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Legislative Council - Fifty-Second Parliament, First Session (52-1)
2011-07-29 Daily Xml
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DISABILITY CARERS

Adjourned debate on motion of Hon. K.L. Vincent:

That this council:

1. Notes with grave concern and sadness the recent passing of a young man with disabilities at the hands of his own mother.

2. Recognises that the Supreme Court has heard that the physical and emotional toll of being the full-time carer to a child with disabilities has played a part in the woman taking the life of her child.

3. Acknowledges that the desperation, helplessness and depression experts say was experienced by this woman is in fact felt by many other unpaid family carers of people with disabilities, particularly children with very high needs.

4. Understands there is a strong correlation between the physical and mental health of the carer and that of the person for whom they care.

5. Congratulates organisations such as the Carer Wellness Centre in the Adelaide Hills on its work to support carers.

6. Calls on this government to take immediate action to increase support, including mental health checks and respite for unpaid carers, with the aim of preventing another horrible tragedy such as the one which recently occurred.

(Continued from 6 July 2011.)

The Hon. S.G. WADE (11:41): I rise to speak on this motion moved by the Hon. Kelly Vincent on 6 July 2011. I share the concerns raised by the Hon. Ms Vincent relating to the physical and emotional stress suffered by family carers of people with disabilities and the devastating consequences that can result.

On 22 July 2009, Beverley Ellen Eitzen killed her severely disabled son as a result of her chronic depression. Her son Peter suffered from severe intellectual and cognitive disabilities. Not only did Peter struggle to walk as a child, it was hard to toilet train him and his schooling was extremely difficult. As he grew older he became violent particularly when he was frustrated.

Mrs Eitzen had difficulty obtaining assistance as Peter's disability was non-specific and it was difficult to categorise him. Mrs Eitzen had lived a long and difficult life as Peter's primary carer. In his judgement, Justice Sulan said that Mrs Eitzen became increasingly desperate about Peter's future, and it appears that she became severely depressed but did not recognise that she needed assistance for her own mental health.

Justice Sulan concluded that Mrs Eitzen was suffering from a severe mental illness, being a major depressive episode which had developed over a number of years, after considering reports from three psychiatrists who examined Mrs Eitzen. Mrs Eitzen was acquitted of murder on the grounds of mental incompetence.

The circumstances surrounding the death of Peter Eitzen are extremely tragic; however, they are not unfamiliar. Mrs Eitzen's case is one of many that highlight the severe stress carers of people with a disability live under. More often than not the work of these unpaid carers goes unrecognised and unsupported. The legality of acts is a matter for the courts, but the support of people with a disability and their carers is a matter for the community and this parliament.

In June 2009, the Julia Farr Association produced a briefing paper titled, 'Family members causing harm to their loved ones living with disability'. The paper addresses many of the issues that may be relevant to situations where family members harm or consider causing harm to a family member living with a disability.

It suggests some underlying factors which contribute to the pressures faced by disability carers, the lack of support for families, the concern about the future of loved ones living with a disability, lack of education on disability and the lack of appropriate accommodation for people with a disability. These factors, we are told, have been identified through an examination of cases that have occurred over the past 10 years in Australia and New Zealand.

Regarding the lack of support for families, the paper highlighted one case where a family had been turned down by eight organisations due to the complex needs of their daughter. In another situation, a family could only secure three hours out of the recommended 20 hours of support they required.

It is estimated that approximately 55,600 people living with disability and over the age of 30 are living at home with their parents who are over the age of 70. With the increasing number of ageing parents providing support to their loved ones living with disability, communities and services need to have regard to this challenge.

The Julia Farr Association paper identifies a lack of educational support as an important factor in why family members would consider causing harm to their loved ones living with disability. This was illustrated by a case where a baby was killed by her father when the family was not given immediate support following their baby's diagnosis but were instead sent home in a taxi.

