Ged Kearney (Cooper, Australian Labor Party, Shadow Assistant Minister for Health and Ageing) Share this | Link to this | Hansard source

[by video link] I rise to speak on the National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021. Labor supports this bill. It makes important changes to the Continent Aids Payment Scheme, otherwise known as CAPS.

CAPS is an annual or six-monthly payment available to people who suffer from permanent and severe incontinence. The changes made by this bill will allow people to apply for an internal review or go to the AAT for a decision made by the department secretary with respect to their representatives or payments made under the scheme, because continence aids are not cheap. They are expensive, yet they are a vitally important product to those who need it. For many, the CAPS goes a great way to making people's lives vastly better, so we support this bill.

For the vast majority of Australians, incontinence is not a subject they discuss on a regular basis. It often doesn't make headlines or feature at the barbecue banter or the water cooler chats, and rarely does it make its way to the chamber. But, if you look at the statistics, chances are at least one person around the barbecue or the water cooler might just be experiencing incontinence of some sort—as might several people right here in this chamber now. You see, incontinence affects one in four adult Australians.

Men do suffer with it, but mostly it affects women. Urinary incontinence affects up to 10 per cent of Australian men and 38 per cent of Australian women. Eighty per cent of those with urinary incontinence in the community are women. And it's not only the aged that have this issue: over half of women living in the community with urinary incontinence are aged under 50 years. Women who have had two or more vaginal deliveries are at higher risk of developing urinary incontinence. In fact, injury during childbirth is the most common cause of the damage leading to stress incontinence.

Although women are more predisposed to this condition, men are also commonly affected. Generally, males who have had their prostate removed or resectioned are more likely to suffer from incontinence, and another population that has that higher incidence is male and female athletes. This includes both endurance athletes and powerlifters. However, this condition can be tricky, because it can result from many different stresses and causes, and of course it's important to note that incontinence can be both urinary and/or faecal. Damage to the nerves, muscle and connective tissue of the pelvic floor can be a cause of stress incontinence, which happens when physical movement or activity, such as simply coughing, sneezing, running or lifting heavy objects, happens. These things put stress on your bladder.

Other causes can include weakness or tightness in the pelvic floor muscles, lower back problems, pain, excessive weight, nerve injuries and more serious pathology. Additionally, surgery in the abdominal area can lead to incontinence. Other risk factors commonly linked with it include pregnancy, younger women who have had children, menopause, urinary tract infections, constipation, reduced mobility, neurological and musculoskeletal conditions, and health conditions such as diabetes, stroke, heart conditions, respiratory conditions and prostate problems, and some medications. Of course, many Australians with neurological, genetic and other disabilities require aids. Sadly, a risk factor for faecal incontinence is urinary incontinence, so one follows the other.

I mention all of this, uncomfortable as it may be to hear, because, as you can see, incontinence is not some vague mystery illness or rare disease. It is as common as all get-out and it's all around and amongst us, so it's important to talk about it in places like this, outing it as an everyday experience that deserves attention. It's important to show that we are informed, that we understand and that we care. It is an issue that is too often hidden, and people are often reluctant to come forward and get treatment. We know that 65 per cent of women and 30 per cent of men sitting in a GP waiting room report some type of incontinence, yet only 31 of these people will seek help. We also know that 70 per cent of people with urinary leakage do not seek advice or treatment, and this is especially true for men. For example, urge incontinence, a strong and sudden need to urinate, occurs commonly with prostate disease. It has a low incidence in young men and increases as men age. As it's a sign of potential cancer, it's extremely worrying that people don't feel they can report it or seek treatment.

Research tells us that many people with incontinence don't seek help. Depending on the individual's personal beliefs and feelings about the condition, they might not be bothered by it or try to hide it or deny it or not want to talk about it. It can cause anxiety, frustration, anger and even grief. There are feelings of embarrassment and shame, and often an overwhelming sense of loss and grief because of the inability to control this bodily function. Understandably, it comes with low self-esteem or confidence. People feel lonely and isolated. There can be a loss of desire for intimacy and an impact on sexual activity. The impact on mental health is immeasurable. As I said, this is far from a condition limited to the elderly, as people imagine. So many young people are affected. For example, 44 per cent of women living in the community with faecal incontinence are under 50 years of age—astonishing.

