Ms Anna Burke (Chisholm, Deputy-Speaker) Share this | Link to this | Hansard source

The question is that the motion be agreed to.

Joanna Gash (Gilmore, Liberal Party, Shadow Parliamentary Secretary for Tourism) Share this | Link to this | Hansard source

Let me make no bones about it: Australia’s treatment of those living with severe and permanent disabilities and their families or carers is offensive and discriminatory. In a society as advanced as ours, as wealthy as ours and as mature as ours, it is a failure of morality that we are not doing more. This is a group that crosses every culture within our community but remains significantly marginalised from participating in community life. There is so much that needs to be done. It is bigger than one minister, bigger than one government and requires us to recognise the need for bipartisan support. I first spoke on this subject in 1999 when speaking to the Assistance for Carers Legislation Amendment Bill. I said at the time, and it still holds true:

I cannot begin to imagine how difficult life as a parent could become while looking after the needs of three children with disabilities … There is no holiday pay, no sick pay, no workers compensation or superannuation. The job that carers take on is a lifetime one.

The carers in this country, ranging from a young child looking after a parent to the elderly parents of a severely disabled adult child, are treated as second-class citizens. These are people who should, in no uncertain terms, be revered and recognised as our heroes, but we have let them down. We have been able to get away with it because they are all too tired and too busy to fight us.

The huge surplus this government has been left provides an ideal opportunity for us to show we are bigger than the blame game. The Prime Minister has to be taken at his word—that he and his government will put a stop to the blame game. We need to ensure that choice is the key. Just as the Prime Minister has identified with the Indigenous housing problems, there is no such thing as a ‘one size fits all solution’. For too long disability services have been chopped and changed depending on the minister in control. A joint policy commission to end the handballing of responsibility needs to be established as a matter of urgency.

A joint commission must understand that organised advocacy groups are not the only voice for those living with disabilities. They are a voice, but to date they have often had too much say and control, with sometimes dire consequences for those affected but not consulted. This politicisation takes on a life of its own and eventually superimposes its needs over the primary goals of the group. The member for Maribyrnong, Bill Shorten, got it right when he said:

In this great country, if I were another skin colour or if I were a woman and could not enter a shop, ride a bus, catch an aeroplane or get a job, there would be a hue and cry—and deservedly so—but if I am in a wheelchair or have a mental illness or an intellectual disability then somehow the same treatment is accepted. Why should I be told to be grateful to receive charity rather than equality?

The Wikispace WhatCarersNeed is the perfect space for all carers to have their say and for governments to use as a resource. One contributor said:

I am a mother, a nurse, a therapist, a playmate, a teacher, a friend, a babysitter, a cleaner, a nutritionist, a psychologist, a secretary and other things. The person I am caring for would prefer I was just a mum and that others would enter his world and share some of these roles. There really needs to be a shake-up, as there is too much bureaucracy—too much ticking and flicking and updating databases with our personal information and no hands-on support. We need help at home, we need somewhere safe to take our kids when it is just too difficult. We want some tax relief for the special equipment we have to purchase, and extra activities that gives our children more opportunity in life.

Closer to home is the story of Gloria and Keith Masson and their daughter, Jenny. Mr and Mrs Masson have written to me imploring that something be done to help them because they were in desperate straits, highly stressed and with little prospect, if any, of finding respite. After detailing in their letter to me just their expenses for sending their 31-year-old daughter to a respite service in Canberra, they justifiably asked, ‘How can that be fair?’ It was a huge cost to them, $631 per night, which for a 10-day stay cost them $6,310. There are myriad stories out there, all pointing to the fact that not enough is being done.

The Labor Party is in government at both state and federal levels, so what better opportunity to enter into a pact and to actually get something done? In the end, any initiative must endure beyond the term of any one government and must be coordinated in such a way as not to be compromised by multiple levels of bureaucracy. In this matter, it must be a one-stop shop and must take away unnecessary pressures from the very people it purports to assist. This has to be a bipartisan approach, above and beyond the temptation to score brownie points.

We are a prosperous nation; we can afford to do this. We are also a nation with high ideals and morals; we must do this. We are also a highly compassionate nation; how can we not do this? I commend this motion to the government in the strongest possible terms.

