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

I rise with regret to again have to put a motion to this House concerning ageing parents and careers of disabled children. I put a very similar motion to the House in early 2000 and, sadly, our ageing parents and carers of disabled children are still in crisis or will face a crisis due to the lack of accommodation options for their disabled children. It is a fact that every single member and senator in this place represents someone or many people who are in this crisis. People with a disability generally have symptoms of ageing earlier than the mainstream Australian population. Many ageing disabled sons and daughters are due to retire from their supported employment workplaces which are generally Commonwealth funded. Workers are retiring due to their age or a medical condition or, as they are getting older, they are presenting an OHS risk in their workplace.

There are no transparent service pathways in place to assist ageing people with a disability with their work to retirement plans or to transfer them from work to a day service. Consequently ageing parents and carers are faced with the additional responsibility of having their disabled children at home with them. Supported employment and day services represent a ‘respite’ break for older parent carers from their day-to-day care responsibilities. Having these services available is important in prolonging older parent carers’ wellbeing and their current care arrangements. Many older parent carers also postpone their own needs for aged-care accommodation due to the lack of long-term accommodation options for their sons or daughters. Many older parent carers also postpone their own needs for urgent medical treatments because of the lack of suitable short-term accommodation options or respite for the care of their disabled son or daughter. Grandparents are increasingly becoming the primary carers of their grandchild with a disability. This is particularly a feature in Indigenous communities. Many older parent carers in rural and remote areas see their situation as hopeless.

In rural Australian communities, the ageing demographic is greater than in regional and metropolitan areas due to our younger family members and younger people generally having to leave rural and remote communities to seek employment and educational opportunities elsewhere. Younger members of a family who might have been available to assist their older parents with the care of their brother or sister with a disability may no longer be available to provide this support, simply because they live vast distances away. This of course places extra stress and a greater burden on older-parent carers.

I am fortunate to have Kurrajong Waratah in my electorate. Kurrajong Waratah’s InterLink support coordination service for older-parent carers is currently assisting 230 older-parent carers across the Riverina and Murray regions of New South Wales. The oldest carer is 93 years of age, still caring for her 60-year-old son at home. The average age of those 230 carers is 78.3. Many of these older-parent carers are living with the hope that their son or daughter with a disability will predecease them. A carer in the Temora community has written to me asking:

What do I have to do or where do I have to go to get a ‘funded respite home in Temora?

This comes from a woman who is the carer of her 45-year-old son. She says:

One lady carer of twin boys in our community aged 37 had breast cancer and had to have her breast removed and it has been almost impossible to have the twins cared for. This mum is 68.

Another lady carer for both her daughter and son-in-law now suffers Dementia and her husband is 80. her daughter has now come home to look after them all.

Another carer who is 80 and has a son 44 who is almost blind.

These are only a few scenarios. I could go on and on. There are many more. This carer says:

We have a huge amount of parents and carers looking for respite (often too difficult)

The concern here can be sincerely weighed up by the fact that a dear man who is caring for his disabled daughter, with his wife, had his spirits lifted just because he opened his mailbox and found a letter from me acknowledging the pain that he was experiencing. He had only just had a major operation two weeks before and he was still busy in his capacity as a carer for his disabled daughter.

I have been fighting against this plight for many years. I lay no blame on this current government. I would just like to see the issue fixed, as it should have been many years ago. (Time expired)

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

First of all, to the member for Riverina: thank you for putting this motion on the Notice Paper for us to debate this evening. As she knows—and I acknowledge her concern in this area—many of us in this House, past and present, have had a very longstanding concern about this very issue. The motion that the member for Riverina has put before us is long enough—and I say that with great respect—that we could debate it for hours. If only we could, because it is an issue important enough to involve that sort of debate.