But, with respect to older Australians, the outcomes are stark. It's a major risk factor for admission into residential aged care. In fact, faecal incontinence is one of the three major reasons, along with deceased mobility and dementia, for admittance to residential aged care. Another study found that 81 per cent of women and 75 per cent of men in permanent residential aged care had some degree of incontinence that was not self-managed. We were shocked by some evidence given to the royal commission into aged care on the prevalence and lack of management of incontinence in aged-care facilities. So often the smell of urine permeates from the nursing homes where the problem is not well managed. The commission heard that some management practices actually lead to residents becoming incontinent. I know that such practices can be related to understaffing, where carers and nurses simply don't have the time to toilet residents frequently. As a nurse, I remember good nursing practice is toileting a resident every two hours, and what we know now about current staffing issues in aged care is that that would be impossible, so incontinence pads are used instead. Some poor residents sit in wet pads and beds for long periods of time. Consequently, they lose bladder tone and they become prone to urinary tract infections, which again contribute to incontinence. It is a vicious circle.

Carers and nurses in residential aged care have reported to me that incontinence pads can be rationed. They are locked away. They're not changed as often as they should be, and this is shameful and avoidable. Any review of funding for aged care should of course ensure enough staffing to properly attend to hygiene needs, including toileting. But also residential aged-care facilities should be held to account for poor continence practices. I believe the Continence Foundation of Australia has commissioned the National Ageing Research Institute to develop and test a best practice model for continence care in residential aged care. That's great; I welcome that. But will there be enough staff to implement their recommendations? The royal commission recommended an increase in care minutes and a registered nurse on shift in every nursing home. Yet the Morrison government has only accepted part of that recommendation; it's only gone halfway. Those extra minutes of care, those extra staff, could mean residents sitting in soiled incontinence pads and soiled beds for less time. It might even mean more staff to properly toilet their residents so that incontinence pads are not soiled or needed at all.

Worryingly, recent data has shown we are facing a critical aged-care workforce shortfall of more than 110,000 workers in the next decade. CEDA chief economist Jarrod Ball said:

We will need at least 17,000 more direct aged-care workers each year in the next decade just to meet basic standards of care.

The National Centre for Vocational Education Research has revealed that since the government came to office there are over 4,000 fewer health and welfare support workers and over 3,000 fewer aged- and disability carers. This is a cut of more than 7,000 workers to those coming through the skilled workforce.

The workers in aged care and disability are exhausted, overstretched and under-resourced to the limit, and they lack the resources they need to take care of older Australians and people with disability. I wonder if the minister for aged care understands this. I wonder if he gets the real-life implications of an acute shortage of workers and of aged-care workers not having enough time to properly care for their charges. Imagine how you would feel as a carer, knowing an elderly man has soiled his incontinence pad and you can't get to him to change it because you're tending to dozens of other residents at the same time. I ask the minister to imagine if that elderly man was himself. He isn't exactly a young man—not that there's anything wrong with that; I'm not being ageist here at all! But he isn't all that young and his elderly years are indeed ahead of him, as they are for all of us, me included. I wonder how he would feel knowing he may find himself in a nursing home in need of incontinence pads. I hope that is a sobering thought. Maybe incontinence and this subject isn't something he turns to but something he turns his nose up at. Better management of incontinence and indeed maintenance of continence where possible means prioritising.

It takes specialist care and knowledge to care for an incontinent person. As a nurse, I saw close-up the role of specialist continence nurses and the important work they do in helping people deal with a life-changing development. Their role is so intimate, so personal and vitally important. They deal with so many questions, about coping at home, managing while at work, dealing with embarrassment and dealing with intimate relationships, that impact on personal lives. Continence care nurses are specially trained nurses with advanced practice skills in continence care. They are experts in its management. They are skilled to help people from different cultural backgrounds at different stages of their life across a multitude of communities in a range of settings. A nurse continence specialist provides services as an integral part of the healthcare team along with other allied health professionals such as physiotherapists and pharmacists. Their roles need to be fully recognised and resourced to help people with incontinence have the best lives they can.

Our experts spend a lot of time working with and helping carers of people with incontinence. Carers, I must add, can feel overwhelmed with the stress arising from life and relationship changes. There's the huge financial burden of continence care. There's increased time and costs spent on cleaning clothes and bedding. They may find their behaviours in their loved ones difficult to understand and accept, making it harder for them to help the person achieve the best outcomes for each of them. For carers, it's especially important to recognise their own changing emotions and feelings—especially carers for people with disability, who may be a child, a sibling, a partner or another relative. It can be exhausting and straining.

