Motion
HON ALISON XAMON (North Metropolitan) [1.08 pm]: I move —
That this house notes —
(1) the significant impacts on people with disability and their families of ongoing uncertainty about which form of the National Disability Insurance Scheme will be adopted in WA;
(2) whether the government decides to adopt the NDIS or the NDIS My Way model, it is imperative that those whose lives will be most affected by the decision are kept informed in an ongoing and meaningful way;
(3) that, furthermore, it is essential that a co-design model for engagement that involves people with disability and their families in the design of governance, policy and operational aspects is developed to inform the delivery of whichever scheme is agreed to;
(4) the significant uncertainty in the funding of disability services in WA, and calls upon the government to put mechanisms in place to ensure —
(a) that people with disability and their representative organisations are included in governance structures and inform service delivery design; and
(b) that the decision-making process is fully transparent.
I would like to begin by acknowledging the enormity of the reform that is the National Disability Insurance Scheme. In fact, the NDIS is often referred to as probably the largest social and economic reform since the introduction of Medicare. I certainly remember vividly the level of energy and campaigning that came from the disability sector in lobbying for this desperately needed reform. Many members here may remember the “Everybody Counts” campaign, how significant that was and how important it was that the community responded to that and listened to what people with disability were saying they needed with the delivery of services in order to ensure that they could lead the best lives they can. It is a really important reform. It recognises that people with disability know what is best for themselves, and provides the capacity for people to have a significant say on what they believe are the most appropriate services to enable them to lead their best lives. I pay tribute to the people who fought so hard for this ongoing reform. However, as I think has been well documented since the decision to proceed with the National Disability Insurance Scheme was finally made, introducing change of the magnitude we are talking about—it is significant—represents considerable implementation challenges. That has certainly proven to be the case. I suggest that Western Australians are probably more aware of that than most. Effectively, the decision on whether we would join the national scheme or go with a state-based scheme has been hanging over people’s heads since 2013.
Earlier this year, during the state election campaign, it seemed that a resolution had been arrived at by the Barnett government. It signed what really was, we have to acknowledge, an eleventh-hour bilateral agreement with the commonwealth, making the decision to implement a WA version of the scheme. I think it is really important to note that this was not met without significant controversy. Some people felt very, very strongly that we needed to go with a federal scheme and some felt it was the right decision to go with a state scheme, but in any event, the overwhelming sense I got from the disability community—at that point I was working within the area of psychosocial disability as an advocate, so I was one of the people who was very involved in terms of my concerns around this —
The PRESIDENT: Members—sorry, Hon Alison Xamon—there is a little bit of chatter going on around the chamber. It is actually making it difficult to hear Hon Alison Xamon.
Hon ALISON XAMON: Thank you, Madam President. Yes, it was getting very loud, which is a shame because this is a really important issue and every single one of us has constituents with disability that they might want to think about.
I am aware of a particular concern that there had been a significant lack of consultation with the disability sector— with people with disability—about the last-minute decision to sign the bilateral agreement. There is still huge concern about it because people are still completely unaware about the scope of that bilateral agreement. That really needs to be remedied as a matter of urgency.
From the outset, I say that that decision was not particularly good around process or engagement with people with disability and their families. I flag that I think there has been a problem with the culture of the Disability Services Commission that has been an issue over successive governments around an inability to appropriately engage with people with disability. I suppose that will be a key part of what I want to talk about on this motion.
We know that despite a decision being made to sign a bilateral agreement to go with a state-based system, the uncertainty has continued. The newly sworn Labor government undertook to conduct a review of the decision. That, I suppose, reflects the fact that people were expressing concern about the decision to go with the state-based system. I have been led to believe that one of the factors behind that has been about unpicking the financial implications of that decision, and perhaps the concerns around accumulating further debt after the decision to go with a state-based system. But because it is so many months down the track since that decision was made—we are talking a very long period—all it has meant is that the uncertainty is continuing. Certainly the very clear feedback I get is that people want a decision made once and for all. They want to know what on earth is going on. They want transparency around how and why that decision is made, and most importantly they want to be involved in that decision-making process.
