CARERS (RECOGNITION) BILL 2010
Debate resumed from 21 April 2010.
Mr ANDREW CONSTANCE
Agreement in Principle
(Bega) [4.38 p.m.]: I speak on behalf of the Liberal-Nationals on the Carers (Recognition) Bill 2010. I acknowledge Laraine Toms from Carers New South Wales, who is present in the gallery this afternoon. I acknowledge that Laraine has been instrumental in advocating on behalf of carers to both the Labor Government and the Liberal-Nationals Opposition for the passage of such legislation. The bill was introduced by the Government because on 12 March 2010 the Liberal-Nationals introduced their Carers Recognition Bill 2010 and although I recognise that they are two different bills, in essence they achieve exactly the same result.
When I introduced my bill on 12 March I made reference to the difficulties and challenges that carers around the State face. There is no doubt that we test the heart of our community with the response by Government to community needs and the recognition of carers. For too long in New South Wales both sides of politics could have done better in recognising the enormous contribution that carers make. In this spirit of bipartisanship we will not oppose the legislation introduced by the Government in response to the Liberal-Nationals' bill. I hope that in the same spirit of bipartisanship all members of Parliament will get behind legislation that better supports and recognises the role of carers in New South Wales.
Ever day some 750,000 carers across the State provide care, love and support to a vulnerable member of the community. I also note that carers provide support and care not just to loved ones but also to the wider community, and also support to Government. The economic contribution of carers in this State has been recognised by Carers New South Wales as amounting to $10 billion in unpaid care. It amounts to about $30.5 billion nationally. This is an enormous contribution and yet as a society we are not giving enough back in return for the care that is being provided.
On 12 March I said that I had hoped the Government would in a bipartisan way support the legislation that we introduced. Unfortunately that was not the case. The Government indicated in recent weeks that it would oppose the bill, but having said that the Government has brought forward its own legislation. In that regard it is very pleasing to see a carers charter in the Government's legislation that sets out a number of key provisions that I will refer to shortly. It also establishes an advisory council to Government, which one would hope would provide direct input into government decision-making and bring about better accountability in the way in which government agencies treat carers in New South Wales. As I indicated earlier, I will seek to amend that advisory council process and strengthen it so that there is direct input from primary carers. In doing so I recognise that the Government has put an advisory council in place similar to that which was contained in the legislation we brought forward on 12 March 2010.
When I introduced the Carers Recognition Bill 2010 in March I made specific references to a number of individual circumstances involving carers in New South Wales. It is important to recognise the enormous challenges that beset carers in their everyday lives. All too often as we went around the State conducting carers forums over the past two months—in my capacity as shadow Minister for Disability Services, and Ageing, and Kevin Humphries in his capacity as shadow Minister for Mental Health, and Aboriginal Affairs—carers everywhere spoke of the challenges they face in trying to enjoy the same quality of life as the majority of people in society. All too often we heard of instances of social isolation and financial hardship, and all too often we heard of the difficulties associated with carers who are ageing. Too often carers have to fight the system of service provision that is designed to assist the vulnerable person they are caring for. All too often we saw and heard about the challenges and frustration people have in dealing with service providers, particularly government service providers. We have plans to improve on that beyond the carers recognition legislation. The bill is a first step. This is an evolutionary process: the legislation can be built on into the future.
We need to make the service system more responsive and more in tune with the mindset of carers around the State. We met one carers group at Gunnedah that had some wonderful ideas and initiatives that they wanted to bring forward, but they were getting no response from Government about how they could improve services for carers in Gunnedah. There has to be a way forward by allowing carers to have input into the decision-making of Government so that rather than have a blanket policy approach around the State we can look at individual communities and get local decision-making back into the process. We have to devolve decision-making back into local communities so that carers can respond to the unique circumstances they might find in their country town or suburban community and be able to better care for the person for whom they have responsibility, and also improve their own quality of life.
We heard from carers in towns such as Dubbo, Maitland, Kiama and Queanbeyan. It was great to be able to work closely with a number of key people on the ground in organising those forums. I again acknowledge the work done by Carers New South Wales to promote consultation on the legislation. Whilst that consultation was designed around the Liberal-Nationals' bill it will ultimately benefit the Government's bill. During the past couple of months since the introduction of the bill the Federal Government has also introduced carers recognition legislation. I hope that out of that process we will see much better outcomes in relation to the financial welfare of carers.
All too often we heard of the many financial challenges that carers are facing. I am alarmed at the number of instances of carers being so financially stricken that Government will be required to step in to deal with some of their hardship. In particular we heard of an instance of people's great concern about an increase in electricity prices. I do not want to hear more stories such as those I heard at Bathurst recently where carers are doing it so tough that they are unable to turn on the heating in their homes because of the increase in electricity prices. I flag that because it is vital that both the State and the Commonwealth look closely at the costs of providing care and, importantly, that they look at the impact of some utility price rises on carers.
As I said when introducing the Liberal-Nationals' bill, it is worth noting some figures produced by the Australian Bureau of Statistics. Forty-four per cent of all carers are of workforce age and not in the labour force, compared with 34 per cent of the total population. The gross household weekly income of 41 per cent of all carers is less than $453, compared with 28 per cent of the general population. It is also important to acknowledge the additional costs associated with caring—everything from medical costs to transport costs. Kevin Humphries and I heard firsthand about those costs. Those things impact financially on carers. The average income for carers is more than 25 per cent lower than it is for non-carers, and it is estimated that carers lose earnings in excess of $4.9 billion a year.
Through the introduction of national and State legislation we will establish better ways to support carers financially in their role. That is against a backdrop in which carers in New South Wales alone are providing more than $10 billion worth of unpaid care. State and Federal governments must address some of these financial hardship issues. I place on the record the concerns of members of the Liberal-Nationals Coalition relating to ageing carers. Many carers in our community who are aged 70, 80 or 90 are caring for adult children with mental illnesses or disabilities. They are concerned as there is no future security for those for whom they are caring. We must put better structures in place to support ageing carers.
