NDIS Amendment

Labor welcomes the introduction of the National Disability Insurance Scheme Amendment (Strengthening Banning Orders) Bill 2020. The bill seeks 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. After the first reading of this bill, the minister stated:

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.

I won't go over the details of Ms Smith's death again. Previous speakers, particularly the member for Barton, have eloquently detailed those tragic circumstances. Suffice to say, we know there was an absolute failure of the system.

The National Disability Insurance Scheme is a vital national service, intended to be the most significant economic and social reform in Australia for more than a generation. Unfortunately, the NDIS has not lived up to its full potential of delivery of quality services to people with disability. Mismanagement at the hands of this government has meant that we are still tinkering with the legislation, still amending the scheme, still hearing far too many horror stories of people falling through the cracks. Minister Robert has so far presided over $4.6 billion being ripped out of the NDIS and 1,200 Australians with disability dying while waiting to be funded by this scheme.

There are more than 8,000 NDIS participants in Tasmania, more than a third of whom reside in the Derwent Valley in my electorate. It is of the greatest concern to me that even one of these people may not be getting the support and services they need or, worse, that there may be incidents of serious injury, abuse or neglect that are going unreported or ignored because of systemic failures. Recently my office had the opportunity to meet with Greg Harwood, a director of Access Coordination Tasmania. I sincerely thank Greg for sharing his knowledge and expertise and helping me and my staff better understand the issues facing the NDIS, especially in Tasmania. Greg and his partner, Suzie Marston, operate Access Coordination Tasmania, a small NDIS provider based in regional Tasmania primarily delivering NDIS support coordination and service development to NDIS participants. Greg explained that a large part of the business for their eight staff is working towards getting people's NDIS plans up and running within eight weeks of the plan being approved.

So I was shocked, dismayed and angered to learn that it is not uncommon to have months of delays in plans being implemented. One young family, who have had their son's NDIS plan in place since December 2019, was only recently referred to Access Coordination Tasmania and connected with support coordination. That's nine long months in which funding has been parked, of no benefit to anyone—nine months of uncertainty. I'm told that this plan will now have to be reviewed to meet their needs. It just is not good enough. Unfortunately, delays such as this are inevitable when the system is so drastically underresourced. Working day to day on the ground in the sector, Greg said it was clear that the disability workforce is increasingly casualised and reliant on frontline staff who may not have the training, experience or support to deal with high-risk clients. I have previously mentioned in this place concerns raised by the Health and Community Services Union, which represents disability workers, that work in the disability sector is increasingly insecure because of the nature of the NDIS model, where fixed-term contracts and yearly funding reviews are industry standard.

We know that the intention of the proposed amendments to the NDIS Act, from the Tune report, is to address the length of plans. However, we are yet to see that this will be the case. This is a workforce that has often been undersupervised, working across multiple locations and without the oversight mechanisms in place to ensure that reporting and regulatory requirements are properly carried out. The government has not invested in the workforce or the infrastructure that supports that workforce to make this scheme work as well as it could and should. We know that frontline staff such as disability and aged-care workers are some of the lowest-paid in this country. Overwhelmingly they are women. Yet we place them in extremely physically demanding and high-stress situations where they are responsible for the welfare of our most vulnerable citizens.

Agency and NDIA staff are also impacted. One of the main complaints to my office is that there is no consistency for clients as to whom they deal with through the NDIS. It's a lottery on the phone. This is very much a consequence of the federal government's decision to understaff the NDIA, with 3½ thousand staff when it commenced instead of the Productivity Commission's recommendation of a minimum of 10,000 staff nationally. Families might deal with three or four people about their plan and have to explain the same issues over and over again. The gap between people who have local area coordination services, and agency assigned planners, and those who need to move between them creates much of that turbulence. A high turnover of staff, minimal training and a huge volume of work for agency staff means it is just not possible to develop specialist knowledge.

Access Coordination Tasmania suggests there should be planners in every region and they should have more specific training and knowledge of the most common and challenging disabilities in their regions: local knowledge on the ground. In Tasmania, as well as having impacts on the workforce, under-resourcing also means there are a lack of facilities and services within the community that provide the specialist disability supports and care that many people accessing the NDIS require. In particular, a severe shortage of high-support-needs short-term accommodation for people with challenging behaviours results in families with no support options.