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

I congratulate and thank the member for Gilmore for bringing this motion to the House. As she and other members know, this has been an area of enormous interest to me ever since I have been here, which is 11½ or 12 years. I have had many an opportunity to stand up in this place and speak about the needs of people with disability. In 2003—there may be more recent figures, but these are the most recent ones I have—the ABS estimated there were approximately 700,000 Australians under the age of 65 across Australia who were living with severe and profound disabilities. That included almost 250,000 children. During the Senate inquiry into the funding and operation of the CSTDA, which was completed last year, people with disabilities and their families and carers made a compelling case for disability reform. Amongst other things, they spoke—as did the member for Gilmore—of the blame game between governments. One of the witnesses to that inquiry could not have put it better when they said:

The States say they are doing their bit, but the Commonwealth is falling short. The Commonwealth says just the opposite. Frankly, I don’t care about playing the ‘blame game’, I just want the system to work.

Nearly all witnesses told the inquiry that disability must be the responsibility of all levels of government working together. The job cannot be done by one government alone, nor by each government working in isolation. I am really pleased that we have a motion talking about a bipartisan approach and bipartisan support. I join with all of my colleagues on both sides of the House in supporting, together with the state and territory governments, the idea that we work to reform and improve the disability system in this country.

On 1 February Jenny Macklin, the Minister for Families, Housing, Community Services and Indigenous Affairs, and Bill Shorten, the Parliamentary Secretary for Disabilities and Children’s Services, met with state and territory disability ministers to progress negotiations on the fourth Commonwealth state/territory disability agreement. The meeting proved successful, with all representatives from each level of government agreeing to implement eight priorities and to the development of an overarching national disability strategy. It is an acknowledgement of the valuable work taking place across the jurisdictions that that sort of approach is there. But, as you have asked, Member for Gilmore, it is now about ending the blame game and working cooperatively together.

I believe that we are on the right track to improving the lives of the over 3.9 million Australians—that is one in five of the population—with a disability, if we take the measure as a whole. The eight priorities that were listed through that meeting include disability reform relating to: better measurement of current and future needs for disability services; moving towards national population benchmarks for key disability service types; making older carers a priority for all disabilities services under the CSTDA; quality improvement systems based on the National Disability Services Standards for all CSTDA services; focusing—and I am so pleased about this—on early intervention, lifelong planning and increasing the independence and social participation of people with disabilities; workforce planning; and access to disability services by Indigenous Australians.

I know that most of us in this House who have been here for a while have had the opportunity to work, through committees and in other ways, where disability is concerned and have had wonderful opportunities to see what we do really badly and to understand what needs to be done to improve the services across the board. We could all stand and cite example after example of individuals and communities—all sorts of people and all sorts of places around our society—where we see such a terrible distinction between how people with a disability or chronic illness are treated and how people without those circumstances are treated.

I am just so pleased that we are now on a path, hopefully, that will take us right through to the fruition of lifelong planning. If a child with a disability comes along, why do they continue to fall off that pathway as they go through their lives? There needs to be seamless planning. There needs to be underpinning of resources. There needs to be a commitment—and we already have it, it seems to me—that across jurisdictions and across all different socioeconomic and other areas of the community we will see definite forward planning and services to improve the lives of people with disability, their families and their carers and allow them to participate in our communities and our society in a very full, wholesome and proper way. I do not think any of us could wish for anything better than that.

Judi Moylan (Pearce, Liberal Party) Share this | Link to this | Hansard source

I first thank the member for Gilmore for bringing this motion to the House today and say that her advocacy for carers, the disabled, the aged and the chronically ill has been consistent, strident and heartfelt since she was first elected to this House. I also acknowledge the staunch advocacy that has come from the member for Canberra since her election. I am pleased to support this motion and have the chance to speak to it.

How shameful it is that, despite being a wealthy nation and blessed beyond belief, we continue to treat those with a disability like second-class citizens. As a minister in the first Howard government with the responsibility for the disability sector, I have to say I was proud that for the first time a Prime Minister took serious notice of carers and, indeed, during that term of office funding for carers grew by 440 per cent. They had previously not been recognised at all. They had trouble, even as an advocacy group, making their voices heard in this place.

