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Wednesday, 1 September 2021
Page: 78


Dr FREELANDER (Macarthur) (16:50): I thank the member for Boothby and the member for Indi for allowing me to talk ahead of them today on the National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021. This is a speech I really want to give, because I want to give the perspective of people with disabilities and incontinence. I've cared for many children as they grew into adult life with severe disability, and I remember the difficulties that their parents faced with them as they approached adult life with faecal and urinary incontinence. Of course, we're all born incontinent. For most of us, as our children grow, we toilet-train them and, at around two to three, most kids are toilet-trained. It's a very exciting time for a parent when your little boy or girl—it's usually girls earlier than boys—is finally toilet-trained and you can go out without the need to take nappies with you. You go out knowing that you will be doing an exploration of all the local toilets as your two- or three-year-old wants to use them all! That's a really exciting time.

For many of the kids that I looked after, that didn't happen. I can remember the excitement that some parents had when they would bring their 16- or 17- or 18-year-old child in to see me, and their child was finally toilet-trained after all those years. But of course many children with severe disability progress into adult life still requiring continence aids. That is a really difficult problem. My secretary, Cheryl Roberts, has worked for me now for over 35 years. Her daughter Stacey had severe disability. Even in her 20s she was not continent. I asked Cheryl just today, before I gave this speech, what the problems were that she faced. The first thing that people face with this issue is the cost. I looked today, and the cheapest price for small adult sized nappies was $29.95 for a pack of 28. That's only relatively small ones. For medium sized ones it was $49.95 for a packet of 28. And for the large sized ones, which many of these now-adults need, it was $61 for a packet of 30—$2 a nappy. It's a huge cost.

In days gone by, before these were subsidised, the parents had to meet those costs themselves. Many of the kids that I saw didn't come from wealthy families. On several occasions I actually paid for nappies for an adult child. It was the introduction of the PADP scheme, the Program of Appliances for Disabled People, run by state governments, that allowed some subsidies to be provided for incontinent older children, over the age of five, and incontinent adults. That was a huge positive in their lives. Subsequently federal government funding became available, and now, with the NDIS, there's been a dramatic improvement in the lives of these families and these kids. Cheryl explained to me that the difficulties were not only in paying for the cost of the nappies. Cheryl's daughter Stacey, towards the end of her life, weighed over 80 kilos. Cheryl herself is only 60 kilos, and she had to not only find a place where she could actually change her adult child's nappy but be able to lift her and manipulate her. That was a real difficulty because even baby change rooms don't cater for incontinent adults. Cheryl said she often resorted to changing her daughter on the floor without any help to manipulate her.

This is a very important bill because it allows more access to continence aids for people who are incontinent, and appeal rights for them. There is not only the cost of it; there are physical, psychological and social costs. Having a child with severe disability who is incontinent as they approach adult life is a real difficulty. Not many places are designed to deal with this. As Cheryl and many families have pointed out to me, they are very restricted as to places to change their adult child. The Continence Foundation of Australia mentioned this in the snapshot they did a couple of years ago about what incontinence means for disabled people.

I think this bill is very important in allowing people more rights to appeal decisions about funding for continence aids and supports. I would also add that we need to make venues more understanding of how to manage continence difficulties in adults—in particular, adults with disability. This bill is a very good beginning of that. As the shadow deputy minister mentioned, we need also to be aware of the importance of proper continence management in special aged-care facilities and disability-care situations. We know that, if continence issues are not dealt with for adults who have mobility difficulties, lying in wet nappies for long periods of time not only increases the risk of urinary tract infection—and that can be an end-of-life event in very old fragile people—but can lead to the development of pressure sores, extreme discomfort, pain and a lot of suffering. Continence is a really important issue as adults approach the end of life.

We support this bill, and I think there's much more that could be done to support those with continence difficulties. In particular, I really want to make the point that continence is a specialised issue both for people with disabilities and older Australians. I fully support the development of continence clinics which are able to deal with this very special condition in a specialised way and in a way that shows understanding of the difficulties that it causes. We know that continence in adults can relate to a whole range of neurological difficulties, mobility difficulties and dementia. For men, it can follow prostate surgery. For women, it can follow childbirth and gynaecological surgery. These are issues that all of us may face as we go through life. It is a highly specialised area and one that can be managed much, much better if the people that are dealing with it understand the issue and are able to access the services and supports that are needed for people with chronic continence issues. The Continence Foundation of Australia has studied this deeply. At any stage, around 15 per cent of the Australian population have some issues with continence—and many of them are quite severe, particularly with an ageing population. It is very important that these issues are addressed for quality-of-life management and also to help families who may be dealing with an adult with continence difficulties.

I don't want to talk for too long. I support this bill strongly, but there is much more that could be done. An investment in the management of continence in Australia would be very worthwhile for people with disabilities and for our ageing population. I support the bill, particularly for my clients who have disability and continence difficulties in adult life. I commend the bill to the House.