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Thursday, 22 June 2006
Page: 67


Senator PATTERSON (12:39 PM) —I am not always delighted to speak on issues, but today I feel like I can say, ‘Oh, what a feeling.’ This will be a really great day when this Families, Community Services and Indigenous Affairs and Other Legislation (2006 Budget and Other Measures) Bill 2006 goes through, particularly in regard to the part of the bill that deals with special disability trusts. It will be a great day for people with adult sons and daughters with a disability. When I first went into the portfolio of Family and Community Services, a large number of parents came to me and told me that they wanted to help prepare for their children’s future after they were no longer able to care for them or after they died. That was their greatest concern. What has happened and has slowly crept up on us is that people with disabilities are living longer. I have an aunt who has a sister with Down syndrome who is 71. When I was at university doing developmental psychology, we never anticipated that people would live that long. There was no concept that children with a disability would outlive their parents, and they are.

While these people attend business services, which were once called sheltered workshops, they talk to each other about their concerns. Often parents have taken on the responsibility of a son or a daughter of another person they met through a business service whom they have known for 20 and 30 years. That is how involved they become with each other’s children. They said to me that one of the things that they found difficult was that, if they provided for their children, they were disadvantaged through the assets and means test of the disability pension. If they did not have testamentary capacity to manage their own affairs, then any money put in a trust was deemed to be an asset for the purpose of assessing the pension. So they were dissuaded from doing that. What do they do? A financial adviser would say, ‘Put this much money in’—so they do not lose the pension—‘and give the rest to somebody else to look after your children.’ You know how long that would last. Sometimes nothing thins blood faster than money. I have seen that happen in my own family with the disabled family member with Down syndrome.

I went to the Prime Minister and said, ‘I am very concerned about this.’ He said, ‘Go away and fix it.’ I want to put on the public record how much assistance the Prime Minister gave me and how much support he gave me in this because he saw that it was unfair and that it needed to be fixed. He took a particular interest in this. I want to say to him, ‘Thank you very much.’ I know that the parents of sons and daughters with a disability are very grateful too for the very personal interest he took in it.

The $200 million measure that we announced last October got 1¼ inches in the press. There was no interest from the press whatsoever. Yet, if I had to say what was one of the best things I did in the whole time I was in the executive, which was seven years, this would be one of them. It is not going to change an election. It is not going to win a mass of votes. But it is going to make an enormous difference for those parents who have cared for their children for 20, 30, 40, 50 and sometimes 60 years, like the 83-year-old with a 60-year-old son, who was cared for every day of that person’s life. They were disadvantaged through the assets and means test.

Today, we have a measure that is going to make a difference. People were crying when we made the announcement. They came rushing across to me in the airport lounge and threw their arms around me, saying what a difference this is going to make to their lives. That is how important this part of the bill is to that small group of people. A $200 million package means that they can have a $500,000 trust that does not affect the assets test and does not affect the income test, if the income is used for their care. The income for that care can be used, for example, on a TAFE course, in activities of daily living, on learning how to use transport and some of the things that will help them to be more independent in their later life, and it can be used for care for them in accommodation or care for them in terms of personal assistance. Not only that but, when families gifted money, they were disadvantaged because they would lose the pension.

I want to give you an example of someone who came to me. This woman bought a house in the fifties for £15,000, I think, in the inner city of Melbourne and now it is worth about $600,000. She is in her 80s and her son has an intellectual disability. She wanted to downsize by moving to a retirement village. She wanted to put $250,000 into a retirement village and actually keep $50,000 as a buffer to pay for extras and still have her age pension. She had no income other than her age pension and his disability pension.

She wanted to put $300,000 into a group home and then be able to leave her share of the retirement village to him, her only child. What happens? He loses his disability pension because he exceeds the asset test; she loses her pension because she has gifted more than $10,000. So what does she do? She stays in the house until she cannot manage any longer or she dies, and he then goes onto the top of the emergency list for disability accommodation under the state program, taking the place of somebody who is maybe doubly incontinent and cannot feed themselves, and leaves a parent in their 70s managing that sort of situation. She wanted to make sure he was looked after, and with this measure she can do it. She still gets her age pension in the retirement village and he will still be able to draw the disability pension. That, for her, she said, was life saving. So it is a very important measure.

Once the announcement was made, I appointed an advisory group to provide advice on the policy detail of the measure. I want to extend my appreciation and the government’s appreciation to the chairman of that group, Mr Ian Spicer, who has an enormously long record in chairing the Australian Disability Advisory Council and has been very involved in a business service called VATMI Industries; Mr Tony Blunn, also a former secretary of the Department of Social Security, who brought to bear his knowledge and understanding of social security; Mrs Sue Boyce;  Mr Ian Gresswell; Mr Alan Swan; and Mrs Judy Brewer Fisher. Some of those people have financial expertise, others business expertise and some of them have children with a disability. I want to thank them for bringing to bear their professional and, as I said, in a number of cases their personal experience to this task. I particularly thank Mr Spicer, who chaired that committee, and Mrs Brewer Fisher, who really brought this issue to a head when she was chairing Family Carers Voice. She spoke to the Prime Minister about some of the issues and helped me to bring to his attention the concern that we had about the assets and means test.