That brings me to mental health care needs for someone with incontinence and their carers. As I've mentioned, the impacts of incontinence on people's lives can lead to depression, poor self-image and even suicide. People with incontinence must be able to access affordable mental health care. So, while we support this bill, and it is an important bill for all of the reasons I've mentioned, it's imperative that the government understand the broader impacts of incontinence on the community and their failings, especially when it comes to aged care, disability care and mental health care. I'd just like to finish by adding that, if anyone by chance is listening to this speech and thinks they need assistance, you can find out where your local nurse continence specialist is by calling the National Continence Helpline—it's a free call—on 1800330066.

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

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.

Nicolle Flint (Boothby, Liberal Party) Share this | Link to this | Hansard source

I would just acknowledge the contributions and expertise of the members for Cooper and Macarthur on this very important issue. They have both had very successful careers within medical services in Australia. I know that they have just provided a lot of information that will be of great use to people watching today or listening at home.

The National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021 will reform the review of decisions made under the Continence Aids Payment Scheme Instrument, conferring review functions of decisions to the Administrative Appeals Tribunal. This will allow for Australians who are using the CAPS program, or their nominated representative, to apply for an independent merits review by the AAT for decisions made under the program. This is a commonsense reform to the scheme's operation and brings it into line with many other programs and benefits offered by the federal government to Australians in need.

I think it's important to reiterate what the members for Cooper and Macarthur have said and explain a little bit about why this program is needed, who this program assists and how the program helps people before again reiterating why the changes to this legislation are needed. The CAPS program assists people suffering from incontinence. This, like many other health issues that involve bodily functions, is not something that many people are comfortable talking about or letting others know that they suffer from. So I hope that by discussing this bill today, and the broader issues, we might help someone watching or listening to get the help they need or to discuss their problems with somebody—to assist in understanding and to gain support. Again, I thank the members for Cooper and Macarthur for lending their medical expertise. The member for Cooper was a nurse and the member for Macarthur was a specialist paediatrician, and they have both had personal experience in supporting people and families with incontinence issues.

Incontinence is described as follows by the Continence Foundation of Australia:

Continence is the ability to control your bladder and bowel. Incontinence is the involuntary loss of bladder and bowel control.

This affects approximately 15 per cent of the Australian population. If you would like more information about continence and incontinence, please visit the Continence Foundation of Australia website, which is continence.org.au. You can find a lot of very clear and easy-to-understand information, and you can find out more about where to get help and support. The Department of Health also provides the National Continence Helpline, which is staffed by a team of continence nurse advisers and is available to anyone in Australia. It operates from 8 am to 8 pm, eastern standard time, Monday to Friday. You can contact the hotline on 1800330066, and that's a free call.

It's really important to understand that incontinence can affect anybody: men, women, young adults, teenagers and children. For sufferers, it can be deeply embarrassing and affect and impact every part of their daily life. But, as the Continence Foundation of Australia explains, there's a lot of help available to people, so, again, please visit their website at continence.org.au or call the Department of Health's national hotline from 8 am to 8 pm, eastern standard time, Monday to Friday, on 1800330066.

There are many specific health issues that can cause incontinence. In men it may be because of prostate issues, or perhaps after prostate cancer surgery or perhaps because of pelvic floor issues. In women it may be because of menopause, pelvic floor issues or as a direct result of childbirth or prolapse. It can also affect children and teenagers for a variety of reasons. A range of other serious diseases and medical conditions can also cause incontinence, from stroke and diabetes to dementia and Parkinson's disease, and arthritis and mental health conditions may be linked with incontinence, even if they don't directly cause it.

People with incontinence often need careful planning in their days; they need to make detailed plans for travel and ensure that they have the continence products they need, which is what this bill is all about. Those who care for people with incontinence also take on an involved and taxing task. It can complicate even the simplest of tasks that most of us take for granted. It can often be one of the most difficult aspects of caring, as the member for Macarthur has just powerfully described. It can be unpredictable and add a lot to a carer's workload. For this reason, there's a huge psychological toll and impact on carers but also, of course, on the person who is suffering from incontinence. If the condition is not managed well, people may experience feelings of rejection, social isolation, dependency, loss of control, and may also develop problems with their body image. These immense pressures can, of course, also impact carers, overwhelming them with stress and straining their relationships.