Some ageing carers are happy to continue caring for their loved ones for the next five or 10 years, but they want to know whether they will receive support in the future and whether their loved ones will receive guaranteed support services, for example, State management, guardianship, finances, and the like. The right structures must be put in place to support ageing carers. This legislation will implement an important assessment process. Carers should not reach crisis situations before they receive support for themselves and their loved ones; they must receive adequate responses from the Government.
I refer, next, to disability services. It is inhumane and unacceptable to think that all too often in New South Wales one has to declare one's child homeless in order to get the Government to provide the necessary services. Carers go through an enormously heartbreaking and inhumane process when they make the difficult decision to relinquish to the State responsibility for caring for their loved ones. We must address that issue and tackle it head on when we are making changes to our support system. When dealing with these support systems carers often are frustrated, as they have to go through different people to gain entry to and support from the Government. Carers fight hard over a long period in order to gain such support.
In our travels around the State many carers raised concerns about the lack of supported accommodation for people with disabilities or mental health issues. Carers are worried about the lack of supported accommodation throughout the community. According to the Australian Institute of Health and Welfare, about 8,000 disabled people in this State require supported accommodation. In 2008-09 the Government's register of disabled people in this State revealed that 1,771 people applied for supported accommodation, but only 64 people, or fewer than 4 per cent, were given a place. Carers in particular are worried about what the future holds for them and their loved ones. We must ensure that the right processes are put in place to better support people through the service system.
Over the next 10 months the Liberal-Nationals Coalition will announce some of its proposals in the lead-up to the next State election, which hopefully will assist carers and those for whom they have responsibility and improve their quality of life. This type of legislation will ensure that the health and wellbeing of carers receive greater attention from government. Carers New South Wales provided me with information relating to the Deakin University national survey of carers health and wellbeing. It is important to note the findings of that survey, which showed carers have the lowest levels of wellbeing of any Australian group. More than half reported some level of depression, and one-third were found to be severely or extremely depressed. More than one-third are experiencing severe or extreme stress. Caring does not get any easier with time, and caring compounds the effects of other factors that lead to reduced wellbeing. The survey also found any level of consistent, daily, immediate caring responsibility is sufficient to severely damage wellbeing. Wellbeing decreases the number of hours spent caring increases. The presence of a person in the household who requires care severely compromises the wellbeing of other family members, whether they have primary carer responsibility or not.
That research is incredibly telling. Once an advisory council is in place that issue will require specific attention to detail. I urge the Government to do more in the provision of better support services and, in particular, to address issues of wellbeing and meet the needs of carers. Over a long period Carers New South Wales tried to impress upon the Government a number of key issues relating to social isolation. Carers do not enjoy the same quality of life that we enjoy. Most of us are able to go out on Friday or Saturday nights. There have been a great many marriage breakdowns, high levels of depression, and financial hardship among carers.
I hope that, as a result of this process, we see significant changes that better support, recognise and maximise carers opportunities in this community. We must ensure that carers do not get into crisis situations—an important principle that must be spelt out and acknowledged. This bill was introduced in this House to get us onto a proactive footing in meeting the needs of carers across this State. There are a lot of similarities between the Government's bill and the legislation introduced by the Liberal-Nationals Coalition. One observation that I wish to make relates to the advisory council. As I indicated earlier, I will amend the Government's legislation to ensure that the majority of members on that council are primary carers.
I pointed out earlier that the charter in this bill is pretty much the same as the charter in the legislation introduced by the Liberal-Nationals Coalition. However, a couple of issues are worth noting. When I introduced the Liberal-Nationals bill I said that assessments formed part of the charter. I am glad that the assessment process is referred to in paragraph (d) of the Government's charter. In my introductory speech I said that the assessment process should involve carers establishing guiding principles around the assessment process, and looking closely at how such an assessment process might be managed and worked through. Following the introduction of the bill I received emails from people who expressed concern about the assessment process and about how information might be used throughout that process.
It is important to have well-established guiding principles particularly for the protection of privacy and to ensure no unintended consequences result from the assessment process. Carers aged in their eighties or nineties often refuse to relinquish responsibility of their loved one to someone else. The benefit of an assessment process is to ensure protection for the vulnerable person and the carer. It also enables voluntary carers to request an assessment of issues with which they are struggling. At this stage it is unknown how the assessment process will work. I ask the Minister in reply to outline what consultation process will take place and how the assessment process will be administered. An assessment process will reduce the crisis cost in this State. It is important to note that the proposed New South Wales Carers Charter recognises the valuable social and economic contribution of carers, that the health and wellbeing of carers should be given due consideration and that their views and needs as well as those of the persons for whom they care must be taken into account in the assessment, planning, delivery and review of services. In my experience, particularly in the non-government sector, many service providers proactively engage carers. Obviously, this important aspect of the charter will ensure that government agencies do the right thing.
The charter refers to children and young people as carers and acknowledges that they have the same rights as other children and young people. Specific attention must be paid to reducing the number of children and young people in caring roles. It is important to note also that the charter recognises the individual needs of carers within and beyond their caring role. Over a long period the Government has often considered carers as being nothing more than an extension of service provision to vulnerable people. Carers are individuals who want to enjoy the same quality of life as the rest of the community and to maximise their opportunities. It is important to include those aspects in the charter in order to achieve those goals. Schedule 1 to the bill sets out the particulars of the New South Wales Carers Charter, and the Opposition notes the important wording of paragraph (f), which states:
(f) Carers are to be acknowledged and recognised as having their own individual needs within and beyond their caring role. This acknowledgement and recognition is to take into consideration Aboriginal or Torres Strait Islander culture, age, disability, religion, socio-economic status, cultural differences, gender identification and place of residence.