It is seven months to the day that the government came to office and announced its review of the NDIS in WA, on top of an extended period of uncertainty for Western Australian people with disabilities and their families. The Australian Capital Territory was the first jurisdiction to start it off in July 2014, and the full rollout of the NDIS for the rest of the country began in July 2016. We are really behind the eight ball on this.
I do not want to underestimate the impact this uncertainty is having on people. It has been profound. People with disability and their families are reporting back time and again that they are experiencing anxiety, and that the uncertainty of what will happen and what they can expect is becoming just untenable. Service providers have reported back ad infinitum the damage that being in limbo is having on their organisations. That uncertainty has been heightened even further since 1 July, when the rollout of the WA NDIS began. Overarching all this uncertainty is the looming likelihood of having to abandon any work being done at the moment—a lot of work is not being done, and that in itself is problematic—because of the likelihood of transitioning to a new system. Public servants working in the area of disability report back that the change of government, followed by the machinery-of-government amalgamations, which for the DisabilityServices Commission have not been insignificant, as well as turnover in senior level positions at the DSC and also the ongoing ambiguity about the future of the NDIS, has effectively created a perfect storm in terms of chaos.
I am particularly concerned that necessary policy work that needs to be urgently done to support the implementation of the NDIS is not being done. I also know that local area coordinators are understandably struggling in the face of all this turmoil and uncertainty. Services that should, theoretically, be available now are not being promoted or accessed. For example, even though Western Australians are eligible to access specialised supported built accommodation, this program is not being actively promoted or taken up in the way it is in the eastern states, effectively leaving people in WA disadvantaged compared with other Australians. What has also been reported is that other states have progressed discrete initiatives such as the Stockton specialised pricing model for accommodation. Not only are we not progressing those sorts of policies, but also we have not yet begun to start having the conversations over here. That is how far behind we are.
Unsurprisingly for Western Australia, rural and regional providers are facing particular challenges. What is being reported time and again is that many providers have no idea how they are going to approach essential services, such as transport, in regional areas. This includes practicalities such as establishing whether the recent Federal Court finding on the provision of transport will be applicable here. Added to all this is that service providers are reporting that it is becoming increasingly difficult to manage multiple funding sources in the face of the uncertainty. There are multiple funding sources for the trial sites themselves, there is the additional complicating factor of home and community care funding, and there are still many people operating under old funding arrangements. What I am particularly concerned about, and which is of great concern to people with disabilities and their families, is that at a time when we should be focused on building up the capacity of the disability sector in the face of this momentous reform and effectively responding to a huge scale-up in service provision, which is exactly what the NDIS was supposed to be delivering, the government’s lack of action in this space and the lack of certainty is resulting in a reduction of capacity. This is an unbelievable situation to be left in.
Hon Stephen Dawson: What is that based on, member?
Hon ALISON XAMON: The minister can have his say in a moment. I am going to continue to speak, thank you very much!
Hon Stephen Dawson: You are making lots of assertions that are not necessarily true. Give us some proof and some facts.
Hon ALISON XAMON: People with disability and their families are reporting back time and again. I will give the minister some examples in a moment. They are trying to access services and are finding that they are not eligible or are eligible for fewer services than they were before. I will get to that, thank you, minister!
The problem is this uncertainty.
Hon Stephen Dawson interjected.
The PRESIDENT: Minister, you will have your turn.