I was also in awe and many times inspired by those with a disability, by their determination and their stoicism, and by the dedication of the few who devote themselves to caring for people with a disability. People with a disability come from all walks of life and, within our community, the range of disability varies both in type and in terms of the impact on people’s lives. As the member for Gilmore has said, the challenges for these people remain significant and it will take genuine bipartisan support for us to be able to meet those challenges in any meaningful way.

Like my colleagues, I have encountered parents of children with profound disability whose lives are inexorably changed and who take on the caring role with love, with determination to minimise the impact on the quality of life of their children and with cheerful dispositions but, on a practical, day-to-day basis, carry on that caring role 24 hours a day, seven days a week, 52 weeks of the year. Over these past few days since the debacle over the threats to do away with the one-off payment for carers—which we are reassured will continue now—one mother wrote to me saying that she and her husband had spent three years trying to get an electric wheelchair for a severely disabled daughter and had to take desperate steps to get noticed before support was forthcoming. This really and truly is a shameful situation and again highlights—and it has been highlighted by the comments both my colleagues have made—the need for there to be greater coordination between the state, territory and Commonwealth governments and less ticking of boxes and more action on the ground.

Ageing parents who continue to care for grown sons and daughters long after their physical, if not mental, health has been severely strained, live day to day with the stress of worrying about the future of their children after they, the ageing parents, pass away. One of the worst cases that I ever had to intervene in was an octogenarian whose adult son moved into the hospital with his mother when she fell ill. He was in his 50s. Sadly, when she passed away he continued to live in the hospital ward until I was contacted by a member of the community and, with the help of the local shire president, we made arrangements for his admittance into an aged-care facility. I must say it was long before he really needed that level of care, but that was the only place that could be found for him to go to—such a disgrace.

As minister, I frequently met youngish couples who had both given up jobs in the paid workforce to take care of ageing parents so they did not have to be admitted into aged-care facilities. With much reduced incomes and increasing costs, they struggled to balance the budget. They had given up work in the paid workforce, which had implications beyond budgeting for the many additional costs and medications of caring for ageing parents; it meant sacrificing superannuation.

I fully concur with the sentiments expressed in this motion and I give the call for genuine bipartisan support for a comprehensive approach to meeting the needs of  those with a disability and their carers. They have my full and totally unqualified support.

Nick Champion (Wakefield, Australian Labor Party) Share this | Link to this | Hansard source

I am happy to support the motion. During the campaign, I had 71 street-corner meetings and invariably at these meetings either people with disabilities or their carers would tell stories that would make your heart melt. There were stories from mothers with autistic children and parents with adult disabled children who were terribly worried about what would happen when they as carers passed away or were unable to care for their children. I visited many schools—such as Elizabeth Special School, which has far more demand than it has space for. This is obviously an issue which affects the whole community and it is bipartisan in nature because one cannot help but be moved by some of these experiences.

My observations are that families are the greatest resource in this area, but they need services close to where they live. That is a big problem in Adelaide, where all the services tend to get put right in the middle of Adelaide rather than in the suburbs. Respite is a problem. I think that families often need to share their experiences with others in a similar situation. I think those networks are important. Schools, GPs and community groups do a good job, but I think that, in particular, awareness, empathy and understanding could be improved. The government has a big role in that. Many of the parents I talked to had to discuss things over and over again with GPs, schools or other institutions just to get their needs heard.

There are some very interesting figures on this issue. In terms of education, 29.6 per cent of people with disabilities aged 15 to 64 who are living in households completed year 12 compared to 49 per cent of people without a disability. In terms of labour force participation, 53.2 per cent of people with a disability in the age group of 15 to 64 are in the labour force compared to some 80 per cent of people without a disability. So there are life-changing incidents caused by a disability and I think the government and the community need to continually look at what they are doing to improve that.

