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Wednesday, 4 May 1994
Page: 184

Senator REID (1.02 p.m.) —I take this opportunity today to raise a matter which I have raised previously, the first occasion being on 31 May 1990, when I spoke about the Multiple Sclerosis Society of the Australian Capital Territory, its facilities here and the government's failure to recognise the benefit of those facilities. I am speaking this week because it is Multiple Sclerosis Awareness Week. The society is running a number of functions to let people who have multiple sclerosis, who have recently contracted it and who are perhaps not aware of the society, know what services are offered and what goes on. There is to be an open day so that people can visit and find out what can happen at the society.

  There is another reason why I am pleased to raise this matter at this time. There is now a new minister for health, Dr Lawrence, and I want to make a plea to her to have a look at the situation that exists. I hope she will have enough sense and compassion to understand that the academic rules that operate under the Disability Services Act have precluded the respite care centre from being able to operate in the manner for which it was constructed. I hope she will go there and, understanding the need for the facility to operate as it should, make funding available in the same way as it is made available in other circumstances.

  The society in the ACT was incorporated in November 1978 to offer facilities for people with multiple sclerosis, not just in the ACT but in the area. The society has been significantly funded by Miss Gloria McKerrow. She has been most generous in relation to the construction of both stages of the proposal. The facility is not far from here—about seven minutes away at the most—in the suburb of Deakin. It comprises a day care centre, which was built first, and some fairly small administrative offices. The day care centre is a place that people suffering from multiple sclerosis can visit to meet other people, to discuss their common problems and complaints, to take part in activities and generally to enjoy being away from their homes and in an environment where they can mix with other people for a time.

  The premises were built in three stages, not just at the whim of somebody deciding to build it but only after careful and detailed consultation with people suffering from multiple sclerosis to ascertain what members of the society and their families believed would be of benefit and assistance to them—some offices, the day care centre and, perhaps most needed, some respite beds. The respite beds were a second stage of construction. This consisted of a four-bedroom unit within what looks like a small cottage adjacent to, but not attached to, the day care centre.

  For some reason, this has run foul of the Disability Services Act—of course, the act is not only what is put into place; it is the way it is interpreted. It is an absurd academic criterion that says that, because this place is not in a residential area, it cannot be funded. The respite care house is no more than half a kilometre from housing in the suburb of Deakin. If it were amongst those other houses, apparently, it could get funding for respite care. But, because it is next to the day care centre, it is precluded. I defy anybody to explain to me the logic of interpreting the rules in this way. People who want to go there, or need to go there for respite care, would be glad, on the days that they are there, to have the opportunity to go to the day care centre—some yards away—where they could meet and enjoy the company of other people during that brief period.

  However, from 1989—when the centre was opened—for those absurd reasons it has not been able to operate with government funding as a respite care centre. It has operated to a limited extent with the limited funds the society has had available to it. This is not the way it was intended to operate but still the absurdity goes on. Those going there this week to inspect the facilities as part of awareness week will see what is happening.

  There are more than 100 members in the society who may need, and like, to have access to the respite care centre from time to time. I think everybody agrees that people like to live in their own homes and that the facilities should enable them to do so. Respite care is available in people's home. A carer can move in to look after somebody for a period of time but it is not always possible and it is not always in the best interests. There are times—for example, when a house needs to be painted or have a new roof put on it—when respite care, away from the principal place of residence, is absolutely reasonable.

  However, why does the respite care house have to be in a suburb? Why cannot it be half a kilometre away from that suburb next to the day care centre, so that during the day the person in the respite house could move to the enjoyable surroundings of the day care centre, and be able to take part in craft activities or book readings or whatever else might be going on there at the time? My plea to Dr Lawrence is that she have a look at this piece of absurdity and do something about it. This respite house is sitting there not being adequately used.

  I am not suggesting that people with multiple sclerosis in the ACT are not able to get access to respite care. They are eligible for respite care in their own home—whereby a carer goes to them—in the same way that other people are under the scheme. With the number of people suffering from multiple sclerosis in our community, a four-bedroom respite care house would probably not be adequate, if that were the only place where they could get respite care.

  The need to have a carer go into the home is a part of providing respite care, and this other facility is another part of the care. The facility has a most beautiful view across Woden Valley and the Brindabella Ranges. Anyone who goes there will see that it is purpose-built. It is a really nice small house with suitable bedrooms and suitable space for carers. People can go there for two or three days, or perhaps a week, if need be, and enjoy being in those surroundings—and make use of the other facilities available.

  As I said, I have talked about this before and it is still beyond my comprehension that this should be the case. There are a number of young people with multiple sclerosis in our society and the only place they can live if they are not able to be accommodated at home is in a nursing home. That is another aspect of this matter. One might decide that young people should be able to live in this facility for at least part of the time and be amongst others of a similar age, as against those with whom they are forced to mix at the present time. It is another aspect of this story.

  But the principal story stands on its own. That society has raised funds to build these facilities. It has had some government assistance with the day care centre. It has raised the capital sums involved but the money provided and made available by the federal government for respite care cannot be used at this facility because of the absurd academic rules. They seem to have been laid down with absolutely no consideration for the needs of the people concerned or the desires that they had when they expressed the view that a facility right there would be of great benefit to them.

  We have had a number of ministers for health; some have even expressed concern about it and shown interest. I know Dr Blewett visited the facility; I was there at the time. I thought he understood the problem; I thought he recognised the benefits that flowed from the place as it was, but nothing happened. Somewhere out there, there seem to be people pulling strings who say, `If you don't fit in with our rules, you don't get any consideration, no matter how sensible what you're doing might be.'

  So today, in Multiple Sclerosis Awareness Week, I make a personal plea to Dr Lawrence to whom I have written. `Please go and have a look at the facility. Please look at it from the point of view of people with multiple sclerosis who could get real benefit from being able to use this place. Please make funding available for them to use it as a respite centre. Do not allow yourself to be tied up in rules and red tape and do not allow yourself to deny the small amount of funding which would make life simpler and more comfortable for some of those people with multiple sclerosis in our community.'