The Opposition will seek to amend the bill relating to the establishment of the Carers Advisory Council and asks for the Government's support in that endeavour. If we achieve that support, the Liberals-Nationals bill and the Government's bill will be almost exactly the same. The Opposition foreshadows that it will move the following amendment:
Page 5, clause 11, lines 5 to 19, omit all words on those lines and insert instead:
1. Carers Advisory Council is to consist of the following members:
(a) the Minister administering this Act;
(b) such other Ministers who in the opinion of the Minister administering this Act are responsible for the provision of key support services to carers;
(c) persons appointed as members by the Minister administering this Act who in the opinion of the Minister have relevant knowledge of and experience in matters relevant to carers;
2. The Minister is to ensure when appointing members to the Carers Advisory Council that the majority of members on the council are persons who the Minister considers are primary carers;
3. Meetings of the Carers Advisory Council are to be co-chaired by the members of the council who are Ministers; and
4. Subject to this section, the Minister may determine the term of office and remuneration of members in the procedure of the Carers Advisory Council, including the procedure for the appointment of deputies of members.
It is important that carers are involved directly. This in no way reflects on peak organisations or academics who might be involved in the advisory process. It is important for primary carers to be involved in consulting Ministers directly about the challenges they may face. It is important that carers from across the State are engaged. We have heard of differing views about caring in communities with different circumstances. For instance, a carer in Gunnedah and a carer in Coogee have different experiences. The advisory process must be consultative and far reaching. For that reason, the Opposition will move the amendment I have foreshadowed and hopes that the Government will support it in the same spirit of bipartisanship with which we approach this legislation.
I acknowledge all carers, Carers New South Wales and the Parliamentary Counsel, who has drafted the two bills—albeit that they are almost the same. This critical legislation has been a long time coming, but it is the first step. Laraine Toms from Carers New South Wales, who is in the public gallery, is shaking her head. I am pleased that the Liberals-Nationals introduced this legislation and the Government then replicated it in its bill. Ultimately, we are here to serve the community holistically. From this process, it is anticipated that the social and economic wellbeing of carers in this State will improve. International experience, particularly in the United Kingdom, has been evolutionary. I trust this legislation will be the first of many to improve the plight of carers in New South Wales. I believe there is not a member in this House, regardless of political persuasion, who has not seen first hand in the communities in which they live and represent the many challenges that carers face. I hope that through this process carers in New South Wales will be treated with the respect and the dignity they deserve.
Dr ANDREW McDONALD
(Macquarie Fields—Parliamentary Secretary) [5.08 p.m.]: I am pleased to support the Carers (Recognition) Bill 2010. I am pleased also that the bill has bipartisan support, notwithstanding the Opposition's foreshadowed amendment. This is one of the most important pieces of legislation introduced in this Parliament. Very few pieces of legislation directly involve the lives of 750,000 citizens of this State. In supporting this bill each of us in this Parliament will be committing to recognising that the 750,000 carers in New South Wales make valuable and vital social and economic contributions to the community and to the people for whom they care.
Carers most commonly are a spouse or another family member who provides assistance and support to a loved one because of their loved one's need for care. That need may be due to disability, such as mental illness, a developmental disability, substance dependency or other chronic conditions and sometimes just general frailty. I have spent much of my life speaking to carers. My wife was the chair of Mater Dei, which is a school for children with developmental disability. Modern paediatrics is the care and treatment of disability. Children with disability survive at a much greater rate now than at any previous time. At one of the meetings of Mater Dei I attended, a speech was made by a professor of developmental disability who said that the systems in which disability care works best are those in which society recognises disability as being everyone's problem.
It is likely that many in this place will be carers at some stage during their lives. One in three people over the age of 85 has dementia, but one in three people over the age of 85 will be a carer for someone who has dementia. Disability is everyone's problem, and that is why this bill is so vital. The need for care of people with a disability varies from time to time and their needs increase with advancing age. Some people who may require care may be fairly independent and require assistance only with managing their finances or with transport. But others may need constant supervision or support with a range of daily living tasks. Last week in my office I saw a person aged 17 who required two full-time carers to manage her behaviour.
The New South Wales Government delivers a broad range of programs and services to recognise and support carers and the contribution they make to our community. The programs and services are detailed in the New South Wales Carers Action Plan, which was released in 2007. Caring has never been more complex. People with disabilities are surviving longer and often need increased support because of changes in technology. The role of carer often requires very sophisticated knowledge of highly technical equipment that is difficult to use. The bill addresses those issues, which is why it is so important for it to be passed.
The Government's introduction of the Carers (Recognition) Bill 2010 is the next step in ensuring that carers have the support and recognition they require to enable them to continue with their caring role. The bill recognises and supports the valuable social and economic contribution that carers make to the community and to the person for whom they care. It will raise awareness of the role that carers play in our community, ensure that the interests of carers are protected in relation to their caring role and as individuals, and guide government agencies on issues to be taken into consideration in ensuring that the interests of carers are respected when decisions are made and policies are formulated that will affect carers.
The bill's objectives will be achieved through the introduction of a New South Wales Carers Charter and the establishment of the Carers Advisory Council. The New South Wales Carers Charter sets out 13 principles with which human services agencies will be expected to comply. These important principles include recognition of the role and contribution of carers; taking into consideration carers' health and wellbeing; referring carers to appropriate services; taking into account in the planning and delivery of services the views and needs of carers, together with the views, needs and best interests of the person being cared for; and recognition of the additional burden that certain carers face, including young persons and carers in rural and remote areas. The charter referred to in the bill will be a strong and comprehensive instrument that will increase awareness of the role that carers play in the community. It will guide government agencies in the delivery of services and support to carers.
The charter is particularly strong in relation to children and young people who are carers. The charter acknowledges that children and young people who are carers have the same rights as other children and young people. Carers who are children and young people are a hidden category of carers and, importantly, the charter recognises their rights. The charter also states that these carers should be supported in overcoming the additional difficulties and burdens they face. Other important aspects of the charter include its recognition of the diverse needs of carers, which may be influenced by factors such as their culture, place of residence or age. Another important aspect of the charter is that it articulates the importance of ensuring that carers will be able to access the services they require, and it recognises the importance of carers being able to make choices in their caring role.