While the CAPS program could be considered small within the context of the broader health budget, the subsidy and provision of incontinence products can have a huge impact on a person's life. In addition to the social cost, this has an impact on Australia's overall health system. A Deloitte Access Economics report commissioned by the Continence Foundation of Australia estimated that incontinence cost Australia's health system around $450 million last year alone. The report estimates that further costs born by the economy generally include productivity losses numbering into the tens of billions, the costs of formal care and aids that this program assists with directly, and the burden of the problems themselves. This is why the effective delivery of this scheme to all who are entitled to it is so important.

Every year, the CAPS program helps around 130,000 Australians by providing financial support of more than $620 to each person to assist them with the cost of incontinence products. This benefit is non-taxable, it's offered on an annual or six-monthly basis and it is provided to those who are over four years of age and have permanent and severe incontinence. Earlier this year, the CAPS instrument was amended to provide for an internal merits review of decisions by the secretary of the Department of Health and, following internal review, an independent merits review of the internal review by the Administrative Appeals Tribunal. This bill amends the National Health Act to make it clear the results of merits reviews conducted by the AAT are valid. This amendment will take effect immediately after the royal assent, and it is an important administrative improvement to the program's operation and to the previous reform. The program is administered by Services Australia, who work with CAPS applications, and applicants, to resolve issues relating to their eligibility, ensuring there are very limited numbers of applicants who wish to have decisions reviewed. In instances where an applicant wants to have a review, they should be entitled to one, and this is what this bill achieves.

Resources such as continence products provided through the CAPS program work hand in hand with such things as the federal government's National Continence Helpline, which I have previously mentioned, and also the National Public Toilet Map app, which shows the location of 19,000 public toilets Australia-wide and is a resource also provided by the Department of Health. If you have a google, you'll be able to track down both of these very important information resources. These initiatives also, importantly, work alongside the NDIS funding, which the member for Macarthur mentioned, and have had such a huge impact for people suffering from incontinence. There are also state and territory run resourcing and funding schemes so that everybody receives the support they need to manage their incontinence.

We know that independent merits reviews are key to accountability and transparency in decision-making that affect Australians in many ways, and, as such, this is a sensible reform. The bill is designed to provide more support to those that need it most, and it builds upon the Morrison government's strong record of investment in health and health care. We could not afford to provide this sort of support without the Morrison government's strong economic management that allows a range of health investments such as this. Broadly speaking, the Morrison government is investing a record $121.4 billion in the year 2021-22, and $503 billion over the next four years, to provide more support to Australians as we face some of our greatest health challenges in a generation, including the COVID-19 pandemic.

I've already referred to the mental health impact that incontinence has on sufferers and also on carers, as did the members for Cooper and Macarthur. I do just want to note that we have made a record Commonwealth government mental health investment through our $2.3 billion investment in the National Mental Health and Suicide Prevention Plan. This includes creating a landmark national network of up to 57 additional mental health treatment centres and satellites for adults around Australia, as well as more centres for youth and children through the Head to Health and the headspace programs. I'm incredibly proud the Morrison government is delivering this record mental health support at a time when the nation most desperately needs it. Improving the mental health of Australians is one of the Morrison government's key priorities and, of course, it has never been more important following the impacts of the coronavirus pandemic. I know in my electorate, for example, we are already seeing the benefits that further mental health investment has, through the recently opened headspace centre in Marion, in the heart of my electorate of Boothby. We know that early intervention is essential to minimise longer-term impacts on mental health, and headspace was created to serve precisely this purpose.

The Morrison government is also guaranteeing the future of Medicare through an investment of $125.7 billion over four years, which is an increase of over $6 billion since last year's budget. It is extending a series of primary care measures in response to the COVID-19 pandemic through to 31 December 2021, including telehealth. It is continuing to implement reforms to the MBS from the Medicare Benefits Schedule Review Task Force recommendations and Medical Services Advisory Committee recommendations. The Morrison government also has a health reform agreement which will deliver more doctors, more nurses and more services across public hospitals in every state and territory. These are all completely related to making sure that people, whatever their health issue may be—but particularly on the issue we're discussing, which is incontinence—can access their GP, can call their GP if they're not able to travel at the moment or leave their house because of all the COVID restrictions that we're seeing. Our national mental health investments mean that people can access the support that they need when they need it.