One of the more serious issues facing our community is in fact the future of people with a disability who find themselves living with an ageing parent or parents—usually ageing parent singular. This is not a new phenomenon. However, as our health services and treatments improve, so does longevity for a lot of these people who, decades ago, would never have reached the age they now reach. That is not a criticism, because it is good to see that that is happening. However, communities, and governments of all persuasions and levels need to move on and understand the impact of those health outcomes and what we can do about it.

Within the motion that the member for Riverina has moved, there are a couple of issues mentioned that I would like to talk about generally if I may. One of them was the decision by the former Prime Minister, about 4½ years ago, to set up a package to assist parents with trusts for the future care of their disabled children, which I know the member has had an interest in in the past. Sadly, the take-up for these has been incredibly low, and the best information I can get today is that only around 86 have taken them up in full and 300-odd have made inquiries and sought eligibility criteria for it but have not gone that far. There is definitely some merit in the establishment of these trusts. However, there have been barriers to encouraging people to take them up.

The government has taken some important steps in addressing those barriers. I do not have the time to go through them but one of them has been that, since the 2008-09 financial year, unexpended income from a special disability trust will now be taxed at the beneficiary’s personal income tax rate rather than the highest marginal tax rate. There are other similar decisions that have been taken in an effort to try and make these trusts a little bit more attractive. I know that the government is looking at further changes as per the recommendations of the Senate committee inquiry into this issue. There are definitely merits in the special disability trust scheme but, because of the level of complexity in the scheme and the need for specialist advice, it is unlikely that people from low-socioeconomic backgrounds could actually access them. I know that the member and I have had discussions on that line in the past. Next month the Productivity Commission will begin the disability care and support inquiry which will look at, amongst other things, the possibility of establishing a national disability insurance scheme. Will this fix everything? Probably not. Would we like it to? Definitely. In the meantime I am putting all of my heart’s wishes into the Productivity Commission inquiry coming up with some really good, decent stuff that we can look at seriously—as a community, not just as a government—to try and address these issues.

Some of the other steps that have been taken so far are not enough, but they have to be recognised as an attempt. An additional $100 million in June 2008 went to state and territory governments in capital funding to build 313 new places in supported accommodation facilities. I acknowledge that that has been done. There has also been some funding under the Younger People with Disability in Residential Aged Care Program, which is all about moving young people with a disability out of residential aged care. That is another very legitimate concern that needs to be addressed. There are so many things that we need to do.

Having been involved in this sector for so many years and having had a passion, like many of us do, for trying to find solutions for this sector, my really basic concern is that, even if in a perfect world tomorrow all of this were fixed, there would be a number of these families who would hesitate to take it up. I say that because you know when you talk to them that they need to have faith and confidence. They need to believe and understand that someone other than them can in fact care for their loved child, for the person that they are caring for. I know from my own personal experience in my community that there are a number of families I seriously wish would put their names down on lists to try and get accommodation for their adult child, but they do not. The reason they do not may be complex. I think there is a lot of work to be done in this area. Government can do it. The community needs to do it. We all need to encourage those people in this category to actually believe that it can work for them and to get their names on a list so that we can measure the need. (Time expired)

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

I rise to support this motion and thank the member for Riverina and all previous speakers from both sides of the House who have spoken about this issue constantly. It is an issue on which I have also previously spoken in the House—on at least three occasions over the course of the last 10 years—and one that impacts on many of my constituents in Gilmore. In 1999 I moved a similar motion welcoming the then government’s commitment of over $1.7 billion to the Commonwealth State Territory Disability Agreement to assist the states in their support for carers of people with disabilities. Since then there have been a number of inquiries into disability support, the latest in 2008, reiterating the difficulties under which carers and their charges exist on a daily basis. It is an issue that has been well canvassed, yet the situation is still unacceptable today. According to a government report commissioned in November 2009 there was an unmet demand for accommodation and respite services for 23,800 people in 2005. I wonder what the figure is now. Clearly the matter will get worse rather than better unless something is done urgently.