As my colleague the member for Canberra said, there have been some meetings. Jenny Macklin met with her state counterparts on 1 February, and we have eight priorities. We also have a national disability strategy, which is basically the same as this motion in its policy effect. We will be working cooperatively with the states and territories to implement that strategy. It will canvass the full range of issues that impact on disability policy. It will set the direction for future disability legislation policy and standards. It provides the opportunity for innovative approaches, including support for social inclusion and participation. It provides an opportunity for people to work together across sectors and jurisdictions to ensure that there is coordinated and comprehensive policy planning, and the strategy will build on the good work of the disability policy reform that has been undertaken so far. I think that a national disability strategy will provide a foundation for leadership in this area and that will continue for more than one government term.

Bipartisanship requires some responsibility to be taken on the part of all the parties, and I think that some of the opposition’s rhetoric about bonuses—and its seizing on media stories—has been both irresponsible and desperate. It has worried a great many of my constituents. I think that the Prime Minister’s commitments in these areas have been welcome news to those people, but they should never have been concerned in the first place.

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

I have long been an advocate in this House for the disability sector, along with the member for Gilmore. I would like to bring to the House’s attention the almost 24,000 Australians who are in need of disability accommodation and respite services. This fact alone demonstrates the need for governments to substantially increase their funding. This must be a joint effort. In the electorate of Riverina is an industry group, Kurrajong Waratah, of which I am the patron. Kurrajong Waratah has a growing waiting list of parent-carers who are ageing and still looking after a son or daughter with a severe and permanent disability at home who needs accommodation support. There are over 40 families known to Kurrajong Waratah who are literally a heartbeat away from a care crisis. The oldest is a 92-year-old mother still looking after her 65-year-old daughter at home. The carers are too busy with their care role to have the energy to advocate for their clients’ needs. Many have simply given up on Commonwealth and state governments ever helping them.

Last year’s important bipartisan Senate report into the Commonwealth state/territory disability agreement made 29 recommendations. All of the recommendations are worthy of support. The primary recommendation of the report was that funding for disability services from both levels of government be substantially increased. Prime Minister Rudd has promised to end the blame game between the Commonwealth and state and territory governments, and I really do welcome that. There is no policy area more urgently in need of this commitment than disability services. The challenge for the new government is to turn its rhetoric into reality; older parent-carers have heard the talk before. I have advocated this in this House before, as a member of the former government. It is time for governments of all persuasions to stop using one of the most vulnerable groups in the Australian community for populist rhetoric, and to walk the walk and provide the hope and the security that these families need. They deserve greater certainty. To achieve that, governments need to commit to multiyear budgetary planning based on realistic estimates of the current and future need for services.

Aged care has a planning ratio of around 113 places per 1,000 Australians aged 70 years and over. Unfortunately, in disability services there is no equivalent. There definitely should be. We know that only 50 in every 1,000 Australians with severe or profound disability receive any form of accommodation support funded through the CSTDA. The chronic lack of funding underpins the culture of crisis management that dominates the administration of disability services. Victoria’s Auditor-General has recently reported that the lack of planning in Victorian disability accommodation has created a ‘crisis driven system’. That criticism could be justly made of all disability accommodation systems around this country. No wonder that our ageing family-carers are very apprehensive about what the future holds for their sons and daughters who have disabilities.

Kurrajong Waratah and the disability industry in general are facing an additional crisis that will affect both the quality and availability of care, particularly in regional and rural areas: labour shortages—a shortage of those who are willing to work in the disability sector. It is granted that there are workforce shortages—they are common in many industries—but the shortages in the disability sector are exacerbated by the low public recognition and low valuing of disability services as a career option; the lack of national workforce data to inform planning for disability services; and indexation of disability service grants at a level that does not keep pace with wage costs—and we all have that in all of our facilities in all of our electorates. Nationally, general wages in the year to March 2007 increased by 4.1 per cent, yet the Commonwealth government indexed disability grants at only 1.8 per cent. The inadequacy of that indexation was highlighted in evidence provided to the Senate inquiry into the operation of the CSTDA. Whilst in July 2007 both state and federal disability ministers agreed to add workforce issues to their priorities for the next CSTDA, no nationally coordinated effort is yet evident. I thank the member for Gilmore for raising this issue in the House and giving me the opportunity to state the facts as to what the disability sector is experiencing in the electorate of Riverina and right across Australia.