The bill has been drafted so that the charter will have broad application to all agencies within the New South Wales public sector. This includes statutory bodies that do not represent the Crown, such as the area health services, which provide a range of important services to carers and those in their care. The bill provides that all public sector agencies will be required to take reasonable steps to ensure that their staff and agents have an awareness and understanding of the charter, to consult with bodies representing carers when developing policies that impact significantly on carers, and to ensure that their internal human resource policies are developed having regard to the Carers Charter. Additional obligations will apply to a subset of public sector agencies that provide services directed at carers or persons for whom they provide care. The additional obligations are that the agencies must ensure that they take action to reflect the principles of the charter and report annually, through annual reports, on their compliance with the legislation.
The second important part of the bill is that it establishes a new Carers Advisory Council to give carers a voice on major legislative or policy proposals that impact on carers. The advisory council will be tasked with reviewing, and making recommendations to the Minister about, any legislative or policy proposals, or other matters having a significant effect on carers that have been referred to it. Members of the Carers Advisory Council will be appointed by the Minister and will include representatives from key carer groups and other representatives of carer interests who have recognised expertise on issues affecting carers, such as academics. The functions and composition of the Carers Advisory Council have been modelled on other councils that provide advice to Ministers and are intended to provide a structure that enables the council to operate effectively and efficiently in the formulation of independent advice and recommendations to the Minister.
The New South Wales Government has a strong record of investment in services to support carers and those for whom they provide care. I was involved in the work on developmental disability in 1989 when the major support given to carers was developmental disability teams that were removed from Health to the Department of Community Services. The Department of Ageing, Disability and Home Care is a creation of the Labor Government. The New South Wales Government's recent investments to improve services for carers include an additional allocation of $1.3 billion over five years under Stronger Together, which is the Government's plan for disability services in New South Wales. The allocation will strengthen support provided to families, carers and people with a disability and includes more than $69 million in additional funds for vital respite services to give carers a break from their caring role when they need it.
For carers of people with a disability, this support includes more flexible respite places and additional centre-based respite. As recently as last week I was speaking to Anna-Maria Wood of the Macarthur District Temporary Family Care centre at Minto about precisely those services for people with a disability. Anna-Maria has been working with me in the field of disability in Macarthur for more than 20 years. She is well qualified to say that services for carers have improved significantly over that time, notwithstanding the substantial increase in the demand for support of carers who provide care for people who have a disability. It also includes the introduction of Teen Time services, which provide after-school and vacation care services for parents of secondary school students with a disability. The Teen Time services are vital because they are designed to support carers in their pursuit of employment and study.
The New South Wales Government currently invests more than $260 million annually in services that provide respite for older people and people with a disability. This allocation includes more than $125 million in disability respite services and more than $140 million in respite centre-based day care and social support services through the Home and Community Care Program. In 2009-10 the New South Wales Government will spend more than $7 million on the New South Wales Family and Carer Mental Health Program. The program will provide a comprehensive range of supports and services for families and carers of people with a mental illness. That will be achieved through strengthening existing partnerships between families and carers, non-government organisations and mental health services. This is a significant and genuine investment that supports families and carers of people with a mental illness by responding to their needs.
The Government Carers (Recognition) Bill 2010 builds on this investment as well as the broad range of other programs and services being delivered through the carers action plan to support and recognise carers. This bill is a comprehensive legislative response to the needs of carers. It includes a strong Carers Charter and an effective Carers Advisory Council. It applies broadly to all relevant public sector agencies, including those that do not represent the Crown, such as area health services, and it applies more stringent requirements to agencies that have a direct involvement with carers and the people they care for. This is an important bill for the people of New South Wales. I am proud to commend the bill to the House.
Mr KEVIN HUMPHRIES
(Barwon) [5.20 p.m.]: I thank the Parliamentary Secretary for his bipartisan support for the Carers (Recognition) Bill 2010. It seems like we have been here before. It is great to have Carers New South Wales represented in the gallery today. Members might think that Laraine lives here, but I welcome her back. At the end of last year we gave the Government notice that we intended to introduce the Carers Recognition Bill. Since then, as the shadow Minister indicated, the Government has introduced its own bill. The aim was always to elevate the position of carers in New South Wales in terms of their status, recognition and, most importantly, wellbeing. Groups that were consulted and played a key role in putting this bill together included the Mental Health Association, the Association of Relatives and Friends of the Mentally Ill [ARAFMI] and the Schizophrenia Association. I will put some comments on the record on behalf of ARAFMI, which comprises friends and relatives of those living with mental health issues, because we still need to deal with some issues.
While the bill aimed to target carers and elevate their position, it would also lay a framework that could be built on in the future for carers, people living with disabilities and those living with mental illness in New South Wales. Those people are some of the most vulnerable in our community. We welcome the Government's support and the comments made to date. As we moved around the State, the shadow Minister, the member for Bega, colleagues and I always said that we welcomed bipartisan support for the introduction of a Carers (Recognition) Bill and, most importantly, a carers charter because New South Wales was lagging behind on that front. I will not repeat the statistics mentioned by the member for Bega, but some key points came out in our discussions. One point was that carers in the community want to be front and centre in any decision-making that affects not only their lives but also the lives of the people they care for. Literally hundreds of thousands of people are caring for people living with disabilities in New South Wales but their voice is not always heard, or is not always encouraged to be heard. That was the idea behind developing a charter.
We know that if people are more involved in the decision-making process at a community or grassroots level the results of that decision-making usually, and most likely, lead to a much better outcome. The days of governments telling people what they will get, and that is the end of the discussion and their expectations, are gone. The idea for introducing the bill and the New South Wales Carers Charter was to put the people who are delivering services or who are intricately involved in service provision at the front of the decision-making process to ensure that the vulnerable people are not taken for granted by governments and large institutions, which often happens. The fact that we have got to this point is a success. This legislation will lay a foundation for the future for carers in New South Wales. Another point that was made during the consultation process was not only the involvement of the community and volunteers but also the issue of ageing carers, which the shadow Minister alluded to.