I know of many carers in Gilmore who are living in abject poverty, with little opportunity for respite. The stress under which they live is soul destroying simply because of the limited options available to them. There is no shortage of evidence, but there is a profound lack of will on the part of all governments to help those least able to help themselves. I recall that following the much vaunted 2020 Summit there was a statement suggesting the creation of a national disability insurance scheme. That is one concept which I would work with the government to support, if it ever gets up. It was a good idea at that time and it is still a good idea today, but we need more than a good idea.

In 2005 the Howard government put in an extra $200 million to assist parents establish private trusts for the future care of their disabled children. Given the very obvious need for intervention that was stated at the 2020 Summit and again through the latest House inquiry, it is a fair question to ask what this government has done so far to progress the establishment of the private trusts. To my mind, the immediate priority has to be the provision of longer term accommodation to ease the pressure on parent carers, especially those who are ageing and perhaps ageing prematurely through want of relief.

The second issue is to make preparations for when the carer dies and the patient is left on their own. What can a highly dependent disabled person do to fend for themselves? It is a thought that must weigh heavily on the minds of the elderly carers and patients. In a submission titled ‘Disability reform: from crisis welfare to a planned insurance model’, the authors, Bruce Bonyhady and Helen Sykes, described the situation as a crisis in care and support—and they are spot on. We are not adequately addressing this chronic problem; we merely continue to sweep it under the carpet. If this government were sincere about easing the plight of thousands of carers and their children then surely there was an ideal opportunity during the period of the great stimulus spend across the country. Would it not have been better to assign some of those billions of dollars to addressing the crisis in the disability services? A crisis is exactly what it is; it cannot be called anything else. Imagine how much accommodation that money could have bought and built while stimulating economic activity at the same time. I know it would have brought considerable relief and gratification to many weary and ageing parents living in the Shoalhaven, Kiama and Shellharbour regions of New South Wales. What is needed is an ironclad undertaking, fully funded and with a specific and measurable time frame, to implement reform; and an accountability process that has the confidence of the public must be put in place to guarantee targeted delivery of funding by the state governments.

This government is predisposed to a centralist role in the areas of workplace laws, hospital administration, education curriculum and global warming, so why not in regard to providing accommodation for disabled children? The crisis is so severe that some children are being accommodated, unsuitability, in adult institutions because there is nothing else. But we have heard all of this before. Now that the global financial crisis is over, I call on the government to divert some of the billions from its schools stimulus package into a crisis that is still with us. Put that money into building accommodation to take pressure off carers. It is a far more humane and compassionate gesture that will help deliver an improved quality of life to these long-term sufferers. There is just one condition: I cannot stress enough the need for recipients to be allowed every opportunity to freely determine their own destiny with regard to the choice of services required. In a statement to the House in early-2008, I quoted a statement by the Parliamentary Secretary for Disabilities and Children’s Services. He said:

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

I hope the Commonwealth and states will now agree to work together to achieve that goal as soon as possible.

Kerry Rea (Bonner, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak on this motion as well. In particular, I would like to make some comments on a great concern that all of us in this parliament share: the need to pay due recognition to the carers of people with disabilities and, indeed, to ensure that this parliament, the government and the broader community acknowledge the immeasurable contribution made by people who care for people with disabilities in our community. I am also very proud to be part of a government which I believe has begun to put a priority on the issue of disability and the services, support and resources that are required for people with disabilities to maintain independence and quality of life. This government is committed to ensuring that those resources are provided.

It is important to acknowledge that, for the first time, we are seeing really significant resources and significant policy being developed to improve the quality of life of people with disability and, most importantly, to improve the quality of life of the carers who support them. Under the National Disability Agreement, the Commonwealth has committed $5 billion in funding to the states and territories to support people with disabilities and their carers. What is significant is the $244 million over five years that is being committed to provide alternative accommodation and support for younger people with disabilities, those aged under 50, rather than having aged-care facilities or retirement accommodation as their only option. As a result of that spending, the number of people aged under 50 who are living in those types of accommodation has been reduced by 191 people so far. That is the result of a commitment by this government, working with the states and territories, to reduce dependency on aged-care facilities.

