a situation where they are forced to remain in their homes, without the support they so desperately need and in the precarious situation where they are vulnerable to accident and/or injury.

This motion recognises the $200 million package announced by the Prime Minister to assist parents to establish private trusts for the future care of disabled children as well as the role of the expert advisory panel in advising on the implementation of the package. I support the member for Riverina in her call for the minister to instruct the panel to investigate the merits of establishing a new financial and insurance product to assist all parents of disabled children in planning for the future care of their children and/or adults. This issue must be addressed. The disabled are some of the most vulnerable in our community. They lack the ability to conduct their daily lives without the assistance of their dedicated and tireless carers. We cannot simply ignore the plight of carers and the disabled children to whose lives they bring meaning. We must address the very real problem which exists when it comes to finding them appropriate accommodation.

The final part of this motion calls on both the state and federal governments to work together to urgently resolve the accommodation and care crisis which is facing not only the disabled but their carers as well. When it comes to important issues such as this, we must put politics aside and work together to provide for this group which has so often been forgotten in the past by governments of all colours and at all levels. In South Australia we face a crisis when it comes to disability services, not only in relation to accommodation options but in relation to services across the board. The only way that crisis is going to be adequately solved is through cooperation between all levels of government, not just state and federal but also local. I support this motion because it is a very practical step towards assisting the families of people caring for children with disabilities. We must raise awareness about the needs and plight of the disabled as well as those who undertake the often thankless job of looking after them. They are inspirational people who deserve the support of government.

Annette Ellis (Canberra, Australian Labor Party) Share this | Link to this | Hansard source

It is a pleasure for me to have the opportunity today to speak to the motion brought forward to the House by the member for Riverina. I congratulate her on doing that today and I join with her in what I understand to be a very strong passion of hers in relation to the representation of people with disabilities in our country. I recognise the work that the member for Riverina has put into making many members of the government and of this House more aware of the issues facing people with disabilities, their carers and their families. I think she may have had something to do with the backgrounding of the government in relation to the announcement made in October last year of the $200 million towards the establishment hopefully of some private trusts to help out in the future.

Can I very quickly say two things I wish to recognise of the government. The first is the $200 million that they made available from last October and the work that I understand is going on to establish that particular process. I also recognise the $244 million over five years that was announced through the COAG process to address the issue of young people in nursing homes. These issues are related, and I recognise and thank the government for those two initiatives. Any step forward is a step forward that we must recognise and acknowledge.

In relation to the $244 million for the young people in nursing homes campaign, can I say that I truly believe that that will only be effective if we see another $200 million or $300 million next year and another $200 million or $300 million the next year and the next year so that we have a cumulative effect. I am hoping very desperately that that $244 million over five years does not mean that we do not hear anything for another five years. My emphasis would be that the only way we could ever begin to approach that issue is to have that sort of government policy and that sort of government announcement.

In relation to accommodation for people with disabilities generally, there are a couple of things I really need to say. First of all, I would like the government to make available the numbers that exist around Australia of adults living with a disability in the care of an ageing parent or an ageing couple of parents. My suspicion is that there are many, many thousands of them—and this is just one category alone. Not all of them will be able to afford to set up trusts. There will be many who can, and they will be encouraged to save for the future needs of their children through this process, but there will be many who will not be able to.

We really need to understand the dimension of these numbers. I fear the high number and I am very concerned as to exactly what we as a society—I am not talking about governments here—are in a position to offer to assist these people into the future, because that is what we are talking about. There can be nothing more discouraging for an ageing or aged parent, particularly and generally a woman on her own. Her husband may have passed away, she is in her 70s or 80s and she has a 40- or 50-year-old son or daughter with a disability living in the household with her with no idea of what is going to happen in the future.

Several things need to occur. First of all, we need to be able to offer those families options. They may be options they can afford; they may be options they cannot afford and that we need to assist with. We cannot encourage these people to even consider that unless we have those options in front of them. One of the most difficult things is to encourage these families to believe that their child does in fact have the hope of an independent life outside that family. I know that many members in this place will be very aware of people who clutch their children into the bosom of their family because they believe that nobody else can care for them as they do. Why should we blame them for that when we have not given them anybody to care for them, when we have not provided that adequately in first place?

We really need to have a two-pronged approach to this. One approach is, yes, certainly, to set up these trusts—future savings for children of the future. If a child is born with a disability, why on earth do we run around like mad people 25 years later wondering how to house them when we have known they have been coming for 25 years? So the trust establishment is a very good idea, but it will only work if there are alternatives as well for those who do not have the financial ability or where there are other considerations, where society and government at all levels step in and help.

The previous speaker, the member for Kingston, had a bit of a go at the South Australian government. With the greatest of respect, we have to stop doing that. It is not any singular government’s fault; it is the society in which we live, the community that we represent and how we care for these people collectively that really matters. Pressure from people in this place is a very good start. I put my support behind what has been done so far, but I implore all of us to continue to support any initiative and to put the pressure wherever it is needed to improve this whole situation into the future. (Time expired)

Ian Causley (Page, Deputy-Speaker) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.