A considerable percentage of carers are older people. Without doubt, the number one issue for ageing carers is the lack of accommodation options for their loved ones. We believe that this legislation will lay the framework for this issue to be dealt with much more seriously in the future. Some community groups support pooled funding to provide assisted accommodation for people living with disabilities and mental health. The Government is not exploring all the options. Whether care is provided by a family member, a loved one, a non-government organisation or a government agency, everyone agreed unanimously that they want more innovation and flexibility in the delivery of services. They want to be more innovative and flexible in terms of looking at community-based accommodation options, supported by the Government, for people living with disabilities and mental health. I believe we can derive something from this legislation.
I believe we are only at first base in a 10-step process; accommodation must be a driving issue in the next step, particularly to support ageing carers. In terms of mental health, it was clear that many carers of people living with mental health issues have basically reached the end of their capacity to care and are very frustrated. I believe that is reflected in a higher level of homelessness, the number of people living with co-morbidity issues, and increasing dysfunction that has resulted in some people ending up in jail. Too many people living with mental illness are either homeless or incarcerated. That is based on the premise that many of their carers are worn out and no longer have the capacity to look after their loved ones. Another issue relates to communication, particularly when people living with mental illness are discharged from hospital. The protocols relating to primary carers and carers generally are still not tight enough—I have a letter from ARAFMI to illustrate this point.
Many people are being discharged back into the community with little consultation or communication with their carers. That leads to safety issues and dysfunction. People have entered the system in good faith, knowing that they would be looked after and will potentially get back on track. However, the system falls down because the level of consultation and communication with carers that is required is not maintained. We wanted to establish a ministerial council to protect people's rights and to encourage them to speak up and make a contribution. I note that the Government has taken that on board. Any advisory group—a Coalition government would still put a ministerial council in place for other reasons—must be largely made up of carers. It would be dominated not necessarily by agencies or non-government peak bodies but by carers.
The point is that government-funded agencies or groups are often at the behest of the Government and are not necessarily able to speak freely, although they do fantastic work. There must be representation front and centre from those who actually deliver the services on the ground. I note that the Government has also taken that on board. ARAFMI, which is the mental health carers group in New South Wales, wrote a letter to Coalition members, including the shadow Minister, about this bill. The letter stated:
In the first place ARAFMI notes that the Charter does not specifically take account of the episodic nature of much mental health caring and the unpredictability of the needs to the mental health carers loved ones from day to day. This has a very significant impact upon the carer's capacity to plan their life or attend to routine activities such as work from time to time. It can also be very traumatic personally for the carer.
Worse for the mental health carer is the fact that their loved ones may sometimes lack insight into their illness and so be resistant to anyone attempting to help get them treatment. If the carer wants them to have treatment which they do not believe they require the consumer will sometimes attempt to exclude their carers from information about the treatment process in order to help frustrate this treatment.
So what are we asking the Government to do? The Mental Health Act has recently been amended to try to remedy this situation by creating the role of the primary carer, which has the potential to resolve some of these issues. It allows a nominated carer to receive otherwise confidential information about the treatment of the person they are caring for and prevents the patient from excluding a carer if the authorised medical officer or director of community treatment believes they lack the capacity to make such decisions or their action would expose any person to unnecessary risks. However, some of this legislation is unclear about the extent of the carer's rights and a more explicit description of the primary carer's rights would be welcome.
In addition, ARAFMI would also be very keen to see the Charter mention the right of carers of all kinds to retire from the caring role when they become too aged and infirm to continue.
In practical terms this requires the State and/or Commonwealth governments to step in before their situation becomes unsustainable and transition their loved ones into appropriate, supported accommodation in the community, funded partly or entirely by the State and/or Commonwealth governments.
I note that many carers are prepared to pay themselves. The letter continues:
There would be some budgetary implications with the adoption of such a law, however, the alternative is inhumane and inequitable. All too often carers are condemned by lack of facilities to keep caring for their loved ones until they are physically incapable, at which point their unfortunate loved ones may be transferred into inappropriate acute hospital beds or aged care facilities, (in spite of their actual age or support needs) causing unnecessary suffering to the people in need of care and placing an unnecessary burden on these facilities.
As I said earlier, they end up on the streets or in jail. The letter continues:
Ms CLOVER MOORE
In the case of people living with severe and persistent mental illness, support such as that offered by the Housing and Accommodation Support Initiative (HASI), to help people with a severe psychiatric disability maintain independent or semi-independent living arrangements also needs to be greatly expanded to meet the needs of those whose carers cannot continue their supporting role (or who have no carers at all). Homelessness is too often the alternative and with it much poorer physical and mental health outcomes.
The lack of appropriate support and ultimately residential alternatives for many people being cared for by their families in private homes is unacceptable from a humanitarian perspective, making the expansion of arrangements to help support people in the community a priority for reform in this sector. Appropriate support in the community can greatly reduce pressure on expensive acute facilities and provide much better outcomes for the people needing long term care. NSW should not be prepared to accept a shortfall in the necessary facilities or large numbers of people with unmet needs in this area.
ARAFMI would therefore warmly support the addition of such a principle to the Charter and would greatly value any opportunity to provide input into policies to ensure that appropriate services and facilities are made available to allow carers to end their caring role before death or age related incapacity obliges them to do so.
The provision of such alternatives would also greatly reduce the mental suffering of many carers who are approaching this time in their lives with no apparent alternatives available to them or their loved ones.
I would be happy to discuss the issues in this letter further with you, should you wish to do so.