Julie Owens (Parramatta, Australian Labor Party) Share this | Link to this | Hansard source

I thank the member for Gilmore for moving a motion calling for a bipartisan approach to improving the provision and delivery of services to Australians living with severe and permanent disability and their families and carers. This is exactly what is needed in so many areas and it has been for such a long time—a comprehensive look at the way state and federal governments work together to deliver services and a clear recognition that this most vulnerable group in our community is more in need of being put first, above politics, than perhaps any other group.

I am pleased that the Rudd government moved very quickly on this. In fact, in the government’s first 100 days, the federal and state ministers for disabilities got together to progress negotiations on the fourth Commonwealth state/territory disability agreement and the development of an overarching national disability strategy. The national disability strategy will provide a foundation for national disability policy leadership which will continue beyond any individual government’s term. It is absolutely time to end the blame game and work cooperatively together for the benefit of the over 3.9 million Australians—that is, one in five Australians—who live with a disability.

In my first weeks as the representative for Parramatta—about three and a bit years ago—I was well and truly put in my place by one of my constituents about my responsibilities when it came to federal-state relationships. Her name was Elizabeth—she knows her last name and so do I. She wrote to me about a state matter and I responded by saying that it was a state matter. She wrote back to me in the strongest terms pointing out that that was my problem—that politicians make choices about what is or is not in their area of responsibility and that I should not impose my choices on her. She said state-federal divisions were my problem, not hers. I have to say that she had a point. It is not a perfect point and it is not always a practical point but, when it comes to people living with disabilities, it is the only practical approach. Families of people with disabilities already live with extraordinary barriers due to their disabilities. The rules, the extraordinary routines of care, the unpredictable nature of their needs and difficulties travelling or even moving about are obstacles to overcome just in moving through a normal day. These people do not need additional bureaucratic obstacles or governments creating divisions of responsibility based on anything other than how best to make it possible for people with disabilities and their families who care for them to do the things they need to do just to get through the day, let alone flourish.

There are many examples in my electorate of people trying to find services but being stuck in funding or service boxes that do not quite fit them or stuck between boxes and trying to find ways to live their lives within funding models that are rigid or inadequate for them. They are unclear of which level of government is responsible for what or, worse still, they do not know who is responsible. But they live somewhere in the gaps that are left after responsibilities have been allocated to one level of government or department. One of the most compelling of these is the families with children at Kingsdene School. It is a school with about 20 children. It is funded on a three-way agreement between the New South Wales Department of Ageing, Disability and Home Care, the then Commonwealth Department of Education, Science and Training, and Anglicare. Kingsdene is part of the lives of families with children with profound disabilities. Most of the students are non-verbal, and they cover the full range from preschool to age 17. They go to school to do things like learn to use a modified spoon or make friends without pulling their hair out. Kingsdene is unusual because it is a combined residential school facility, with the children staying overnight at the school during the week and going home on the weekends.

While the state funding is recurrent, the school has had to apply to the federal government each year without really fitting within the funding guidelines. The strain of not knowing each year whether the school will be able to offer a place for their child has had families at breaking point. Kingsdene is an example of an extraordinary service for people living with a profound disability but, because it provides a different kind of service from most other schools, it does not fit neatly into the funding boxes. If Elizabeth who wrote to me about state-federal responsibilities is listening, she will write me a letter tomorrow saying that I am in the government and the funding categories are my problem and should not be the problem of the parents of Kingsdene—and she would of course, once again, be absolutely right. In government we have to have rules because we are responsible for taxpayers’ money. But it is worth reminding ourselves today and every day that, in a perfect world, services would be delivered as needed, particularly to those in most need.

We are unlikely to reach the perfect world, but we can start towards it by removing the politics and the artificial divisions of responsibility that make life easy for governments and bureaucrats but harder for those who need help. We on this side have started it with the beginning of the development of the National Disability Strategy. We have a long way to go. I have met the parents of Kingsdene. They are good parents. I will no doubt face them again in a few months and they will want to know how we are going. (Time expired)

Danna Vale (Hughes, Liberal Party) Share this | Link to this | Hansard source

I welcome the opportunity to speak on this issue and I am grateful to the member for Gilmore for raising this important matter before the House today. I am very pleased to note the warm response to and bipartisan support for this important motion. So urgent is the need in my electorate for supported accommodation that a group of parents concerned about the lack of services available in the Sutherland Shire formed a group called the Sutherland Shire Disability Accommodation Action Group back in 2005. One of the issues most raised on the occasion that the group was formed was the lack of supported accommodation for their adult children with intellectual disabilities. Sadly, we are now into the third month of 2008 and the issue still exists unresolved and untouched in the electorate of Hughes—and, I assume, in many other electorates across the nation.

