Carers in 2020

11 November 2020

This year has been tough. Australians have faced the Black Summer of bushfires, floods and of course the virus. It's often said we're all in this together when we're not. This virus has exposed fault lines in society, and the most vulnerable Australians are falling through the cracks—Australians most at risk, struggling before the virus and not helped by the government's response.

Through COVID-19, unpaid carers of children with disability, frail elderly parents or partners with chronic and complex health problems have taken on more responsibility as formal support falls away and wait times grow. Carers are ordinary people, people like you and me, helping someone they love. As my mum says, 'You don't sign up to be a carer. You do it, because you love them.' They're fearful of this virus and its risks to their loved ones, particularly frail elderly parents. They're struggling to pay the bills as costs climb and they're forced to cut their hours or leave work altogether because of their growing caring responsibilities.

It's estimated there are close to 906,000 primary carers providing an average of almost 35 hours of care per week. That's almost a million Australians providing 35 hours of care per week. The value of that informal care across Australia is estimated to be close to $78 billion. That is the replacement value of that care they're providing. Yet, at the same time, the government's financial support for carers is only a tiny fraction of this amount. It's no surprise then that so many carers I've heard from feel invisible and overlooked by the government. They don't do this because they're seeking recognition or acknowledgement, but they do need to be treated with dignity and respect and be given the proper support to provide care to their loved ones.

In the lead-up to the budget, I heard from carers and advocacy groups across Australia about the impact of COVID-19. The feedback was worrying. Carers were expressing their concerns at the toll taken on their physical health, mental health and financial wellbeing throughout COVID. Most carers across Australia are women, many of them are in their 50s and most of them have their own health or financial problems to deal with on top of their caring responsibilities. This has been borne out in a survey of carers, which ran from April to July, conducted by Carers NSW. It backs up these views. It found nearly half of the respondents were experiencing a high or very high level of psychological distress, and one in three felt highly socially isolated. Caring is a lonely responsibility; it leaves people isolated, cut off from friends and family and other support, especially during COVID.

One in three carers said they never get time out from their caring responsibilities, ever—it's 24/7; it's around the clock, whether it's for a child with a disability, a frail elderly parent or someone with a major mental health problem who is at risk—and only half of the respondents have enough time to keep on top of their other responsibilities. My friend Bev is a carer who is looking after her husband Steve, who has young onset Alzheimer's. He's awake through the night, and needs constant reassurance and support to know that he's safe and that he's okay at home.

Critically, the Carers NSW survey found many carers are experiencing difficulty getting information. Worryingly, up to one in three carers had found it difficult to get information about services or to organise services to support the person they care for. It's hard enough outside of COVID, but in the middle of a global pandemic it has become even worse for carers trying to access the critical practical support they need each day.

This survey result goes to the heart of the government's measures: one in four carers reported spending more money than they made in the last 12 months. That many carers are going backwards financially is disturbing. The small amount of additional support provided to carers in the budget—two payments of $250, spread over six months—isn't enough. Many carer payment recipients are of working age and rely on part-time work to support themselves, and, as I've said, they've lost work due to increased caring responsibilities and the economic downturn.

Minister, my question to you is, given the toll on carers, will the government provide additional financial support to carer payment recipients as a matter of urgency; address the shortages in respite care for carers desperate for a break; consider ways to reduce barriers to carers accessing help through the carer gateway, which was intended to enhance, not hinder, support; and consider performance targets for the gateway that focus on quality and carer satisfaction, not just the number of people accessing the gateway? Minister, in the middle of a recession and a global pandemic, carers and those living with a disability deserve better from you and this government. They feel invisible and overlooked. They deserve compassion and consideration.

NDIS Concierge Model

19 October 2020

The NDIS was designed to support people living with disability and improve their quality of life. But just last week I have learned of the latest way it is letting people down. The so-called concierge model of supported disability accommodation is sold as being available quickly to a number of dwellings inside the one building. In fact it is leaving higher-needs NDIS participants out just as they thought they could move into a new home that they had waited for years to be built.