In the cases examined by the paper, where a family member had caused harm to their loved one and had gone through court proceedings, it was found that they had diminished responsibility due to the demands and pressures of their role. This aspect was taken into consideration in determining their verdict, and the usual outcome was a reduced sentence.

The paper goes on to suggest some themes to consider to help reduce the likelihood of carers causing harm to their loved ones. One theme is families accessing sufficient resources to get through their daily lives. I will now quote the paper:

...there will always be some limits on the amount of public resources available for people living with disability. Part of the reason for this is that there will always be competing demands for the public dollar. Another part of the reason is that money cannot buy everything in life, for example a genuine sense of belonging within the community, intimate and loving relationships, a fulfilling job, and so on.

If it is accepted that resources are and always will be finite, then it is important that the available funds are used well.

We must then ask ourselves: what can the government and local services do to grow the capacity of communities to be inclusive of people with disability and their carers? Also, can the government demonstrate that it is spending public funds in ways that are delivering genuine outcomes for people with disability and in ways that are not wasteful?

Finally, if it is accepted that people with disability and family members are the best experts on their own lives, their own needs and their own aspirations, is this government giving them the opportunity to buy their own services? These are all important questions posed in the paper and should be considered as we develop appropriate responses to disability issues in our community.

The association considers it unlikely that all people living with disability and their families have access to information about the support available to them. Can the government and local services then demonstrate that it is as easy as possible for people to access the information they need? Also, has the government and local services successfully built networks with, and supplied information to, other people who may be involved with people living with disability and family members?

Another theme explored by the association is families growing their capacity to be successful as families. It is not helpful to assume that families must struggle if a family member lives with disability. Following the idea that families learn together and grow together, assistance should be provided so that families can make that journey successfully. We must ask how our government and local services are helping families to link up with other families in similar situations. Is the government offering planning support to every family that needs it?

Family members should be supported to plan for the future of their loved ones after they have gone. Considering the increasing number of ageing parents caring for children with disability, it would seem only logical that such support is provided. The association recognises that some family members cannot envisage anyone else taking on the primary support role once they are gone. It is also possible that, given the demand in more immediately fragile situations or crises, many ageing families are not known or adequately planned for by the government.

To assist people living with disability and their families to plan for the future, it is important to ensure that the planning is person-centred. This means that it is properly focused around a particular person's circumstances, needs and aspirations. It also needs to operate in the context of an ordinary, valued life.

A number of different methodologies are available to support people with disabilities and their carers in this task. This approach helps people, helps build the person's place in the community and helps the community to welcome them. As I said earlier, it is not just about services, but also reflecting on what is possible not just what is available. Questions should then be raised as to whether the government or local services assist families to undertake authentic person-centre planning, and how extensive and reliable is the information the government has about ageing family members who are providing support to people living with a disability.

These are all important questions which have been raised by the association and which, I believe, are also raised by the Hon. Kelly Vincent's motion. Again, I commend her for this motion as it is a part of her ongoing work to provide strong, clear advocacy for people with disabilities, and I indicate that the Liberal Party will be supporting the motion.

The Hon. T.A. FRANKS (11:50): I speak today on behalf of the Greens in support of the Hon. Kelly Vincent's motion regarding disability carers. As the honourable member has so eloquently expressed, the situation regarding Beverley Eitzen and the death of her son, Peter, is one of unbearable tragedy, not least because of the circumstances immediately surrounding his death. While our minds may leap to horror at the thought of a mother killing her own child, there are factors in this case that this government must address head-on and, perhaps, take partial responsibility for.

Human instinct teaches us to value life and to endeavour to protect it. As a compassionate society, we have put in place measures and legal guidelines to ensure that we provide protection to those who may be unable to protect themselves. This government has seen debate rage over euthanasia of terminally-ill patients and has consistently upheld the view that human life is precious, yet it does not seem to put its money where its mouth is when it comes to those living with a disability and those caring for them.

