Senator WEST (10:15 AM) —The Social Security and Veterans' Affairs Legislation Amendment (Budget and Other Measures) Bill 1997 is a bit like the curate's egg: there are some parts that are good; there are some parts that are bad. I have concerns about part of schedule 3 in relation to income stream terms of over five years and under five years. I just wonder, with this government encouraging older people to stay at work until they are 70 years of age, what the actuaries might be advising some people to do with their investments when they actually retire at age 70. What are they saying about the five-year period?

Our life span, according to the Bible, is three score and 10, which is 70. Seventy-five is beginning to nudge up into an area where people are dying at a faster rate. I wonder what the actuaries may well have to say about that particular requirement. I recognise the need to ensure that people invest wisely and that their investment is not going to be able to take advantage of what may be loopholes but I also would not like to see people disadvantaged if, at age 70 when they retire, they may well have an illness that is not going to see them live more than five years and they might be better off making a certain type of investment which gets trapped under this. I urge the government to look very carefully at that particular issue.

The piece that I want to concentrate on is the payments to carers of those under and over the age of 16. I think extending the carers payment is a great idea, I think that increasing the amount is a great idea and I think that increasing the number of days that a person can be away from the person they are caring for is also to be commended. But I have major problems with some of the definitions here. Over 16 years of age a person has to be severely handicapped for the carer to qualify. A person's disability must be such that they require frequent care in connection with their bodily functions or require constant supervision to prevent injury to themselves or to another person.

Under the age of 16, in this bill, they must be profoundly disabled for the carer to qualify. I am having difficulty seeing the logic in the differentiation of the definition between the two ages. I know that someone is likely to tell me, `We have improved the child disability allowance and those people who cannot get the carers support pension will be able to qualify for the child disability allowance,' but with the restrictions on and the tightening up of the child disability allowance there are going to be people who will miss out altogether.

I am getting quite a number of calls to my office from parents who have children with quite severe disabilities or illnesses and who are now finding, because the child has hit the magic age of six, seven or whatever, that they are coming off that allowance. These are children who require a lot of supervision, assistance, actual administration of medication and things like that. But this government has knocked them off. So the difference between severe and profound disability is a major concern. Those in the industry—not the department—of the provision of care to people and diagnosis of people with severe and profound illnesses will tell you that there is quite a significant difference.

I have also major concerns that under the bill the disability that will give rise to a child's parents being eligible for the allowance for a profoundly disabled child must have three of the following seven specific circumstances: the child must be tube fed, the child has a tracheotomy, the child requires a ventilator for at least eight hours a day, the child has urinary and faecal incontinence, the child cannot stand without support, the child's condition is terminal and palliative care has replaced active treatment, the child requires personal care on at least two occasions between 10 p.m. and 6 a.m.

There are many children who are terminally ill who require palliative care who do not fit into any one of those other categories at the stage when they are transferred from active care to palliative care. They may well have faecal and urinary incontinence when they are very close to their death and they may also not be able to stand without support very close to the time of their death but there are many children around with terminal illnesses on palliative care who do not fit into another two of those criteria.

But the smaller those children are, the more love, care, attention, support and affection they require from their parents or carer. They might not require to be fed, they might well be able to toilet themselves, they might well be able to walk around as their condition enables them; what their needs are are more the spiritual and tender loving care needs than the active hands-on medical model. This is very much the medical model. This does not take cognisance of the psychological needs of a child or the family, or the spiritual needs of that child. I have a grave concern about it, as I have said.

What about a child, for example, who has severe epilepsy not well controlled by medication and who requires supervision? They may, during an epileptic seizure, actually have faecal or urinary incontinence, but they do not require tube feeding, they do not require a tracheotomy, they do not require ventilation, they cannot stand—having an epileptic fit you are not supposed to be standing anyway. But they do not have a terminal illness and they do not require personal care each day at 10 p.m. and 6 a.m. What about that child? That carer is not going to be eligible, from my reading of the bill, and that is a major concern to me.