(Sydney) [5.32 p.m.]: I strongly support the Carers (Recognition) Bill 2010, which recognises in legislation the vital and often challenging work of carers. The bill will improve support for carers and ensure that they are involved in decisions that affect them. Similar legislation exists in Queensland, South Australia, Western Australia, the Northern Territory, the Australian Capital Territory and the Commonwealth. The bill defines a carer as someone who provides ongoing care to a person with a disability, mental illness, terminal or chronic illness, or who is frail. The bill introduces a Carers Charter of Principles with which certain government agencies must comply. This includes considering carers' health and wellbeing; that carers should have the same rights, choices and responsibilities as others; the need for timely, responsive, appropriate and accessible support; and the need to acknowledge and recognise their individual needs within and beyond their caring role.
The bill creates a Carers Advisory Council, made up of carers and their representatives, to provide recommendations to government and work to advance carers' interests. Carers' contributions go beyond the assistance they give to the person they care for, be it helping someone feed, bathe, dress or administer medication, or the emotional support they provide to vulnerable and often isolated people in our community. Carers also contribute to the wider community by reducing the burden that would otherwise be placed on our already stretched health system. In fact, the annual saving to New South Wales taxpayers has been estimated at $10 billion. This contribution is often at the expense of a carer's own health and economic wellbeing. Carers in the inner city understandably share widespread support for legislative recognition of their vital role, as a few examples will show.
One woman who facilitates meetings with carers of people with a mental illness said that carers always feel they have to be superhumanly patient, and have to sacrifice everything, including their rights, to ensure the needs of the person they care for are met. She said that while their lives are deeply affected, she is always amazed by their ongoing resilience and patience for their loved ones. A carer support worker in aged care who is one of my constituents pointed out that legislative recognition could help protect carers who sometimes have to make quick decisions about the care of their loved ones that could have legal implications. A woman who has been dealing with breast cancer herself is also the mother of a child with autism, and she has devoted time and effort to getting the best possible educational support for him because she knows that this will make the difference to his need for care in future. Amazingly, on top of this, she also campaigns to get better disability services.
I also think of a 76-year-old woman who has been coming into my electorate office since 2002, seeking help with respite care for her adult son, who she alone cares for 24 hours a day, six days a week—she is able to get respite care for him on the seventh day. She has had to fight each six months or year to get this one day of respite care, and understandably remains very concerned about her son's future when she is no longer here to help him. Another constituent has watched his partner of many years deteriorate mentally, with the loss of continence and the associated embarrassment, caring for her at home until it became too much and he was able to find her a place in an aged care facility where at least he could visit and see her.
The Carers New South Wales president notes in "Carers News" that carers have no grounds to challenge their neglect from public authorities, or to demand basic human rights because Australia has no Bill of Rights. Legislative recognition will help ensure carers are not treated as just a resource but that they will get opportunities for education, social life, work and community participation. Carers New South Wales has proposed establishing a parliamentary friend of carers group to inform members and encourage action to value and support carers, and I support this approach. I acknowledge the courage and devotion of so many carers, and I support this legislation to help improve their quality of life. I commend this bill and I commend the initial bill introduced by the shadow Minister.
Mr JONATHAN O'DEA
(Davidson) [5.37 p.m.]: Having supported the Carers Recognition Bill 2010, introduced by the Opposition, I do not oppose this recently introduced Carers (Recognition) Bill 2010. This is an important bill that acknowledges carers who work tirelessly for others without the recognition they deserve. Caring for an ill, disabled or elderly person is one of the most difficult jobs one can perform. Carers sacrifice their own desires in order to devote themselves to helping another get through the basic everyday tasks able bodied people take for granted. This bill is a welcome and important initiative and has been the subject of numerous recent correspondence from my constituents. However, governments at all levels must back words with actions to ensure carers receive the financial and emotional support they need.
In May 2009 the Commonwealth Standing Committee on Family, Community, Housing and Youth released a report entitled "Who Cares ?" which examined how carers could be better supported. It recommended that the Federal Government develop a nationally consistent carer recognition framework, comprising national carer recognition legislation, which complements State and Territory carer legislation, and a national carer strategy which builds on and complements State and Territory carer policies. The bill ensures that New South Wales forms part of this national framework. It has been welcomed by Carers New South Wales, which stated, "This is very exciting news for carers in New South Wales! It has been a long time coming".
Australian Bureau of Statistics data from 2004 indicates that New South Wales has approximately 748,000 carers, 149,700 of whom are the primary carer of an individual. Most of these carers are women and most care for their partners. Not only do carers enhance the lives of those for whom they care, they also make an enormous contribution to the economy. Access Economics estimated that in 2005 informal carers provided a total of 1.2 billion hours of care Australia-wide. If unpaid carers were replaced with paid carers it was estimated by Access Economics in 2005 that it would cost $30.5 billion, with the income foregone due to caring estimated to be $4.9 billion.
A carer's role has a substantial impact upon his or her physical and mental health. Carers Australia, Australian Unity and the Australian Centre on Quality of Life at Deakin University investigated the wellbeing of carers and found that carers have the lowest collective wellbeing of any group they have discovered. The research found that "far more carers, approximately double the proportion found in the general population, have high levels of pain" and that "carers are highly likely to be carrying an injury". More than one-third of carers were found to be severely or extremely severely depressed. More than one-third of carers were found to be experiencing severe or extreme stress. The research also found that caring could be one of the leading causes of depression in Australia. Carers often experience financial difficulties. Following the release of the "Who Cares?" report, the Chair of the Federal Standing Committee on Family, Community, Housing and Youth, Ms Annette Ellis, MP, stated:
Carers have told us they desperately need more financial assistance to cope with the additional costs of disability and caring, as well as greater access to respite for time out of the caring role.
The aforementioned research on the wellbeing of carers found that "carers are almost twice as likely as is normal to worry that their income will be sufficient to meet their expenses". Good intentions must be backed by action. A pat on the back does not put food on the table. Both the Federal and State governments must take seriously the concerns of carers and provide increased support where needed.