In December 2006, this group became an incorporated association, with Mrs Judy Foord appointed as president and Mrs Kate Tye as secretary. Both these women are mothers of children with intellectual disabilities. The association has three main objectives: to obtain supported accommodation for family members located in their own area, to obtain accommodation that offers tiered layers of continuous care and to create a register of need. Alarmingly, the Sutherland Shire Disability Accommodation Action Group found that there was no planning for future accommodation needs. The group then facilitated a public meeting on 6 February 2007, which was attended by 95 parents and carers. The objectives of the group were published and a register of need was commenced, with 71 registrations received that day. Another 47 names have been added since, and there are more added on a weekly basis.

Perhaps the most important way of explaining the situation of people who have a serious disability within their family is to tell a personal story. I would like to recount one from a lady known as A.M. She writes:

Whenever I read about another mother killing her disabled child, I wonder whether it will come to that for me, and would I be able to do it? People do become desperate and overwhelmed. My disabled daughter ‘S’ has become my world and I, hers. And therein lies the problem.

She was born in 1978—induced for the doctor’s convenience as he was going on holidays. She turned blue and stopped breathing. She had streptococcal pneumonia and was found to be 4-6 weeks premature. She spent a month in special care.

From about six months of age I knew there was something wrong. Then followed years of doctors and therapies until I finally had to admit you can’t mend a broken brain.

Eventually, she attended a special school. Transport was provided but I needed to be there before and after school so full-time work was out of the question. One problem with going to school out of the local area was that she had no friends to play with and so all her time was spent with me.

Eventually I found a job with a small company run by a couple with children of their own. They were very flexible with hours and emergencies and phone calls. I brought ‘S’ to work with me on schools holidays.

In 1996 my marriage, like so many others involving disabled children, had come to the point where I took ‘S’ and left. I had calculated all eventualities before taking such a big step—or so I thought ... I was working for the small company and ‘S’ was travelling by train to her day-program and managing alone with a few phone calls, until I got home.

Six weeks later the small company collapsed. I quickly found a job with a big company—no flexibility, longer hours and NO phone calls. ‘S’ went on a 4-night ... camp for a break. When she returned, something was terribly wrong. She didn’t sleep, muttered all night to someone, cried all day, got lost following ‘voices’ and didn’t remember to eat or drink. Eventually she was diagnosed with schizophrenia brought on by her absolute terror in being apart from me. Even with hospitalisation and treatment the situation was horrendous. She was drugged, terrified, and either constantly crying or staring at the wall for hours. In the 30 minutes it took me to get to work each day there would be 10-12 phone message awaiting for me with her just crying. She could not travel alone or stay at home alone. Finally, the company gave up; I was fired, and thus became her carer.

People sometimes think that carer equals no full time job, equals what a life. Well, imagine all you’d for very young children—dressing them, washing them, cleaning them after ‘accidents’ and then imagine doing it for a 28 year old woman, who won’t learn to do more than she does now. Imagine never being able to go anywhere alone—not even to see a friend for a chat or a cup of coffee without your ‘child’ with you. Imagine listening to her cry all night because you have a cough and she fears you might die and leave her. Imagine lying awake every night worrying about what WILL happen to her. We do have respite, but only one day a month. And now, four years ago, I was diagnosed as having Parkinson’s disease. My caring time is infinite. It will be the most difficult task to settle ‘S’ into a group home or similar accommodation. It must be done while I am here and able to help her cope.

I commend this important motion to the House.

Ms Anna Burke (Chisholm, Deputy-Speaker) Share this | Link to this | Hansard source

Order! It being 8.30 pm, the debate is interrupted in accordance with standing order 41. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.