The government has determined that terminally-ill patients who are of sound mind—if not body—are not allowed to elect a dignified death because we as a society apparently value human life. Please do not misunderstand me: this is not a debate about euthanasia—it is a horrifying idea to muddy the idea of informed consent euthanasia with that of disability activism. But the fact remains that we have set a precedent of legislating to protect human life, and the evidence, particularly in the case of disability and carers, suggests that we do not follow through with this.

There can be no question that becoming a carer to a family member when no professional training has been undertaken and very little support is provided is one of the most challenging tasks a person could ever face. People living with a disability and in need of care deserve the utmost protection of the law because they are amongst our most vulnerable, yet the absence of both financial and emotional support provided to carers, especially of severely disabled persons, results in a system in which true South Australian heroes are being abandoned to a situation that even the most stalwart and compassionate of people would find challenging.

As the honourable member pointed out in her motion, one of the glaring problems of the Eitzen case was that 16-year-old Peter suffered from a disability that had no clear diagnosis. This resulted in Peter being declared ineligible for services, despite the fact that it was, as the member stated, medically accepted that he had the mental capacity of roughly a two-year-old child. But the mind of a two-year-old-child in the body of a teenage boy, a body that will continue to develop while the mind remains stationary, results in a potentially explosive combination that was experienced daily by the Eitzen family, particularly Beverley as Peter's primary carer.

The production of testosterone and other male hormones is evident enough in young men without an intellectual disability. Without the cognitive ability to process and manoeuvre the changes to his internal world, Peter's frustration expressed itself in violent outbursts that would often leave family members injured and property destroyed. The pain of caring for someone you love as they experience this trauma is hard enough, even with the aid of outside organisations.

Beverley Eitzen was a mother and a carer for her son whose disability had no clear medical term; because of this, our system declared him to be ineligible for services and thus Beverley ineligible for support. The vast majority of South Australians could not possibly understand what it was like for Beverley Eitzen to approach every day with the confusion of feeling both enormous love and trepidation for her son. Found to be suffering from a major depressive episode at the time of Peter's death, we can only presume that the pressure of being abandoned to a solo carer's path had taken its toll on her as well.

It is a tragedy beyond belief that Peter died at the hands of his own mother. No-one can think to state otherwise. But, before we cast judgement on Beverley Eitzen, let us remember that she was a woman who cared for her son every day for 16 years despite being abandoned by the system that she and countless others like her significantly helped to relieve. This is no ordinary case of maternal homicide. There is no benefit to be had in casting judgement here today on whether or not Beverley Eitzen is guilty of murder because her situation is, of course, unique. Yet, it is not that uncommon. It is not unusual for people to slip through the cracks when it comes to disability services and support.

Currently, there are countless carers throughout Australia performing work that significantly lessens the strain on government and government coffers, yet they receive little support and scarce financial aid. We do not know how many others may be close to the breaking point that Beverley Eitzen found herself in, but of this we can be certain: there are others. In large part, this is due to the way we categorise those qualifying for government services. As the honourable member noted, disability services are granted on a diagnosis-based rather than a needs-based consideration.

This is something that must be changed. It is absurd and insulting that we need to neatly categorise disability bases based on rigid diagnoses. Although it was medically evident that Peter Eitzen had the mental capacity of a two year old, the fact that no defined diagnosis was available to him effectively placed him outside the reach of appropriate services that could have been valuable and vital not just to him but also to the mental wellbeing of his mother and carer, Beverley.

Disability is not something that starts and ends with a medical definition. We are seeing problems within this sector now because we continue to treat disability as a condition rather than a way of being. As any person living with a disability or their carer can attest, it is not defined by formal names but by the reality of day-to-day living. There was no diagnosis for Peter Eitzen's disability and therefore he was considered ineligible for services, but what diagnosis would have been needed for Eitzen and others like him to qualify? Do they need to look disabled to satisfy our understanding of what disability is? Must there be a named syndrome that we can apply to them? Must they be physically incapacitated in some way? Logic tells us that this is not true.