Matthew is a 40-year-old with quadriplegia who lives in The Entrance in my electorate. In September 2019 he applied for supported disability accommodation, which was approved finally in January this year. After repeated follow-up with the NDIA by his mother, Christine, the supported independent living package to go with his housing was approved on 25 September. The funding was to be in his plan within 48 hours. It never arrived. Matt was told he could move into his new home on 12 October. He was ready. He had sold his furniture, packed up his old house and had the phone and power connected at what was to be his new home. Then came the news about the concierge model, which can't meet Matt's needs. He was devastated. Matt said that after hearing the news he thought about throwing his bus pass into the lake and catching a one-way ride into the CBD, because he was sick of being a burden on his own family.

Matt deserves better. The minister must come clean about the secret trial which is leaving people with disability out in the cold. This government, which ripped $4.6 billion out of the NDIS, is still trying to slash funds and squeeze plans at the expense of Australians living with disability.

National Disability Insurance Scheme Amendment

By Emma McBride MP

07 October 2020

I rise to speak on the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020 and support the amendments moved by the member for Barton. I'm pleased to follow my colleague the member for Oxley and recognise his advocacy for the vulnerable people and those living with disability and their families and carers in his community.

The bill seeks, as others have mentioned, to broaden the circumstances in which the NDIS Quality and Safeguards Commissioner may make a banning order against a provider or person and clarifies the commissioner's powers. The bill addresses some timing issues and shortfalls in the NDIS commissioner's ability to make banning orders against a worker who is no longer employed or engaged by an NDIS provider. The commissioner's ability to make a pre-emptive banning order against a person who has been identified as unsuitable to work with people with disability as a result of their actions in another field is also addressed. The changes allow the commission to make a banning order against a provider's former employee or staff and prevent the lapse of a banning order if the employer ceased to be engaged or the provider leaves the sector.

The amendments will also empower the commissioner to include details of the order, including enough information to identify the person in the publicly available NDIS provider register. While I acknowledge the government's intention to address specific areas where the NDIS Quality and Safeguards Commissioner's powers are too narrow, it has taken the government two years to act and introduce this amendment to the House.

The NDIS Quality and Safeguards Commission has monitoring powers under the Regulatory Powers Act to enter premises voluntarily to, administer the NDIS Act and to seek monitoring warrants if entry is refused. The commission has significant powers under the National Disability Insurance Scheme Act to issue compliance notices, injunctions or civil penalties or vary, revoke or suspend registration of providers or make a banning order prohibiting or restricting specified activities by a provider or a person employed or otherwise engaged by a provider.

Shortly after his appointment as NDIS Quality and Safeguards Commissioner in 2018, Grahame Head gave a speech in which he said:

We're able to take a range of actions including deregistration, banning orders or seeking the application of civil penalties so we really do have a comprehensive tool kit.

We have comprehensive regulatory powers and functions, and real regulatory teeth.

If only that were so. However, in the last two years there have been 2,473 complaints made to the commission, and the commission has only issued 23 banning orders. It's clear the commission is not exercising the full extent of its monitoring powers nor its powers to penalise non-compliant providers, and this is putting vulnerable people at risk.

Labor notes the Minister for the National Disability Insurance Scheme—I note the minister's presence in the House—said in the second reading of this bill:

The recent tragic circumstances surrounding the death of Ann-Marie Smith in South Australia have highlighted just how important it is to have the strongest possible protections available for NDIS participants.

And it is. And it must be.

As others have noted in this House, Ann-Marie Smith's death is a tragedy. While supportive of the changes, the bill does not address the underlying problems. Importantly, even if these amendments were in place at the time, they would not have prevented Ann-Marie's death. The change proposed by the government to make a pre-emptive banning order against a person identified as unsuitable to work with people with disability as a result of their actions in another field would have prevented Ann-Marie's carer from becoming her carer, but there is no guarantee that her death would have been prevented as the bill does not contain measures addressing the lack of oversight which could allow any carer to perpetrate similar abuse.