Can I also say that all of us in our electorates are always talking to parents of children with disabilities, certainly to community organisations and to people with disabilities themselves. I would like to acknowledge Mr John Barry, who is a resident of Bonner, and his son Anthony, who has Down syndrome. Mr Barry is a very elderly gentleman. Indeed, he is in his late 80s. I think he may even be 90. He has cared all of his life for his son and is most committed to his welfare and to ensuring that he has every opportunity that is available to him. His son is 13 years off retirement. Mr Barry is concerned about what is going to happen to his son when he, I guess we should say, is not here any longer to support his son, when his son does not have an income as a result of the work that he does with the Endeavour Foundation. He has got together a group of parents in the area who, at my request, are putting together some ideas and suggestions that they, with a lifetime of experience of caring for children with disabilities, can come up with about support.

I am very pleased that we have a parliamentary secretary, the Hon. Bill Shorten, who has put an enormous amount of effort and a great amount of compassion together to produce some of the most exciting initiatives that we have seen in the area of disabilities for many years. I would particularly like to acknowledge the work going into the report that is currently being done by the Productivity Commission, a feasibility study to look at the concept of a disability insurance scheme. This is a clear way in which we can look at a long-term, sustainable scheme that will support people with disabilities in this community in a way that not only is long term, as I said, but gives some level of certainty and surety, therefore giving people a lot more confidence about having independence and a life that sees them achieve their full potential.

Can I also acknowledge very quickly the announcement by the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, about a policy or legislation concerning recognition of carers. The first step that the carers of this country have asked for is to be recognised and acknowledged and to work with the government to deal with this long-term issue in a sustainable and compassionate way. (Time expired)

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Riverina for bringing this important matter to the attention of the House today. I note that in her speech she mentioned that all members in this place represent people with disabilities, and they all have carers, so it is an important issue for all of us in all of our electorates. According to the Raising Children Network, four per cent of Australian children aged between nought and 14 years have a disability, including chronic illness and intellectual or physical disabilities. In 2003 this equated to just under 320,000 Australian children with a reported disability. Sixty-nine per cent of these reported disabilities refer to movement, self-care, schooling or communication, and are known as core activity restrictions. Children with core activity restrictions require plenty of attention from their parents.

Sometimes the disability is lifelong and care from the family continues into adulthood. Eventually there comes a time when the parents themselves get older and are unable to continue meeting their caring demands. A combination of longer living and a general trend towards an ageing population is making this scenario more common across Australia. When this happens it can be a very difficult and emotional time for both parents and children. Mr Deputy Speaker Georganas, I know that we recently were presented with some parents who had two diabetic children. They had type 1 diabetes, and the story they told about their caring responsibilities and how they affected their family was enlightening for me, and I am sure it was for you as well. But it is important that we in this place understand the onerous task—but, I am sure, a pleasant task for many of them; it can be quite rewarding—of providing 24/7 care for many of these children.

Part of the problem is that parents are also reluctant to plan for the future as there is no certainty, making the eventual transition sudden and unpleasant during these times. Sometimes lifelong carers can make incorrect assumptions that other family members will take over the caring role. Exacerbating this is general suspicion of government provided facilities. Many lifelong carers associate government support with large-scale institutional settings. That was the norm 50 years ago, but it is not to the same degree today. This creates a culture whereby families seek help only as a last resort. This underuse ultimately leads to an overall underprovision of facilities and places the system in a cycle of decline.