What is true is that Beverley Eitzen was left to care for a severely disabled son who lacked the mental capacity to understand his actions but not the physical capacity to enact them. Beverley developed a major depressive disorder as a result of devoting her time, care and love to a situation in which no person operating alone could possibly hope to succeed. Without the emotional and financial aid owed to her as a carer helping to alleviate the burden of care from the government, Beverley and her son hurtled toward a situation nothing short of irreversible but so tragically avoidable.

The fact is that Beverley is not alone in bearing the guilt of Peter Eitzen's death. It is the system that has failed her; and it is us, the government, that has failed in our duty of care to support and value those South Australian heroes who demonstrate every day what it is we continue to base legislation on—the fact that we value human life. It is time for us to do away with protocol that sees us granting access to services based on diagnosis rather than need. Carers are not just undervalued in our society: they are all but ignored. Despite the fact that they perform one of the most selfless and important jobs that a supposedly compassion society has, we give them very little support while expecting them to keep up their end of the bargain.

The Greens support the Hon. Kelly Vincent's call for the government to take immediate action to increase support, including mental health checks and respite for carers and unpaid carers, so that we can say that we have truly done all that we can to avoid tragedies like Peter Eitzen's death. A simple step, of course, would be to offer support for a national disability insurance scheme, the proposed model operating on a needs basis and providing access to whole-of-life support services and schemes.

Additionally, of course, we need to not only have our carers charter (which I am pleased to say we do have) but we need to make that a living document. We need to back it up with actions rather than just words. We need to have mental health checks provided to carers. We need mental health first aid in our community. We need all of us to be empowered to address mental health issues when they arise. We have a responsibility to help carers like Beverley Eitzen. We have a responsibility to look after people like her son Peter. We need to change the system so that it works for people, not against them.

Yes, there must be checks and balances, but these cannot be based on the strict guidelines of a diagnosis. People living with a disability cannot be neatly divided into categories for our convenience. Their needs are varied and individual but above all they are needs, and we need to lend and enable more support and services for carers and those who have a disability not just because it is the hallmark of a civilised society to do so but because we must ensure that we do everything in our power to avoid another tragic circumstance like that of Peter Eitzen's death.

The Hon. A. BRESSINGTON (12:00): I also rise to support the motion of the Hon. Kelly Vincent, and to commend her on her consistency and persistence in bringing forward issues of the disability sector. I would like to start with two quotes: first, 'societies are judged by how they treat their most vulnerable', and, second, 'societies get the government they deserve.'

There is no doubt in my mind that we have an entire generation of people who believe that this is how government has always been, that this is how these systems have always been run. I can speak from personal experience in saying that that is not true. I had an older brother who had severe spina bifida, and when he was born my parents were basically told that he would never be any more than a vegetable. But he proved them wrong, although by the age of 14 he had had both of his legs amputated to the hip because of recurring instances of gangrene.

However, my parents never once had to fight for a service for him. In Queensland, he was able to go to a respite centre called Montrose where they provided him with education, living skills and support. He could go there for a month at a time and then come home for two weeks to be with his family. He received the medical attention he needed and my parents got the education they needed to be able to care for him in the best way possible.

I also had a niece who was born with craniosynostosis, which is where the skull does not expand with the brain. She lived for 18 months. Again, my sister did not have to struggle for services with this little baby. She did not have to struggle for the support that we are seeing parents struggle for now.

I would like to make the point that just after the death of Peter Eitzen hit the news I was contacted by a person in the community who had tried desperately to support this family, the mother and the little boy. I was told that in a very short period of time—from memory I think it was in a two-week period—Beverley Eitzen had contacted the former minister, Jay Weatherill, six times begging for help, and was told that there was nothing that could be done. After hearing this from the minister himself, or from his office, that there was nothing they could do to help, no wonder this mother had a breakdown, or a mental condition at the time, feeling so desperate, isolated and hopeless that she felt there was no other option—no other option for her, her family or her son—other than to put an end to this and suffer the consequences.