Last year I spoke about motor neurone disease in a private member's statement. Motor neurone disease is an extremely cruel disease. What may start as weakness in the hands or feet, a swallowing difficulty, slurred speech or muscle twitching and cramps, eventually develops into paralysis. Patients eventually become completely immobilised and are able to move only their eyes on their own. I mentioned a constituent and sufferer of motor neurone disease, Mr Phil Brady, and his wife, Trish, who provides him with constant care, with support from their children. It is these people, along with many others, who are recognised by the bill. I could mention many other wonderful carers from my electorate of Davidson who likewise are to be greatly admired. I also acknowledge the selfless broader sector leadership demonstrated by various carers in my electorate, including Katrina Clark and Vanessa Browne. "Thank you" to them and others like them.
The objects of the bill are to enact a New South Wales Carers Charter to recognise the role and contribution to our community of persons who care for other persons who have a disability or medical condition, a mental illness or are frail and aged, and to require certain public sector agencies to take action to reflect the principles of the New South Wales Carers Charter when providing services that affect carers. The bill also establishes a Carers Advisory Council, which has been spoken of previously so I will not go into its details. I note that the Government, in the same way as the Opposition's foreshadowed amendment to that council, could have amended the earlier bill introduced by the Liberals-Nationals if it had concerns or suggested changes.
In closing, I commend and congratulate the shadow Minister for Ageing and Disability Services, the member for Bega, and those he acknowledged in his speech, as well as the Government for belatedly coming to the party. I hope the Government accepts the foreshadowed amendment in the spirit that the Coalition supports the bill. The bill provides overdue recognition to people who sacrifice their own wellbeing to support the most vulnerable people in our society. However, Federal and State governments must now back up in their words with concrete action by providing carers the material support they deserve.
Mr GEOFF PROVEST
(Tweed) [5.43 p.m.]: I contribute to debate on the important subject of carers recognition, as contained in the Carers (Recognition) Bill 2010. As members know, I am 100 per cent for the Tweed, which has a large number of elderly people. In fact, we rank second in the State, behind Port Macquarie, for residents aged over 65 years. I acknowledge that the member for Port Macquarie is present in the Chamber. Recently I attended the Tweed Valley kin care, a support group of carers consisting mainly of grandparents who look after children. They do a fabulous job. I am always impressed with their care and dedication, which at times lacks recognition within the local community.
The bill recognises and supports the vital role that carers play in providing selfless support to the persons for whom they care by acknowledging that they are individuals in their own right, with separate needs and rights. As a number of members have spoken in support of the bill I will not reiterate their fine contributions. However, I make particular note that the member for Bega, the shadow Minister, foreshadowed an amendment so that the majority of the membership of the Carers Advisory Council would be primary carers. Carers need that consideration and support. In the Tweed all carers are fairly senior, and they are very concerned about the future.
In know from the Tweed Valley kin carers that a lot of children have issues—either a learning disability, emotional issues or drug dependency. Previously I have spoken about the young kids on the streets of the Tweed, and this is a major concern for them. As they mature, adequate arrangements will have to be made for them. Fortunately, I have been able to assist a number of them, but one matter that should be addressed in the bill is the cross-border issue. I ask the Minister to provide some feedback on this matter. It is significant that a number of kin carers have pointed out that they often take their children—their wards of the State, et cetera—over the border.
If the child is only 20 metres over the border into Queensland and is involved in an incident or an accident that requires transportation by the Ambulance Service of New South Wales to the Tweed Hospital, a distance of 400 metres, a bill for $800 will be incurred. That happens time and time again, even when a person is just on the other side of the street. Another concern is legal recognition of those carers; perhaps the New South Wales Carers Charter will address that. Many carers are grandparents who have taken over responsibility for the child, and some have been awarded that responsibility by the State and the child becomes a ward of the State. Others have assumed that responsibility. In a number of cases the natural parents have appeared out of nowhere many years later, and often that results in a fair amount of legal tussle. The carers need legal protection and certainty, particularly the senior carers. This bill has been a long time coming. Along with those who have contributed to the debate, I support the bill.
Mr PETER BESSELING
(Port Macquarie) [5.48 p.m.]: I welcome and support the Carers (Recognition) Bill 2010. It is extremely important to recognise the role and contribution in our communities of persons who care for other persons who have a disability, a medical condition such as a terminal or chronic illness, a mental illness, or are frail and aged. I acknowledge the Opposition for bringing forward this debate, particularly the member for Bega. It is great that all parties of this Parliament are working together, for once, to try to bring forward some substantial changes to legislation that will be of benefit across the community. As is said, the rising tide lifts all ships. This bill is a great example of that. Both the Government and the Opposition are to be commended for their efforts.
I am sure every member of this Parliament recognises the unique situation in which carers find themselves. Often carers have to look after someone 24 hours a day. It is difficult enough to look after someone for a limited time. As a father and having raised children I know how difficult that is, but having to care for someone 24/7 is especially difficult. Carers need all the support they can get. It is important that we look at respite options and, in particular, the need for short-term respite. I notice that there are a number of recommendations in the New South Wales Auditor-General's performance audit report entitled "Access to Overnight Centre-based Disability Respite". I draw the attention of the House to the second recommendation, which states:
To ensure people with the greatest need receive respite we recommend that ADHC should expedite its current efforts to:
a. direct growth funding to the areas that need it most
Certainly that funding should be directed within regional areas, such as Port Macquarie. I note that $1.6 million has been provided for the Home and Community Care centre at Port Macquarie. That is a combination of Federal and State funding and it has been provided after consultation with the local council. Governments are working together for the benefit of the community. That is much appreciated but more needs to be done to provide respite for carers rights across the State, particularly in regional areas. The Auditor-General's report continues:
b. establish consistent criteria and implement a common approach for prioritising and allocating respite according to need
A lot of long-term respite is offered—one-week or two-week periods—but sometimes all carers need is respite for a day or only an evening, just to get a break from the constant 24-hour care they have to provide. That will enable them to provide a better level of care to the people they are looking after. The report continues:
c. work collaboratively with NGOs to coordinate ADHC and NGO services.