The National Disability Insurance Scheme is vital. The National Disability Insurance Scheme is lifting the quality of life of so many Australians living with disability for their carers, for their families and for their loved ones, but it is falling short and, tragically, the mismanagement and underinvestment by this government has sadly led to the death of Ann-Marie Smith and to the neglect of many others who are in the care of this government.

Labor was relieved when the government heeded our calls for an independent investigation into Ann-Marie Smith's death.

Labor called on the government to broaden the inquiry to review the case of David Harris, whom other people have mentioned, an NDIS participant who was found dead in his house more than two months after his supports had been cut off.

While we recognise the inquiry was a good start, it has fallen short and it is clearly too limited. The inquiry needed to be free to look at broader considerations, such as whether the $30 million-a-year commission has been a toothless watchdog across multiple cases—not just the case that has brought this amendment to the House, not just the case of Ms Smith's provider—where the deaths in home by neglect of NDIS participants have been exacerbated by the removal of $4.6 billion from this scheme, as so many others have mentioned. When we have so many vulnerable people, so many people waiting for the support that they need, when we have seen so many delays, when we have seen so many errors, how can this government stand by and allow this to happen?

There also remains a clear conflict of the commission appointing the investigator and the investigator reporting back to the subject of their inquiry. The investigator needed subpoena powers, and disability advocates should be supported if they wish to engage with the process. We welcome the appointment of the investigator, who is, at least ostensibly, separate from the NDIA, but this is not enough.

As we know, the Robertson report was released at the end of August. The review found there was no wrongdoing when the commission set out to protect NDIS participants and issued a meagre fine of $12,600 for failing to notify the commission of Ann-Marie's tragic death. We now know that this is the only infringement the commission has issued in two years of operating—the only infringement. During the coronavirus pandemic, the commission has contacted NDIS participants on only one occasion, in a joint letter that participants received in early September. Disturbingly, witnesses at the recent hearing of the inquiry into the NDIS commission overwhelmingly told the NDIS joint standing committee that most people have never heard of the NDIS commission. Most people don't know it exists. How can people receive support from it if they don't know it's there to protect them? How does this work in practice if a person has an issue with their provider but doesn't know that they can get support through the commission? They don't know it exists.

The NDIS commission only regulates providers, and the NDIA is set up to administer the scheme to participants. Justice Robertson says the two agencies are not sharing information and acknowledges that, without this communication, people could easily fall through the cracks between these silos. The government has a responsibility that it can't walk away from—a responsibility to help NDIS participants understand the role of the commission and their rights if they experience problems with their providers. But, sadly, after years of funding cuts and neglect and mismanagement, people are dying of neglect in their homes and not receiving the support they deserve.

I'm going to turn to some local examples. I know so many of us have had so many people come to us when they have been let down, when they haven't received the support that they deserve and that they need. Wendy from Chittaway Bay in my electorate needed home modifications for her wheelchair so that she should stay independent in her home. She applied for NDIS funding. As a participant, there were several quotes presented to the NDIA. The quotes ranged from $41,200 to $80,000. The agency settled on the lowest quote, despite Wendy's concerns about the builder.

When the building work started, Wendy did the right thing and contacted the local council about certification and was advised the builder hadn't submitted a construction certificate. Wendy was then faced with threats from the builder to pull the modifications down. She then lodged an application with New South Wales Fair Trading and, later, NCAT. When consent orders of $65,000 were reached, the builder made an admission—he wasn't qualified to do the home modifications and had no builders home insurance. This was the builder the agency had chosen to do the modifications on Wendy's home.