Hon ALISON XAMON: While the review is underway, consumer organisations are unable to spend some of their existing grant funding, which is meant to help them build the capacity of the sector. Because of the uncertainty in implementing the new system, they cannot spend the money until the announcement is made and they are unable to apply for new funding, which potentially places their organisations at risk. This should not be happening, and particularly not when we are talking about a major reform that is meant to be delivering positive services for people with disability. Furthermore, the information linkages and capacity-building component of the NDIS, which is designed to support communities and mainstream services to build capacity to include support for and involve people with disability, has stalled, with the priority areas for grant funding yet to be determined for 2017–18. As a result, we know that many people are falling through the gaps. We are hearing many stories from people with disability and their families. They include concerns about school leavers with significant disabilities being offered only three support hours a week, or that people under 65 have been told that because of the NDIS, they are no longer eligible for home and community care funding and they are finding that they are not eligible for NDIS either, so they are now being left with no support. These are the sorts of people who are falling through the cracks and are being left in limbo. There is a lack of engagement with young people in nursing homes. Anyone outside the rollout is not getting the support they need. People turning 65 who are not known to the Disability Services Commission and will be ineligible due to age by the time the rollout occurs are also falling through the gaps. To compound this issue, even if a service provider identifies a gap and develops an innovative response to filling it, they are unable to get the funding to implement it. What has been reported back to me—members in this place would understand why this particularly distresses me—is that there has been at least one suicide linked to the uncertainty around when support will be available and if eligibility criteria will be met. In short, the considerable delay is diverting valuable time, energy and resources away from supporting people with disabilities, and service providers and advocates are operating and negotiating across multiple systems in apparent isolation and with little in the way of a supportive framework and less of the sorts of supportive frameworks that are being designed in other states.
From what I can gather, from what I have been told and from what I keep hearing around the traps about the way things are reported back through the sector, it appears that the ALP McGowan government intends to move towards a federal model. However, for whatever reason, it has been unable to execute this. I am looking forward to hearing the minister’s response to see whether any light can be shed on what the problem is. I can tell members now that people want to know what is going on. I have said this to the minister myself. Why is there a delay? What is the problem? People want to hear the Minister for Disability Services, Hon Stephen Dawson, and Christian Porter stand up and say what they think the problem is. Perhaps the sector can then make a decision on what they think the problem is. There is just nothing to indicate what the issue is. Is it workforce issues? Is the commonwealth to blame? I am really keen and perfectly open to hearing that that is where the problem is. Where are the negotiations breaking down? It is absolutely in the public interest to bring this information to light. Services need it. People with disability and their families need it. I think it is fair enough, considering the investment put in by the Australian taxpayer, that the general public also get to know what the problem is. For that matter, I would like to have confirmed whether it is the intention of this government to try to move to a federal system. People just want to know. What is the issue? What is holding it up? If a decision is imminent, I can tell members now that the community needs to know that. Even if that is not going to be the case and there is to be another 18 months of uncertainty, the government should come clean about that and about the reasons for the problem. People could then start making decisions about whether they think it is worthwhile proceeding with wanting to move to a federal system, whether there is a need to pull back from trying to renegotiate those bilateral agreements, or whether there is some sort of middle ground. This uncertainty is absolutely untenable. We have to have some expected time frames for when a decision is going to be made. It is hard enough at the moment for service providers and advocacy agencies to keep pace with what is happening. If it is hard for them, I want members to think how hard it is for people with disabilities and their families to know where things are at. It is imperative that people with disability and their families are kept informed of developments in a timely way. If it were up to me, I would like some weekly updates, even if the weekly update was that there was nothing more to report. Something needs to come out and people also need to know what the changes really mean for them.
The previous government did not have a particularly great track record on that front either. As I have said before, there has been a culture within the Disability Services Commission—gosh, for as long as I can remember—of not being very good at giving out information. In my role in trying to advocate around this space in psycho-social disability, trying to get clear, timely information from the DSC was like trying to pull teeth. What really alarms me is that far too often we are finding that it is actually only through parliamentary questions, both under the previous government and this one, that we able to find out basic information that I believe should be readily available. For example, even the information about whether people in the trials would continue to be supported at current levels no matter what form of the NDIS was agreed to only came out through answers to questions. That is how it came about. We also found out information establishing when people who were outside the trial sites would be eligible for funding. Do members know why I know that? It is because I am the one who helped draft those questions to try to get them asked in this place so that I could get some answers. That is why I know that that was the only way I could get this information in my previous life. Being informed is a prerequisite. It should be a no-brainer that people with disability should be able to exercise choice and control, which is precisely what the National Disability Insurance Scheme is supposed to be about.