I note that we are also listing a record number of medications on the Pharmaceutical Benefits Scheme. As part of our funding measures, we're also investing $43 billion over four years in the Pharmaceutical Benefits Scheme. This has an absolutely critical role in making sure people can access the medications they need at an affordable price, especially where those medications are for rare diseases and people would never be able to afford them if they had to pay the retail price on the market without the support of the Pharmaceutical Benefits Scheme. The listings that we've made recently represent an average of around 30 listings or amendments per month, or one each day, for an overall investment by the government of $13.6 billion. This reaffirms our commitment to making sure all Australians can afford the medicines they need.

We're also doing a lot of work with the medicines and technology sector to continue streamlining and deregulating processes to apply for reimbursements for new products and services. We have invested $36 million in the Health Products Portal, where we are creating a new one-stop shop for applying electronically to the Pharmaceutical Benefits Advisory Committee, the Medical Services Advisory Committee, and other mechanisms for listing new medicines and medical devices.

In conclusion, the health care of Australians is absolutely paramount. This bill is just one small part of a raft of achievements and record funding amounts that support the health of everyone in the community. The National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021 will reform the review of decisions made under the Continence Aids Payment Scheme instrument, conferring review functions of decisions to the Administrative Appeals Tribunal. It will allow for Australians who are using the CAPS, or allow their nominated representative, to apply for an independent merits review by the AAT of decisions made under the program. So it's a commonsense reform, and I commend the bill to the House.

Helen Haines (Indi, Independent) Share this | Link to this | Hansard source

I rise to speak on the National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021. This provides a mechanism for internal review of decisions of the secretary of the Department of Health under the CAPS instrument, and for independent merits review by the AAT. I want to acknowledge the contributions that have been made in the House this evening on this bill. The member for Boothby just then made the very real connection between mental health and incontinence. We know that a fear of incontinence raises anxiety and great uncertainty for people, which is directly connected to their mental wellbeing. I want to thank the member for Macarthur, who so beautifully humanised this bill. It's not a glamorous bill. It won't make a headline. Probably no-one outside this chamber but the people who really rely on these kinds of aids will even know about this. For all the work that we do in this place, it's actually bills like this that make me feel better about being an MP, to be honest.

One in four Australians experience incontinence. It's much, much more common than people think. More than 4.8 million Australians have a bladder or a bowel problem. Incontinence can impact just about anybody: women, men, children. It impacts people from all walks of life and at all stages, as we've heard this evening: young and old, expectant and new mothers, and the elderly. Sadly, though, over 70 per cent of people with urinary leakage never seek advice or treatment for their problem. They're embarrassed and they put up with it as best they can. In my long career in health care prior to coming here, I stumbled upon this with people I met coming into hospital or into health care for other reasons—their embarrassment when they had to undress and it was revealed that they had homemade continence products because they'd never sought any help.

Incontinence impacts people's social and emotional wellbeing and their ability to engage with their community. Some people with the condition haven't gone out for years. They can't go grocery shopping. They've relied on family members to support them with their essentials. There are plenty of people who never play sport or who won't go to a concert for fear that they can't sit through the length of the concert. There are people who don't go out because they know that there's no public toilet anywhere near where they live. Again, I was pleased to hear the member for Boothby talk about the app that helps people find a public toilet. It's such a basic thing, but so important if you need it. There is so much stigma still associated with incontinence and, sadly, it prevents people from seeking help for what we know is a really commonplace problem that actually can, in many cases, be managed and, in some cases, be completely fixed.

Under the CAPS, an annual or six-monthly payment is available to people over the age of five who suffer from permanent and severe incontinence caused by particular kinds of conditions specified in the CAPS instrument, and who meet other eligibility criteria. These payments help offset the costs of purchasing incontinence products from a supplier of choice. Again, anyone listening to the member for Macarthur might have been very surprised at how expensive these continence pads are. Introducing a review mechanism is a really sensible change, and highly commendable and wholly commendable, and I'm grateful to the government for doing this. There should always be accountability when a government bureaucrat makes a decision about a matter which affects a person's rights and entitlements, and, in this case, such a basic right and entitlement. There should be the right to challenge it on the grounds that perhaps it's wrong.