This has been ongoing for five years, and Wendy had been left with a house that's considered unsafe because it can't be certified, and unsaleable. She's also been billed almost $15,000 in pursuing this through an NDIA recommended lawyer. Because of the choice of the builder by the NDIA, Wendy has been through New South Wales Fair Trading, the NDIS Quality and Safeguards Commission, and NCAT and is living with the personal and financial consequences of this mistake. It shouldn't be so hard for somebody like Wendy to get the home modifications she needs to be independent and safe within her own home.

I now turn to Margaret from Bateau Bay. She recently contacted my office concerning her prosthetic limb, which was provided under her NDIS plan. It's a prosthetic leg that doesn't fit. After trying to negotiate with the provider, she's been asked, personally, to pay more to fix the prosthesis. This is money that Margaret doesn't have and shouldn't have to pay. Mistakes happen. But, when they do, processes should be in place to fix them, and people like Margaret should not have to foot the bill to pay for the NDIA's mistakes.

I'm now going to turn to carers, because we know that so many carers have been so impacted through COVID-19, and carers of people living with disability, particularly children with disability, have been particularly vulnerable. Next week, as we know, it's National Carers Week. I would like to thank all of those carers across Australia for the unpaid care that they provide so generously and without any recognition. They deserve to be acknowledged.

When the NDIA fails, it's not just participants that are affected; it's their families and carers that are impacted as well. A recent survey by Mental Health Carers Australia on the impacts of COVID-19 on NDIS participants with psychosocial disability found provision of NDIS supports for participants, families and carers had dropped significantly. Sixty-one per cent said lockdown had impacted NDIS supports they'd received, and 80 per cent had not been in contact with their NDIA provider regarding their plan. The survey found families and carers had stepped into the breach left by providers and it was impacting their mental health. Seventy-five per cent of these carers were concerned about their family's mental health, and 65 per cent were concerned about their own emotional wellbeing.

Nearly 50 per cent reported their caring roles increased significantly, to more than what they could cope with. Unsurprisingly, 73 per cent of these carers were aged over 50, and nearly all of the respondents to the survey were women. For many of them, the day-to-day expenses increased by over half, and most of these carers are retired or working part-time because of their caring responsibilities. Finally, the survey found that carers were an at-risk group: more vulnerable to COVID and more likely to be struggling financially. These figures provide just a snapshot, a little insight, into the carers of people receiving NDIS support for psychosocial disability. They reflect the strain being felt by the wider carer community.

The Caring Fairly Coalition Caring during coronavirus survey highlighted the impact of the virus on the carer community. Sixty per cent of carers reported losing some or all of the support for the services for the person that they cared for, and four in five said that their mental health had deteriorated since COVID-19. Nearly 90 per cent had experienced increased stress in their role as a carer, and close to 40 per cent reported losing some or all of their regular income. Given these impacts, it's no surprise that less than six per cent of carers reported that the Australian government was providing enough support for carers during the pandemic. It's not hard to see why carers feel overlooked. It's not hard to see why carers feel they've been left behind. Unpaid carers, Minister, should not have to pick up the slack for the government's failure to manage the NDIS.

The NDIS was built by Labor. Since it was introduced, it has helped people across Australia living with disability to have a better quality of life. However, over the past seven years, it has been mismanaged. It has been neglected. People—sadly, tragically—have died of neglect in their own homes. People in my community have been left behind. People in my community are struggling. People in my community who are living with disability have been overlooked by this government. And it's people in my community and their circumstances that reflect those of people across Australia. People living with disability and their families and carers have been left behind by this government, Minister. They deserve better. Nobody should be left behind by this government. No vulnerable person, particularly during COVID-19, should be left desperate to the point that they believe their own mental health and wellbeing are at risk because of their disability or because of their caring responsibilities. It is not good enough, Minister. They deserve better. They deserve better from you, and they deserve better from this government.

The government talks about the NDIS being fully funded, and it ripped $4.6 billion out of the scheme.

Mr Robert interjecting—

You, Minister, have oversight of this. You, Minister, are responsible for this. People with disability in my community and across Australia deserve better from this government. They deserve dignity, they deserve respect and they deserve empathy. That's what they deserve.