What about children with severe psychiatric conditions who require constant supervision to stop them from harming themselves or from harming others? It would appear to me, as I said, that this is very much the medical model. It is not the holistic model of health that should be being taken into consideration here; it is very much the physical, medical model. Those within the mental health stream might well feel that this is a further indication of discrimination against those with a mental health problem.

To people who tell me that these diseases do not occur in children, then I say to them, `That is rubbish! I have cared for children. I have had children in my clinic that I have had to care for who had these disorders or I had to support the parents.' I know that they are rare, but I have had a small child in my clinic who had a disorder so that she was self- destructive. The inside of her mouth was constantly ulcerated where she kept biting it. She kept biting her limbs that she could get to her mouth. I forget the name of the disease, but it was a diagnosed disease and she was self-destructive.

She could feed herself; she did not require a tracheotomy; she did not require ventilation; she was not incontinent of faeces or urine; she could stand without support—after she was a baby and had learned to walk. She did not have a terminal illness and require palliative care. She did not require personal attention between 10 p.m. and 6 a.m., but she required constant supervision to see that she did not injure herself. It is quite probable that by the time she hit the age of 16 or 17—if she lived that long; if she had not damaged herself permanently and irreparably and killed herself—she would have automatically gone onto a disability support pension. What about these children?

Senator Newman —What did you do about them?

Senator WEST —We supported these parents. The psychiatrists were trying every form of medication.

Senator Newman —What did your government do for them, Senator?

Senator WEST —This was when you were in government last time, Minister.

Senator Newman —Was it more than 13 years ago?

Senator WEST —Yes, it was, Minister. It was when you were in government last time.

Senator Newman —Why didn't you move to do something, then?

The ACTING DEPUTY PRESIDENT (Senator Ferguson) —Order!

Senator WEST —I wonder about children who have profound intellectual disabilities—those who require assistance with their daily activities. As they get older and bigger and stronger they require a lot of care. Parents are giving up work to care for these people. What makes somebody under 16 different from someone who is over 16 is the question that I ask.

Senator Newman —Why didn't you ask your own government?

Senator WEST —Minister, you are the one who has introduced the legislation. I am trying to be constructive in assisting you to look at how you can actually improve this legislation and make it better. As I said earlier, the government has done some good things here and I pay you a tribute for that, but let me point out—

Senator Newman —Well, recognise where it was targeted.

Senator WEST —Maybe you and I disagree on where it is targeted. I want to stand up for those that this government has not targeted, because they are the ones who require assistance for their children. We did target children with disabilities. We were not the ones who tightened up considerably the child disability allowance. We are not the ones who are claiming millions of dollars in savings in that particular area.

But I have a grave concern for this because this is an area that I have worked in. This is an area for which I have had responsibility in a professional capacity. Whilst these are not a great number of people, for the families that are involved it is a huge problem. They have major problems to overcome. They require a lot of support and that is something that this is not going to give them. They often have to give up employment so that they can care for their child. I have major concerns about this type of thing.

It is wonderful that the government has put in this offer, but I do not think it has thought through the groups that are going to be most adversely affected and the groups that might well be left out of the coverage of this legislation. Maybe it is because people have not thought it through properly. For children with terminal illness, during the last few weeks or months of a child's life the family want to be able to be with that child. People would prefer to have their children at home rather than in hospital. But I wonder, because of this, how many are not going to be able to be cared for at home that could have been cared for at home? That is something of major concern and worry to me.

I am sorry if the minister does not like what I am saying. I am sorry if she thinks I have missed the point completely, but this is a group of people that, if you are going to start to provide a service to one, you have to provide it to all. Given that they have already made access to the child disability allowance more difficult, there is going to be a group that used to get some support who now will be getting no support. The opposition will certainly be looking to move an amendment to tighten up those differing definitions because they are of major concern to us.

That covers my major concerns with this bill. Some of it does simplify and improve the provisions dealing with hardship rules applying to income maintenance periods and makes them apply to proposed seasonal work and preclusion periods. As I said, please do not think that this bill is something we totally disagree with. There are good parts in it, but the parts that can be improved need to be improved.