This government, by its own admission, said that CAPS participants are unlikely to utilise the review pathway of Services Australia, who administers the program and often works with CAPS applicants to resolve issues. Further, the Continence Foundation of Australia points out that participants are really unlikely to bother going through a bureaucratic process when the annual maximum payment for these products is only $635.10. Many of these people say it's just not worth the time and the fuss.

While one in four Australians experience incontinence, only about 135,000 people are actually eligible for this CAP Scheme. Some are deemed ineligible for CAPS because their health professional hasn't described the condition in the precise way required by the scheme. I really support calls for the decision-making around eligibility for the scheme to be more transparent. Perhaps there needs to be some education of our GP workforce around the precise definition so that they can describe it in the way that is required. We need transparency, with an annual publication of statistics around the use of the scheme, including waiting time for a decision and the number of new applicants. We need to know this because if we know this we get a better understanding about what's happening in our public health system and perhaps where there's greater prevalence than we ever thought. We need transparency around the total number of ineligible new applicants or participants and the grounds upon which they're denied access. That's really important.

As I've said, continence care is expensive. The Continence Foundation of Australia says it receives over 6,000 calls to the National Continence Helpline every year from callers seeking financial assistance and trying to get help with the cost of continence products. Callers regularly report financial stress, particularly in that period leading up to the annual payment in July, because the CAPS provides for less than a quarter to a third of their annual expenditure on continence aids. It's estimated that $1,698 is the expense for someone who uses around 18 incontinence pads per week, and we know that there are some people who require many more than that. Incontinence is not only a huge personal cost but also a huge cost to the economy. A 2010 Deloitte report estimated the cost of incontinence to the nation at around $67 billion, and that includes money spent on health systems, productivity loss in the workplace and in employment, aged care and carer costs.

I really support the calls from the Continence Foundation of Australia to review the CAP Scheme as a matter of urgency to address the following things: (1) the adequacy of the payment in meeting the hygiene and dignity requirements of Australians living with permanent and severe incontinence; (2) the adequacy of the payment in ensuring Australians living with permanent and severe incontinence do not experience financial stress or hardship due to expenditure on continence aids; (3) establishing a mechanism for regular review of the schedule of eligible conditions causing permanent and severe incontinence; (4) review of the policy rationale for the difference in eligibility for CAPS between neurological conditions and other health conditions causing permanent and severe incontinence; and (5) review of the pension card requirements for CAPS applicants with non-neurological conditions, including comparison to other schemes, such as the Stoma Appliance Scheme, which provides free stoma appliances and products to nearly 50,000 Australians—quite a big difference.

I'd also like to turn the House's attention to the Royal Commission into Aged Care Quality and Safety findings. The aged-care royal commission looked into the prevalence and treatment of incontinence in residential aged-care homes. It heard that 75 to 81 per cent of all the people in residential aged-care facilities live with incontinence—that's a very big number. The royal commission also reported that it heard that staff members don't have the time needed to assist residents to go to the toilet in a timely manner, and too often there's actually routine use of incontinence pads to manage workload—again, when we think about people's dignity, a fundamental dignity is to be able to go to the toilet.

I've worked in aged care and I've been the director of an aged-care facility, so something I'm very aware of is managing workload. Many of our elderly people, of course, are frail. It's difficult for them to walk. They need assistance to go to the toilet, so those findings from the royal commission are really, really worrying. Again, it speaks to the urgency that we have as a nation to get cracking on the findings of the royal commission and make sure that we've got the workforce in our residential aged care to provide the most fundamental element of human dignity: going to the toilet.