This motion refers to co-design. This is a very poorly understood area that I want to inform members about. Basically, the principle of co-design is recognising that the people who will be most affected by decisions—in this case, people with disability and their families and service providers—are best placed to provide expertise and knowledge about what the system should look like and what is required. Even though the rollout of the current bilateral agreement has supposedly gone ahead from 1 July, it remains spectacularly unclear what role people with disability or their families or service providers, or indeed their advocates, will have in determining how the NDIS is operationalised and implemented within Western Australia. From this day onwards—please—there is a clear need for greater genuine engagement with people with disability and, importantly, their representative organisations in the design and planning phases of the implementation. This is the only way that we are going to get the best system we can possibly get.
This has also been identified through the experiences to date of the national implementation of the NDIS. For example, the National Disability Insurance Agency has established an intellectual disability reference group. It is undergoing co-design around housing innovation through the housing innovation working group and it has the self-management policy co-design group. These sorts of frameworks have been put in place because the NDIA recognises that it needs to make sure that it is engaging with people with expertise and lived experience in order to ensure that it is improving its systems. Disability service experts have identified the need to listen more closely to the experience and expertise of people with disabilities as well as providers. Roland Naufal, who has worked in disability services for 30 years, expresses this point well in an opinion piece. He states —
We all need to acknowledge and not ignore the challenges and the Agency needs to dramatically improve its (2 way) communications and collaboration. ... too few people seem ready to constructively criticisethe scheme. We now need to be hypervigilant about making sure we don’t allow some of the current things in the pipeline to also end up being a disaster. ILC —
The information linkages and capacity-building program —
is a great example—everyone is saying that it is an issue, but it’s not until we actually see the ILC contracts and realise how inadequate the funding is and how much stuff is about to be lost that the sector will be up in arms. There needs to be more attention paid by everyone in the sector to the design of the NDIS and to call out problems when we see them, because once we allow the problems to materialise, it’s way too late.
This experience is echoed in Western Australia. In fact, the “WA Disability Services Sector Industry Plan” explicitly states —
Market failures must be addressed and future policy and legislative changes must be based on ongoing engagement and dialogue between people with disability, service providers and government. There is potential for negative unintended outcomes for people with disability, service providers and government.
We know this is the case. We know that this is what people with disability and their families are expecting and asking for and need, so we have to put in place mechanisms to address it. We have not done that; it is not happening. It is clear that any rollout of the NDIS will require more involvement in the governance and design of the system by people who are receiving the service. I suggest that so little has been done that we are really at the point at which people with disability, and services, also need to help design the governance framework by which this will occur. We know that we need greater transparency and greater inclusion of the voice of lived experience and the sector in order to ensure that this scheme meets the needs of people with disability in WA. I want to see an ongoing commitment by this government to a full partnership approach to the delivery of the NDIS. I would like to have described how it is intended that that will be achieved and how the process will be designed. It is imperative that people with disability and their representative organisations are embedded into all parts of the implementation of the disability services sector, from being represented in governance structures right through to informing the service design. That is how we will get it right.
People with lived experience are the ones who should be framing issues and developing responses to these issues; they are the people best placed to tell us what needs to happen. It is not enough to occasionally provide information and to just ask for feedback—that is not co-design; that is not transparency. Co-design is, by its very nature, iterative and involves ongoing involvement. It is not time limited. We cannot tick a box in order to co-design; that is not the way to do business. Historically and across sectors we have not done co-design well. That is because far too often when we talk about existing committees we find that the agenda is already set and there is a general focus on providing information rather than service design or policy, and that tends to be driven by service providers. That is a problem. There is poor representation of lived experience and it often relies on the views of individuals and only their personal stories rather than engagement with people who represent a wider range of views and experiences. I am always frustrated by what I think is the under-tapped resource of the role of peer workers—they are amazing. They have lived experience and often are deeply connected into the individual and systemic implications of the sector with which they are engaged. The problem is that the current WA system is not valuing consumer networks in this co-design process either.