I visited parents in Sydney, in WA, in Brisbane, in Tasmania—in fact, all over Australia—and talked about this issue. They raised with me the fact that they wanted to use the resources they had to provide for their children, but they were being disadvantaged. This bill means people can actually make some plans. It will enable families to provide for their children and have peace of mind, and it will make the system fairer and less discriminatory. It was very discriminatory in that if you were physically disabled but could move into and own your own home, or be left a home, then you did not get affected by the assets test, but if you could not manage your own affairs and your assets were held in a trust then you lost your disability pension.

A word to my Senate colleagues from every state: our job now is to go around to the state ministers and say, ‘You could use this very cleverly.’ The states could integrate this measure into a policy that they can put in place under the Commonwealth-state disability agreement, assisting both families who can provide accommodation for their children and those who do not have the means to do so, and marrying those two. I have to say there is one minister who cottoned on to this measure very early—in fact, before I announced it; I thought he had been reading my papers!—a minister for whom I have great respect, and I hope that I will be able to work with him and show that we can actually integrate these two policies to get greater leverage out of this measure. If the states are smart—some of them are not so smart—they will be able to do this.

The other thing that ought to be addressed, particularly in New South Wales and Queensland—and senators from New South Wales and Queensland ought to be onto this—is the ideological hurdle or block in the departments which means that any facility with over three or four people is considered an institution. Older people can choose to live in a retirement village with 350 people. Older people can choose to live in a smaller retirement setting of 100 people. Older people might choose to live in an Abbeyfield house with 10 people. They might choose to live with three other people or they might choose to live alone. Why can’t people with a disability have the same choice?

In Bega Valley and down in Warragul we have two facilities which each have more than four beds, perfect facilities for respite, but they cannot be used because the state says they are institutions. We have to get over this. We have holidays in motels with 300 bedrooms; nobody tells us they are ‘institutions’. Yet in Warragul people cannot have respite in a place with 12 beds because it is seen as an institution, a refurbished motel. So the states have a long way to go in becoming more flexible. They should not have thrown the baby out with the bathwater when we went from institutions to community care, thinking anything with over four beds was an institution.

We have a group of parents in Melbourne who want to use this measure to build a facility for their young people, and they were told that if it had more than four or five beds the state would not deliver any services to it. Get a grip! With the parents being able to contribute $200,000 each—and they were actually gifted the land—for $1 million they could build a very nice facility with possibly a bed-sitter or a one-bedroom apartment for a caretaker, using some of the money from the trusts to pay the caretaker to manage these people. It would not work with three beds, but it might work with 10 in an Abbeyfield type structure. So I would implore my colleagues, particularly those from Victoria and New South Wales, to shake the state governments out of this ideological block that means that people cannot have that sort of choice. If they do that, this measure will have much more leverage. So this is a very important measure for people.

I want to draw people’s attention to page 36 of the explanatory memorandum where it looks at division 3 of this bill which is ‘attribution of assets of special disability trusts’—and a number of parents are going to be looking very carefully at the Hansard of this because they are very keen on this measure:

Subsection 1209Y(4) provides that the value of any right or interest of the trust in the beneficiary’s principal home is disregarded for the purposes of working out the value of assets owned by the trust. This is consistent with normal social security rules, under which a person’s principal home is exempt from the assets test.

That is an amazing measure. That was not something I expected to get. It is tremendous news. There are people in Western Australia, Victoria, South Australia and Queensland that I know who are already planning to use this measure. It is going to assist in removing that ideological block and in accommodating young people with a disability, getting them away from ending up in a nursing home when they are too young. If the states use a bit of creativity and a bit of flexibility and do not have that ideological block, there are huge advantages for them in using this measure.

I do not often blow my own trumpet, but I want to today because I am so excited. When it went through cabinet, I went home walking on cloud nine.


Senator Ferris —So you should be!


Senator PATTERSON —Thank you very much, Senator Ferris. I want to give credit to the staff of the department. It has not been easy. We do not want to drive a truck through this. We all know that, when you have a measure, there will be people who try to scam it. I will be watching very closely and I will be appalled if anybody tries to scam this measure. This measure is meant for people who have limited or no testamentary capacity and who cannot manage their own affairs. It is also to help parents plan and give them peace of mind. It is meant for the 83-year-old that I met in Warragul who was caring for his 56-year-old daughter with Down syndrome having grand mal seizures, the mum in the inner western suburbs and the father and mother in Western Australia who want to make sure their 33-year-old son, who has been in a special school and is now in a business service, is provided for. I can go through family after family who have been hanging for this measure for a long time. I ask people to make sure that we watch very carefully so that people cannot drive a truck through this measure. That is what I asked the advisory committee to do. I have a couple of comments I want to make in the committee stage about the criteria for being in or out of the trust. I commend the bill to the Senate.