Some of the 8,858 NDIS clients in Tasmania end up in hospital because appropriate discharge and specialist supports in accommodation are not readily available. This has been exacerbated by the impacts of COVID-19. NDIS clients were rushed out of hospital and into accommodation that was intended for that purpose. One respite centre in the north of Hobart, for example, has been reportedly full for more than four months, preventing others from accessing this service—even though it does not provide the high-needs services that many of these clients need, which is why they're in hospital or other settings in the first place. Another example is the lack of readily available respite for people with motor neuron disease or Huntington's disease, despite Huntington's in Tasmania representing the second-largest cluster of people in the world with this disease. Access Coordination Tasmania spent last year working to find suitable short-term accommodation for one participant who has been in the Royal Hobart Hospital for seven months, waiting for respite. The pandemic has further highlighted this issue of a lack of facilities and supports available to people with a disability and their families within the community.

For service providers such as Access Coordination Tasmania, so many of the ongoing issues with the scheme come down to underresourcing of the workforce, of the agency, and of educating the mainstream community about what the NDIS does. Greg made the point that this particular social reform, the implementation of the NDIS, lacked public messaging or effective advertising about the scheme, undermining its very intention of supporting Australians with a disability to fully participate in mainstream society. The lack of understanding from the general community—despite the general community having an overwhelmingly positive attitude towards the NDIS as a whole—and particularly from mainstream support services about the responsibilities of the NDIS is one of the main issues that face providers like Access Coordination Tasmania every day. The government simply hasn't done enough to inform people what about the NDIS does, and how it does it, and what it should be doing. Greg said that he often must explain to mainstream services—like housing, justice, aged care, home services and mental health et cetera, agencies that should be better informed—just what client responsibilities are theirs and what the responsibilities are of the NDIS.

Recently, for example, a client of Greg's with Huntington's was returning home to Tasmania from Queensland and was required to undertake 14 days of hotel quarantine. Access Coordination Tasmania contacted the state government to advise the state controller of the specialist needs and support required for this client. Unfortunately, those required supports were not put in place and the end result was this gentleman being put in a taxi and sent home. Greg says this is just one of the many examples he has where mainstream services are not clear on what their duties are. Instead, they expect NDIS to take on a responsibility that may not be theirs and, ultimately, leave a client without the support or care they need.

The Carers Tasmania 2019 NDIS satisfaction survey tells a similar story. There are still many carers who appear to be overwhelmed, distressed and/or disillusioned with their experience with the NDIS. More than 20 per cent said that there had been little or no improvement since they first engaged with the NDIS and 75 per cent of those caring for a person assessed as ineligible for the NDIS stated that they had no contact with the local area coordinator, despite the fact that one of the roles of a local area coordinator is to assist those ineligible people to access supports in the community. Carers feel dismissed, unclear about how they can be involved and unsure where they fit in a system designed to give the person with the disability choice and control.

This bill is a step in the right direction, but it is clear that there are fundamental systemic issues within the NDIS that need to be urgently addressed. I note that the NDIS Quality and Safeguards Commission report into the death of Ms Smith suggests that steps need to be taken:

… to identify earlier those people with disability who are vulnerable to harm or neglect. Every stage of decision-making, including corrective regulation, should be alive to factors indicating that a participant may be vulnerable to harm or neglect.

…   …   …

(2) No vulnerable NDIS participant should have a sole carer providing services in the participant's own home. The relevant statutory instruments and guidelines should be amended to provide expressly for this.

(3) For each vulnerable NDIS participant, there should be a specific person with overall responsibility for that participant's safety and wellbeing.

There are broader questions too that need to be addressed. From what I am hearing from providers and NDIS clients there is certainly an argument to be made that the role of the commission can be strengthened. Access Coordination Tasmania would like to see more regular community visits from the commission, including random spot checks and an improved feedback system. Participants living on their own or with a single parent should receive higher amounts of diverse supports and not rely on a single service to own that responsibility. The government must provide answers and outline what it intends to do to ensure that the commission's powers are being properly used to prevent abuse and neglect, not just issue a slap on the wrist after the fact.

The National Disability Insurance Scheme is a vital national service, but after seven years of Liberal rule and mismanagement it has been slashed and mismanaged to such an extent that people are literally dying of neglect in their homes. The minister needs to get real and start acting in the interests of Australians with a disability. Australians pay their taxes so that when they are vulnerable they are not left to die in squalor. This kind of system failure resulting in death by neglect needs to be approached head on with honesty, genuine reform and enough money to get the job done.