Again, it is important that we keep working together for the benefit of the community. As the member for Tweed recognised, Port Macquarie has the greatest number of people aged over 65 of any electorate in New South Wales. Ageing of carers in our community is a real concern. A number of people have come to my office to express their concerns and the stress and anxiety they feel about the future of caring. Often they provide care for younger males. It is often a son who is being cared for and the mother is getting older and more frail. Often the sons are physically strong and the carer faces a physical challenge in dealing with loved ones. It is hard enough looking after someone 24/7, but to also face physical challenges as well as uncertainty about how they will look after their loved ones as they age is a major problem.
I have a letter from one of my constituents regarding the difficulties she is having. This woman cares for a frail husband aged 83 and her ageing parents. She has not been able to leave her husband on his own for the last six months unless respite care was available. It has been difficult to access services and she is unable to wait on the phone for periods of time or visit government offices. She says it has been difficult to find information about what services are available, although she is very positive about the support received through Carers NSW and the local carer support group. They have no other family to support them. We see that time and again. The report says:
Ageing carers present a growing challenge for government as their capacity to provide care diminishes over time. At least 13 per cent of carers in NSW are over 65 years old. ADHC's ability to plan for ageing is reduced because it doesn't know how old 25 per cent of carers are.
The trauma, strain and financial hardship for carers are evident. I have received a letter from Gillian Devine, which states:
In reference to the Carers Recognition Act being introduced to NSW Parliament.
My son had a car accident in 1988 at the age of 17, leaving him with severe brain injury.
He was in a coma for 3 months and when he came out of the coma he was discharged from the hospital to come home with me and his step-father.
The trauma for myself and his step-father cannot be explained, watching your son fight for his life in hospital and then when at home, watching his life change forever.
My son never received a payout and is in a wheelchair permanently with the use of only two fingers.
This had a big strain on us financially, having to purchase wheelchairs, equipment, drinking cups plus eating utensils and over the years we lost contact with our family and friends and you feel very isolated, because people do not know how to cope when something like this happens. As time went on my husband had to retire from work with illness, trauma related, being part of his sickness and as the years pass, my health is suffering also. We are both in our sixties. I have also had to look after my foster mother for the past 5 years as she has chronic illness and is 84 years old. Just recently she has gone into an aged care facility.
For all the carers which is 750,000 approx this bill is an important step forward in better supporting their needs.
Carers provide a vital service. They save millions of dollars for our community and it is appropriate that we recognise this during National Volunteer Week. They are truly the most giving of the volunteers in our community. When Parliament last sat we heard stories about carers from Alzheimer's Australia (New South Wales) Inc.—Margaret Allen does a terrific job at Port Macquarie; the Schizophrenia Fellowship, with Sheila Openshaw; and Hastings Headway, where Belinda and Andrea do a terrific job. I was there yesterday chatting with them. They are terrific people who give freely of their time. Grandparents as Parents Again was recognised, and I commend Paul Bickford and his crew. This is an important bill and it should be supported.
Mr BRAD HAZZARD
(Wakehurst) [5.56 p.m.]: Obviously as a member of the Liberals-Nationals Opposition I strongly support the Carers (Recognition) Bill 2010. In my period of service as a member of Parliament I have also served as the shadow Minister for Disability Services. During that period I had many opportunities to visit families who were caring for people with disabilities—young people and older people, and those with various health issues. There is no question that carers in New South Wales provide an invaluable service for their family members, friends they support and those that are in need. What I find disturbing is that it has taken so long for the State Government to wake up to the need for some formal recognition of carers.
I well recollect visiting Carers NSW in Sydney and seeing the various activities that are undertaken there. I have to say it is a standout service, but it is also a critical service because so many people who care for those with disabilities feel right from the word go, as soon as they have a child with a disability, that life becomes a massive struggle. They are constantly trying to access services and support. A number of members have spoken about the difficulty of accessing services. Even today, and despite the charter contained in the bill and the fact that the bill is before the House, I dread the fact that the State Government, currently the Labor Government, has yet to connect with the real needs of those tens of thousands of people who are caring for those in need of care.
One of the issues that disturbs me a little is that I often hear numbers being tossed around in this place. We are all very good at numbers in Parliament, but the reality is there are massive numbers, thousands more, who do not register for services because they have given up any hope of getting them. I well remember a visit to a particular family in the Lismore electorate with the member for Lismore, Thomas George. We drove quite a way to an isolated farmhouse where there lived a man, who was in a wheelchair, and his wife. She had been the victim of a late onset disability and was quite incapable of looking after herself. I remember very well the sense of despair in that household and I recollect wondering as we drove away how this couple would ever get the services they needed. They had not even bothered to put their names down because they knew there was almost no chance of getting the support services they needed.
This legislation is a good start and the charter is a good start. I congratulate the member for Bega on introducing his bill, the Carers Recognition Bill 2010. However, unless the Carers (Recognition) Bill is backed up with services it will be nothing more than an empirical statement that—gee whiz—the Government has woken up. It needs to be far more than that. There are differences between the Government's proposed advisory council and that proposed by the member for Bega. I hope that the Government listens seriously to the advisory council, notwithstanding the fact that there are membership issues. The Government must provide the advisory council with new resources and not take resources from services in the disability area that are already stretched.
The Government must ensure that additional money comes through to support this advisory council. Fair dinkum resources must be provided to back up its efforts. There must be accountability and transparency in the Government's response to the advisory council's recommendations. If the council makes recommendations, they disappear into cyber space and there is no response from the Government as to what it is doing, it will be a pyrrhic victory. I understand the problem. It might not be possible for the Government to meet this need for resources, but we need honesty and transparency in the process. People want to know that the Government will be fair dinkum in its delivery of those services.
Pursuant to resolution business interrupted and set down as an order of the day for a later hour.