With proper planning and help from the federal government we can do more to help families prepare for the transition. Back in 2005 the Howard government announced the establishment of special disability trusts to help with this planning process. Since September 2006, families have been able to establish these trusts, which attract social security means test concessions for the beneficiary and eligible contributors. The trust is effectively a planning tool, allowing families who are able to do so to make financial provision for the future care of family members with severe disabilities. Special disability trusts have made it easier for the families of children with severe disabilities to make private financial provision for the family member’s future care and accommodation needs without being affected by social security means testing.

Special disability trusts will continue to be an important part of the way forward on this issue. However, government can and should do more to help these families. We can help the transition by bringing together disability and aged-care facilities, which at the moment are too complex, fragmented and separate. In this way families can continue to live together. This is a complex task but one I am sure we can achieve.

It is important that we as members of parliament support in our electorates the children with disabilities and the parents who care for them. Often there is a knowledge gap, with members of the public not understanding and sometimes not wanting to understand another child’s disability. It is up to all of us to make the effort to better understand these issues. I support the Activ Dragonfly Week in my electorate of Swan. It shows how care services are evolving to provide opportunities for the disabled in the workforce. A great example of this is at Activ’s Kewdale branch, where employees with disabilities work packing dry ice and cutlery for use on airlines.

Once we understand, we can not only help address the specific concerns raised by parents but provide more support to the families than society currently gives them. There are a range of emotional and financial challenges for the parents of children who have a disability. Sometimes the emotional challenges are great, leading to stress, anxiety and often depression. There are also financial burdens involved. Parents may have to leave their work to become a full-time carer and there may well be additional costs involved.

There is some excellent information available on the Raising Children Network website. I shall put their link on my website for the information of my constituents. I urge the government and the opposition to continue to fight to do more for these people. (Time expired)

Shayne Neumann (Blair, Australian Labor Party) Share this | Link to this | Hansard source

I commend the member for Riverina for bringing forward this motion. Some four million Australians suffer from some form of disability. I commend the great organisations of Focal Extended, Ozcare and others in my electorate and the churches and charities who do such great work. Ipswich was the home of the Challinor Centre, which provided institutionalised care for people suffering a disability. That was an asylum situation that went back many decades. It was deinstitutionalised by the then member for Ipswich, the former Liberal Deputy Premier of Queensland, Sir Llew Edwards. I commend him and the Hon. Dr Dave Hamill, a former member for Ipswich, who did so much to help people with a disability in my electorate of Blair. David was the Queensland Treasurer but in his tenure as the member for Ipswich he sought and obtained a huge increase in state funding for people with disability from the Queensland government, after many years of neglect.

The people who are helping those suffering from a disability, the carers in our community, are the community champions. Certainly there are challenges for those carers when their children attain puberty, in the case of girls, or grow physically too strong to be able to restrain, in the case of boys. All of us have seen family members and friends who have been in that situation. In my previous life as a lawyer I dealt with people who suffered every day because of what they had experienced in the home caring for adults, their children whom they loved, in circumstances where they could not physically care for them. That brought challenges every single day of their life. They had anxiety and worried about hitting 70 or 80 and not being able to care for them. What would happen to their children?

I think that anything we can do to help our carers, any form of legislative change will assist. I commend the government for what we describe as the secure and sustainable pension reform delivering pension increases to 720,000 disability support pensioners and 152,000 carer payment recipients of $70.81 per fortnight and $29.93 per fortnight in relation to couples combined on the maximum rate. Replacing the ad hoc payment of carer bonuses with a new ongoing $600 carer supplement benefiting around 500,000 carers with payments totalling over $480 million this year is important. Reforming what were clearly complex arrangements by providing carer payments to an additional 19,000 carers is extremely important.

The first ever National Disability Strategy and also the funding in relation to the National Mental Health and Disability Employment Strategy to get young and not quite so young people back into the workforce was very important. The self-esteem, the benefits to their families and those young people individually is crucial. The Productivity Commission’s undertaking to do a feasibility study into the national disability long-term care and support scheme is extremely important; I commend the government for that.