We can stand in judgement—and many people do—when we hear about parents, mothers, taking the lives of their children, but in this particular case I agree with the Hon. Tammy Franks that this falls in the lap of the government and its one-size-fits-all approach, its diagnosis versus needs approach to disability and mental illness. One size fits all has been proven time and time again not to work, and at some point in the policymaking and criteria setting of assessment for conditions such as we are discussing here today, the penny has to drop with government that the state is comprised of real people, real human situations, and running the state like a corporation is not workable. The people deserve better from their government.

I have no doubt that when the government responds to this motion we will hear how much the government has put into the disability sector, what reforms they have made, and how hard they have worked to move forward to support the community. In actual fact, we hear that all the time, and it is getting to be like water off a duck's back, because if the reforms that you make and the trouble that you go to are not hitting the mark, why bother? Why bother?

If you are not going to listen to the needs group that is saying what it is they need to be able to cope and you are not going to recognise that there are many conditions that we cannot diagnose that would come under the umbrella of a disability, and be able to take some sort of elasticity and pliable approach to offering support for these children and their families, then do nothing, because this whole approach of appearing to do something quite frankly is wearing thin with many people.

We need to develop policies and approaches that do address the problems and do hit the mark and do actually produce outcomes. I am sure some of us in this chamber remember what the word 'outcome' means. Not too many of us, perhaps. In saying that, we also have to understand that situations with families that could once provide the support for parents with children with disabilities have changed dramatically. Everybody is busy. We have a situation now where mostly both parents in a family work, which means that the brothers and sisters, and nieces and nephews of the people dealing with these children with disabilities are all working full-time and raising their own families—quite a different situation to what it was some 40 years ago.

That means that the people dealing with these problems are even more isolated than they were. It is on government's shoulders to get this right and to get it right soon, because this is not going to be an isolated incident. I remind members that some months ago I raised the exact same issue about a condition that was undiagnosed or unrecognised in South Australia called PDD-NOS. That turned into a football between federal and state government, not about what this state government could do to ease the burden of parents with children suffering from that particular disorder; no, 'It is not our responsibility, it is the feds and we are having a ministerial council discussion on this and we are going to wait and see what the federal government does.' Not good enough!

On that note I leave this. As I said, I commend the Hon. Kelly Vincent for her persistence. I hope and I know that she will continue to do this, and one day maybe guilt and shame this government into taking its responsibilities to the people seriously.

The Hon. CARMEL ZOLLO (12:08): I rise to respond on behalf of the government. I know I am joined by all in the chamber in acknowledging that the circumstances of the death of Peter were a great tragedy to the Eitzen family. I also take this opportunity to reinforce the Hon. Kelly Vincent's commendation of the Carer Wellness Centre in the Adelaide Hills for its support to the Eitzen family.

It is a very sad story and one which highlighted the fragility any of us could suffer in trying circumstances. I am certain that no-one in the chamber wants to turn this into a political event. Let me say, the state government supports the intention of this motion, if not the exact wording. Having said that, a number of claims have been made which the government feels should be explained in greater detail.

For some people, the term 'intellectual disability' is the full extent of any diagnosis. In 70 per cent of individuals there is no known cause for intellectual disability, which was the case with Peter, as mentioned by several members already. Suggesting the government leaves families without support due to a lack of official diagnosis is not correct. For the benefit of members, I also wish to correct the record that services for children eligible for disability services are allocated under specific guidelines.

To ensure resources are delivered to those in greatest need, consideration is given to a range of vulnerable indicators. This includes homelessness, access to services, age, health, capacity or age of carer, family situation, impoverished environment and isolation. If there is no specific diagnosis, then children are classified as having global developmental delay and are able to access services. In all country areas, including the Adelaide Hills, Disability Services funds Community Health to provide early intervention for children with global developmental delay.