We need our aged-care workforce not only to have the numbers to provide that kind of care but also to be adequately trained so that they can respond to the needs of people with incontinence, so that they can provide that dignity and respect and so that our elderly have the best possible quality of life that they can. The 2021-22 budget included an investment to support an additional 33,800 training places for personal care workers to attain a certificate III in individual support in ageing, and it's crucial that continence care is part of any training and education. The Continence Foundation of Australia has recommended that incontinence is recognised as requiring both basic and specialised care and support, and is incorporated into the foundational courses for aged-care workers. This needs to be back on the curriculum, but it's fallen off. This is so fundamental. It's fundamental so that both the current and the next generation of care workers are suitably qualified and trained in safe and effective continence care and incontinence management. Continence care includes things like nutrition and hydration. It's about recognising signs and symptoms of bladder infection. It's about recognising signs and symptoms of muscular dysfunction. There are many elements to this; it's not straightforward. Until recently, Australian registered nurses seeking to specialise as nurse continence specialists had the option of undertaking one of two post-graduate courses. Sadly, these graduate courses are no longer available, and there's little scope for registered nurses to gain the necessary specialised knowledge required to become a competent nurse continence specialist. The Continence Foundation of Australia is calling on the government to ensure that these courses are placed back on the national curriculum, and I join the foundation in that call. It is projected that, by 2030, 6.2 million Australians will be living with incontinence. Despite the growing prevalence, there's currently no funding commitment or action plan from the federal government beyond June 2021. I said tonight—and I mean it—that the government are doing good work in this space, but they need to fix that. They need to make sure that there's ongoing funding.

I'd like to recognise some of the champions out there who are working to provide fantastic support for people who suffer from incontinence. Continence nurses are key to this, as are physiotherapists. They enter people's lives with compassion and without judgement. They're people like the member for Macarthur, who shows such humanity. They talk about an issue that, for many people, they will be discussing with them for the very first time. They listen carefully, they provide advice and they go on that journey with these people to make sure that these people are getting continence care that fits with their lifestyle. It takes a pretty special person to do this. I know a few of them: Nicci Malcolm, at Northeast Health in Wangaratta; Kath Thomas, who's a physio and has been working in this area for a long time; Deborah Gregory is also a nurse who's been working in this area for decades; and Associate Professor Helena Frawley, a specialist academic who's looked at this area for many years. She has been a leader in research and the training of many physiotherapists.

I also want to recognise that there are some fantastic programs in my electorate that are doing really good work on incontinence awareness. Gateway Health ran a bladder health education program in Wangaratta and Benalla earlier this year. They educated participants, who learnt about how bladders and bowels actually work and how to keep your bladder and bowel healthy with the skills to manage urinary incontinence. Northeast Health in Wangaratta announced during World Continence Week in June that it's supporting the BINS4Blokes initiatives, which promotes the installation of incontinence bins in male public toilet facilities. At Northeast Health in Wangaratta, they will provide bins for blokes in male toilets right throughout the health service—good on them. Gateway Health's Below The Belt program for local men is also a terrific program. It looks after men's incontinence and chronic prostate health. Many people don't realise that men who've undergone a radical prostatectomy very often suffer from incontinence for some time after that surgery. The Below The Belt bladder health program provides men in the community with an opportunity to explore a variety of treatment options to suit their individual needs and helps them to develop a plan that's really going to make a difference to their lifestyle. At Albury Wodonga Health, they're absolutely in this space as well, with their continence nurse advisory service, which has outreach to many small rural towns as well. In conclusion, as I said at the beginning, this is an important bill. It's not a glamorous bill, but it's an important bill, and it brings to this chamber the voices of many people who are never heard. I thank the government for this work and I commend the members who've had something to say on this bill. I commend the bill to the House.

Ken Wyatt (Hasluck, Liberal Party, Minister for Indigenous Australians) Share this | Link to this | Hansard source

I present an explanatory memorandum to this bill.

I thank all those members who have spoken on this issue. It's one we often overlook if we're not involved within the sector or the industry. We often forget about the impact it has on the social, emotional and mental health state of an individual.

The National Health Amendment (Decisions under the Continence Aids Payment Scheme) Bill 2021 makes amendments to the National Health Act 1953 to expressly provide for the Continence Aids Payment Scheme Instrument 2020, the CAPS instrument, to confer review functions on the Administrative Appeals Tribunal, the AAT.

On 16 January 2021, the CAPS instrument was amended by the Continence Aids Payment Scheme Amendment (Merits Review) Instrument 2020 to provide for internal review of decisions by the Secretary of the Department of Health under the CAPS instrument.

The merits review instrument also enables CAPS participants or their nominated organisation affected by the secretary's internal review decision to apply for an independent merits review by the AAT of the initial review decision made by the secretary.

The bill's amendments to the act will validate AAT review decisions made under the CAPS instrument.

I thank members for their contributions, and commend the bill to the House.

Question agreed to.

Bill read a second time.