I also want to commend some local community organisations. I want to commend Alzheimers Association Queensland for the work they do and the relief and respite they provide. We are providing a lot of money and we have received a lot in Ipswich and the rural areas under the National Respite for Carers Program. We have got 650 community based respite services in this country, 30 demonstration day respite centres and 54 Commonwealth respite and Carelink centres across Australia. They are at the frontline of caring, providing respite and assistance to those people who are caring on our behalf for their loved ones. We have committed more than $200 million for this program this financial year, and Alzheimers Association Queensland run a great facility in Ipswich just across the road from Ipswich Girls Grammar School in Chermside Road. I have been there on numerous occasions and seen what wonderful work they do. I commend the carers.

My heart goes out to people in those circumstances with a disabled child who becomes an adult and the travails and troubles that they have—complex and difficult situations—caught between love for their son and daughter, and the need to care. (Time expired)

Greg Hunt (Flinders, Liberal Party, Shadow Minister for Climate Action, Environment and Heritage) Share this | Link to this | Hansard source

It gives me great pleasure to speak in support of the motion by the member for Riverina with regard to ageing carers. I want to add one simple thing to this debate and that is to put on the table a proposal for a national move towards greater use of supported accommodation where it suits the needs of parents, the carers and the adult children. I think it is an extremely important step forward. I bring it forward in the context that in Hastings in my electorate of Flinders on the Mornington Peninsula there is a highly developed model. It has been developed by Karl Hell of the Frankston Mornington Peninsula carers, Joy Jarman and David Jarman, all of whom are parents of a child with a disability, a child that they worry about as they age.

The starting point for this discussion is that each member of this parliament knows people, has constituents who are ageing carers who have deep anxiety about what will happen to their children whether they are 40, 50 or even closer to 60 years old who have an abiding disability. They need assistance but the parents are either facing a decline in their capacity or potentially the end of their lives. In that situation we need to relieve the anxiety for caring parents about security for the adult with a disability who is facing the prospect of losing their carers.

What I believe we need in Australia is a move towards many more options in relation to assisted living. Assisted living to me can take many different forms. I give as an example that which has occurred in Hastings, where they put together a model which does not have everything that the proponents wanted but does have a six-bed community residential unit providing 24-hour care for disabled residents. It has seven one- and two-bedroom supported independent living units for disabled adults. It does lack, despite the best efforts of the parents and carers, a respite facility. But we are working through other sources to achieve that on the Mornington Peninsula. In particular, there is a respite facility which is being proposed as part of the community use of Point Nepean, and I have supported that for seven years now. It was to be realised, but the state intervened with a very disappointing and spurious planning requirement which has effectively driven away a donor who was willing to provide $10 million towards respite on the Mornington Peninsula. That donor said, ‘I will find somewhere that wants it if the state government is going to stand in the way of it.’ That is a very disappointing and extraordinarily short-sighted outcome.

Nevertheless, the Hastings model presents a model, firstly, with community residential units providing 24 hours a day care for deeply disabled residents; secondly, with seven one- and two-bedroom supported independent living units for those with a lower grade of disability; and, thirdly, with 13 one- and two-bedroom units for those on a low income. This site is within 50 metres of my office in the electorate. I think it is a tremendous step forward. It is extraordinary that, after the change of government, we had such a struggle to get support for this project. But for the commitment of Joy and David Jarman, Karl Hell and all of the supporters, parents and carers within the Frankston and Mornington Peninsula it would simply have not come to pass.

Against that background the big history we are involved in is that we have seen a process of de-institutionalisation. The old forms of institutions, however well meaning, are clearly past their date. De-institutionalisation in many cases was simply a default just to the families. It moved from being a system of state care to a system of private care without any middle step. I think the middle step which is needed, the middle step towards which I will work—and which I thank the member for Riverina for the opportunity to discuss—is supported accommodation. I think that supported accommodation in small groups, whether it is five, or 10 or 15—(Time expired)

Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

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