In relation to carers, a lot of effort has been made to improve services across the state, but we also recognise there is more to be done. Carers are men, women—sometimes even children—from all walks of life who make enormous sacrifices to care for other people, most often family or loved ones. When someone has a mental illness, has a disability, becomes sick or frail, carers selflessly step in to look after them. Plans are delayed, paid work is missed, relationships can be put on hold, and the carer's own health and wellbeing might also be at risk as a result of their caring role. Caring can be an isolating experience.

We also acknowledge that carers often start their caring role with little or no warning. However, the one thing that is a certainty is that whenever or however someone takes on a caring role, they need and deserve support. They need easy access to services and information about what help is available. They may also need training, as well as physical and emotional support. They need all these things long before they reach crisis point.

Carers require services that are accessible, affordable, flexible and responsive to their needs and their loved ones. The state government recognises the significant demand for disability and mental health services. Funding for disability services—yes, as the Hon. Ann Bressington said, we will be placing this on record, and I am going to—has been increased again this year. The 2011-12 state budget contains $56 million in additional funding for services to people with a disability over the next four years. This is on top of an additional $70.9 million over four years committed in the 2010-11 state budget.

The government also announced, in December 2009, an injection of an additional $31 million over four years to give disability services extra capacity to respond directly to families currently struggling with caring for a family member. The funding is being used to provide more respite and day options services, personal support and therapy services to prevent crises and improve responses to emergencies. It will also provide more than 162,000 hours of support each year to more than 250 South Australian families.

At the moment, there are 213,700 carers in South Australia; 60,000 of these are primary carers. Carers in South Australia make up almost 13.5 per cent of our population, with primary carers making up 28 per cent of our caring population. In addition to state funding, in 2010-11, the jointly commonwealth and state-funded Home and Community Care (HACC) program provided approximately $11.2 million for respite to carers of older people and younger people with moderate, severe or profound disabilities.

The Adelaide Hills Wellness Centre received $283,300 in funding to deliver services to almost 250 recipients during 2010-11. The South Australian Carers Recognition Act 2005 and the Carers Charter came into operation on 1 December 2005, and the state government is working closely with the commonwealth government to deliver the National Carer Strategy. Both are significant in relation to recognising and raising awareness of carers across our nation. The Department for Families and Communities works closely to ensure that, where carers are seen at risk of mental illnesses (such as depression or anxiety), they are referred to appropriate healthcare professionals, often with the assistance of SA Health.

The circumstances of the Eitzen family are extremely sad, indeed. I am told that the commonwealth, Disability SA and non-government agencies delivered respite services and support both in and out of the home to the family. I have no doubt, however, that the support provided by family members was incredibly important, but the assertion that this was the only support provided, I have to place on record, is not accurate. Nevertheless, a terrible tragedy occurred that will no doubt impact on this family well into the future—for the rest of their lives. That is why this government has made delivery of vital services to families dealing with disability a priority. I again place on the record that the government supports the intention of this motion.

The Hon. K.L. VINCENT (12:17): I would like to begin by thanking all honourable members who contributed today: the Hon. Ann Bressington, the Hon. Carmel Zollo, the Hon. Stephen Wade, and the Hon. Tammy Franks—forgive me if I have missed anyone. I think we can all agree that it has all been of quite a high standard.

I would like to echo a few words that we have heard here today. They are words that I often hear in my day-to-day work: turn down, shut out, frustrated, disappointed, screaming out for help and feeling like no-one can hear you. These are sentiments that I hear echoed every day and that I think, even though not enjoyable, we should all hear until changes are made to make those words unnecessary in our day-to-day lives. As the Hon. Ms Franks put it, what has happened to the Eitzen family is an unbearable tragedy and insulting to our society, but the really unbearable tragedy, I think, would be if this government did not take immediate action to stop this from happening to another family. As I said when introducing this motion, it is only a matter of time before it does.