I want to be really clear that simply holding a one-off event or even two events is not a solution to how we do this; it is not a solution to the issue. We also need to recognise that there is a need to build the capacity of people with lived experience so that they can participate in the processes and to recognise that there are communication challenges for some people with disability and to respond to that accordingly. If that is a challenge, then meet it! Frankly, if people have different needs around communication, then we have an obligation to ensure that we are doing everything within our power to ensure they are heard. People with disability and representative organisations are flagging that there are significant concerns about the NDIS rollout. That is where I am getting the “principle” concerns from, as well as from the service providers.
I will give an example. Obviously, I meet with many people, and I recently met with the WA Deaf Society. As an example of a particular part of the sector, I think the society exemplifies the need for co-design. I want to outline some of the risks that the Deaf Society alone has identified with the NDIS implementation. For example, under the WA NDIS, the WA Deaf Society is set to lose $180 000 in block funding that it currently receives for the provision of individual advocacy and interpreting services. I need to be very clear that it is impossible for these kinds of services to fit into an individual funding model. Individuals are also unable to budget for these types of services in their plans, because it is impossible to predict—which is what they would be required to do—how often they may need the services over the course of the year. Equally, for the Deaf Society to be able to continue to provide the services, it needs some certainty around its income streams so that it can retain key specialised staff, such as Auslan interpreters. Another risk the Deaf Society identified is that the services the society provides are not age dependent. We already know that people over 65 years of age are not eligible for the NDIS and instead will be transferred to a general funding pool for the over 65s that, unlike the NDIS, does not easily include provisions for language.
Without recognition of this potential failing and the provision of an adequate solution, we are in danger of denying these people a basic human right, and that is the right to language. I am pointing out that if we had true co-design, these sorts of issues would be identified early. We always knew that the transition to the NDIS was going to throw up a whole range of challenges. But considering that it is intended to be an improved level of service delivery for people with disability and their families, where we identify that we will potentially go backwards or are already going backwards, it is a clearly a failure in the design. Proper co-design would identify these issues straight up and would then mean that we could try to find the most practical and logical solutions to try to address it. It is clear, for example, that there remains a need for a degree of block funding and that the system will have to allow flexibility to respond to differing circumstances that different disabilities bring. I have given only one tiny example. The point is that the minister and the state need to know what the issues are and to have input from people with disability, to be engaged with people with disability, and to inform and advocate for people with disability. They can then better inform and advocate for people with disability at the Council of Australian Governments and on the broader policy issues raised by the NDIS, such as what we will do to provide appropriate support for people with disability in the justice system and what it means for increased accessible affordable housing. There is a whole range of areas. We are not even touching the surface of implications on the issues we need to look at.
I also want to touch on the lack of adequate funding for systemic advocacy, because I refer to it in the motion. That decision began with the previous government but has unfortunately continued under this one. I want to make a comparison with what was happened with Disability Services and the Mental Health Commission, for example. The Mental Health Commission, in my opinion, funds systemic advocacy pretty well. It has understood that we need to ensure an independent peak body is able to appropriately represent systemic issues within a sector. It has also recognised that it is important to fund the consumer voice independently. I should also acknowledge that both of these things happened under the previous government, under the previous Minister for Mental Health, but it gives a comparison. In the disability sector, all the advantages that come with funding systemic advocacy are apparently completely misunderstood, yet we know that systemic advocacy is crucial to improving disability services within WA, particularly in light of such a massive reform as the NDIS. The government needs to recognise this as a matter of urgency by providing adequate funding to allow our very good disability agencies to fill this role. Systemic advocacy is always really important, but at the moment it is fundamental. As well as representation from government and service providers, there also needs to be representation at a system level from advocates who represent the experiences and challenges that people face when they are trying to access the scheme. That is people with disability and it is also the families. At the federal level, the Productivity Commission has found that the NDIS’s success and financial sustainability is at risk because of systemic implementation issues. Advocacy agencies in WA have identified a number of systemic issues surrounding the NDIS through the representation of people with disabilities here. I will give members some examples. The inclusion of psychosocial disability at the federal level was almost a last-minute inclusion, which is a shame because it meant that the really big differences between psychosocial disability and other forms of disability, particularly around a recovery framework, were never fully explored. It has felt like we have been trying to smack a square peg into a round hole ever since. Funding for advocacy for people with psychosocial disability in non-institutional settings has always been completely lacking in WA and the NDIS has yet to make any inroads to resolving this issue. There is still not enough clarity around eligibility criteria. There is a genuine problem—this is at a federal level as well—that people assisting with the planning process need to have a sound understanding of the nature of psychosocial disability but too often they just do not. In addition, development plans must be able to accommodate the episodic nature of mental health conditions. That has probably been the principal challenge from day dot. What do we do when people get well and then they get unwell again? How on earth do we do that? People with psychosocial disability often require cyclical assistance. Ongoing systems need to in place to engage and support people over the long term, otherwise they may never be connected to the assistance that they need. If people think they are saving money, they are not; they are just ending up in our emergency departments.