I would like to reiterate the fact that just after a story on the news (not about the Eitzen family but, in fact, another family who went through the same situation previously) my office phone rang and it was a constituent, who also happens to be a dear friend of mine, who told me that she and her friends—who are also family carers—had made a pact that, if one of them was diagnosed with a terminal illness, the others would make sure that their child went first because they truly believed that their child would be better off dead than on the doorstep of this government. While that is a very emotive statement, coming from the mouth of a family carer I think it really means something.

We have heard a lot today about the importance of caring for family carers, not just parents but brothers, sisters, cousins, grandparents and anyone else who is undertaking this incredibly important and onerous role. Of course, this motion is not just about that: this motion is not just about stopping carers from harming people with disabilities, it is about providing all people with the building blocks to a safe and fulfilling life. This motion is about human rights.

Imagine waking up every morning with the first thought in your head being, 'I wonder whether I'm going to get through the day today, both physically and mentally,' or perhaps even worse, thinking to yourself, 'Can I really face going into the bedroom next door and telling my child that I can't take care of them anymore?' This is the real unbearable tragedy—that we are expecting our families in our society to go through this.

We have heard from the Hon. Ms Franks about the importance of a national disability insurance scheme. As I have previously, I would like to reiterate to this government the fact that I believe it inevitable that the government makes the decision to move towards a national disability insurance scheme. At present, it is often said (and I certainly echo this, I think, very clever use of words) that it is a postcode lottery for people with disabilities in South Australia and, indeed, in other states: what you get can often depend on where you are, and that is simply not right; human rights know no bounds, particularly not geographical bounds.

I have, since introducing this motion, met with Dr Maria Tomasic, who I mentioned in my speech when moving this motion. She is one of the psychologists who dealt with Ms Beverley Eitzen after she made the tragic decision she did towards her son's life while she was suffering her episode of mental illness. Dr Tomasic echoes and supports my call for instating mental health checks and home visits with psychologists at a time when a person with disability is also getting a visit from their caseworker.

Dr Tomasic has indicated to me that she would echo my call for a psychologist to visit with that caseworker every three to six months to check up on the family. So that just goes to show that this is not just me sitting here having a whinge, whine and a carp; this is something that the psychiatry profession itself is behind, recognising the importance and the ramifications of such visits.

As the Hon. Ann Bressington said, people often think that the government simply takes care of people with disabilities. I can tell you that people are, indeed, shocked when I tell them the simple fact that 20 per cent of people in Australia are living with or caring for someone with a disability. This just goes to show that we are not campaigning actively enough around the far-reaching impact of disability and the need for change in this area if the general public is this unaware. This needs to be change also.

The Hon. Ms Bressington also used the word 'begging'. Again, this is another word I hear often in my day-to-day work; in fact, not just in terms of the government but directly to me. I hear the words, 'Kelly, I am begging you,' and that is not right. People should not have to beg to get enough oxygen to survive the night, they should not have to beg to get a weekend of respite to get a rest from their violent child with autism. No-one should have to beg for these basic things which provide us with a basic standard of living.

Ms Bressington also talked about government reforms in disability and the rhetoric associated with them nowadays being something like 'Water off a duck's back' and 'Why should we bother?' Well, I think I have already reiterated why we should bother. We are not talking about a cute little disability issue here that impacts only a small group of people: we are talking about the future of our society and we are talking about human rights.

Of course, we have also heard from the Hon. Ms Zollo that there was no known cause for Peter Eitzen's intellectual disability. But there certainly was a cause for his death, and that was the lack of support provided to him and his family. We have heard that children without a more well-known or generic diagnosis are often given the label of 'global developmental delay'. My understanding from what I have heard from constituents in this regard is that children with this diagnosis are still eligible for fewer services than those with the more well-known and well-understood conditions such as autism. I am heartened somewhat to at least hear the Hon. Ms Zollo acknowledge that we have a long way to go. We certainly do so.

Motion carried.

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