We know that the introduction of the NDIS does not mean that other community programs should be discontinued. There is also a lot of confusion about the interface between the NDIS and other disability and mainstream services. Because of this, some services are not being provided because it is assumed that they are another organisation’s responsibility. As I highlighted earlier, some people are now receiving no service because it has been assumed that the NDIS will cover them, but only after their existing funding stopped have they come to realise that they are not eligible for the NDIS after all. That is not the way it was ever intended to operate. We need more clarity around the roles and responsibilities and to ensure that support is only withdrawn once continuity of service for people with disability is assured.
We will need to see some pretty strong leadership in this area as soon as possible because effective implementation of change of this scale is completely reliant upon ensuring that we have strong leadership. I want to be really clear that when I am talking about leadership, I am not talking about top-down decision-making. We had that for years under the Disability Services Commission. I am talking about leadership that incorporates the experience, expertise and the knowledge of people with disability and their families, making sure that we are incorporating the expertise of the community sector, service providers as well as the government. We need to ensure that we have leadership that implements systems so that people are kept informed about what is happening. People do not know what is going on. We could then have systems that can act appropriately and swiftly on constructive feedback. We need to have leadership that is ever mindful of the impacts that actions or the lack of action has on the very people who the scheme is designed to assist. We need to see a final announcement from this government soon, and in the absence of that final announcement being given, we need to be given a time frame about when that will happen, and we also need to know what the problems are. What are the blockages? What is this government working towards? Is it working towards, as the rumours keep circulating, a federal system, in which case can the government please just say what is happening and who the problem is? If it wants to point the finger at the federal government, it can knock its socks off, but people just want to know what is going on. I hope that in his reply the minister will be able to provide some of that clarity and will be able to say what the problem is. Frankly, I do not really care where the problem is; I just want to know what is going on and I just want to know what is being done to resolve it. More importantly, people with disability and their families want to know what is going on so that they can also make informed decisions about where they might want to apportion some blame. We know that considerable time, energy and money is being wasted because of this uncertainty. It really needs to be much better directed at solving implementation challenges. I am also calling on this government to put in place mechanisms to ensure that people with disability and their representative organisations are included in the governance structures and inform service delivery design. Further, I am calling on the government to make fully transparent its decision-making processes so that people can have confidence in how these decisions are coming about.
I have to say that no doubt people were upset about the way the bilateral agreement was signed during the election campaign. But there is also no doubt that people have run out of patience with this government with the uncertainty that continues with the future of the National Disability Insurance Scheme. We need to see some significant announcements and improvements in implementing the scheme. The genuine risk is that we are going to end up leaving Western Australians whose lives are affected by disability significantly disadvantaged compared with people with disability in the rest of the country. That is not why people fought so hard for this reform. That is not what people want and it is not okay. It is not where we are meant to land.
I need to acknowledge that for some people, the reforms are working. But for too many they are not. We need to make sure that they are working for everybody, and they are not. I look forward to, hopefully, getting some sort of announcement from the minister about this. If the minister would like to hear more personal stories about what is happening for people who are being left behind, I am quite sure that I can point the minister in the right direction for people to speak to and hear from because they are far and wide. Hopefully, we are going to see something soon because this is too important a reform to squander.
[speeches and comments of various members]
Debate adjourned, pursuant to temporary orders.