GAEBLER, Ms Shauna, Chief Executive Officer, Consumers of Mental Health Western Australia

[14:57]

CHAIR: Welcome. Sorry we're running a bit late. Would you like to make some opening comments?

Ms Gaebler : Consumers of Mental Health WA, or COMHWA, is the peak body for people with mental health issues throughout the state. Our organisation is led by consumers and for consumers. We've been involved in the NDIS since its inception, with the pilot of WA NDIS, and we’ve been engaged with people with psychosocial disabilities for over five years. During that time we've gained a lot of feedback through a variety of means. We've had specific feedback from well over 150 people. I guess one of the differences with people who have psychosocial disabilities is that in the main they've not had prior contact with disability services, so they come to NDIS entering into a completely different system with different languages, with no pre-existing relationships.

We've received a lot of feedback from people that provides a really good insight into some of the barriers that are faced and that have a direct relationship to the independent assessments. People report uncertainty about what NDIS is. They find it really complex and hard to understand. They have limited understanding of whether and how to apply. They fear that entering NDIS will force them to lose control to the government and fear not being able to make their own decisions. They worry that the insurance component of NDIS will mean that they have to pay in a similar way that they do with health insurance. Interestingly, they feel that they aren't disabled enough to join NDIS. They have concerns around their personal information being provided to the government and what will happen to it and who will have access. They also have difficulties in retaining and comprehending information, particularly when there are waiting times for decisions. Some people have been really enthusiastic about going into NDIS, but when there's been time lapse in actions, which there often is, they can become confused or hesitant and no longer confident of the value of NDIS, and they choose then to disengage.

People with psychosocial disabilities—again, at variance sometimes with other disabilities—can be more socially isolated and disconnected from their family and supports. There are also difficulties, people feel, with the current system on finding a clinician who understands the requirements of NDIS and is willing to sign off on the requirement of permanency, particularly in light of the episodic nature of psychosocial disabilities. Individuals report to us that NDIS staff don't 'get' mental health. People can sense when someone doesn't have the knowledge, understanding or aptitude to support their recovery and wellbeing.

We certainly have people who feel triggered when interactions are not trauma informed or are stigmatising, and it can result in people withdrawing from conversations and relationships. People are concerned when they are being judged. For many people, entering into what exists now with assessments is confronting and concerning. Taking the concerns I've mentioned into account, people are fearful of failure, and we are concerned about the harm that may be caused to their mental health and wellbeing. It's about putting ourselves in the position of people who have psychosocial disability and what is being proposed and moved forward with.

People are being mandated by the government to have a visit from or speak to a stranger who may not have any understanding of mental health, who doesn't know us, who may make us feel culturally unsafe. It may be on a day when we feel well and when they may feel that we're not disabled enough. It may be a day when we wake up and do feel unwell and are unable to get out of bed and speak to anyone. We may have to travel to a place where we are uncomfortable, to be tested over some hours when we struggle to concentrate sometimes for minutes, to be judged by someone who knows nothing about us, and have to leave the room so the assessor can speak with our family or support person without us knowing what's being said and how we're being judged. We might not know what to say. We face the prospect of attending the trial alone, to have to say intimate things to someone we've never met before and be unsure of to whom and where our personal information is going and how it will be used, and to fail and have no recourse.

What is the alternative? We've received lots of feedback from people with psychosocial disabilities over the years, and it has continued, about the difficulties they face with the current system in gaining access to NDIS. The barriers relate to people needing a lot of energy and comprehension to coordinate the complex application process, often by themselves, and feeling as though NDIS staff don't get mental health, and the costs and barriers they face in gaining evidence on permanent functional disability. In the past, some NGOs have provided support for people to access NDIS. This has dwindled and many people have to do it alone. This can be particularly difficult, in feedback we've received, for people from Aboriginal and CALD backgrounds and for people who rely on bulk-billing support to gather their evidence.

In consideration of these concerns, CoMHWA calls for NDIA to halt the implementation of independent assessments, to review the complaints and recommendations and to conduct a co-design process directly involving people with psychosocial disabilities, including those people who are hardly ever reached. There are workable options that can help support their mental health and wellbeing while enabling people to have access to life-changing support through NDIS.

CoMHWA has been engaged in a pilot hostel recovery support project, in which NGOs have been funded, to support people with psychosocial disabilities to apply for entry into NDIS. The project has had a high success rate for people with psychosocial disabilities, who tend to be in the groups that are hardly ever reached, living in psychiatric hostels. We also recommend the option of funded assessments by health professionals that are the choice of the prospective participants who request that access. This is an option, perhaps along with the independent assessment option.

One of the considerations that we have actually been involved with that has been successful has been the provision of supported decision-making. This is designed to support people whose decision-making may be impaired or be seen to be impaired to make their own decisions. That can be the case for people with psychosocial disabilities. Supported decision-making aligns with the objects of the NDIS Act to enable people with disability to exercise choice and control in the pursuit of their goals. We have been engaged in several programs in WA providing independent peer based decision-making support for people with psychosocial disabilities to assist them to make informed decisions about entering NDIS and support them to select their service providers.

In relation to accessing information on individual assessors, I've had a look at trying to glean any information from the perspective of a consumer and have found it virtually impossible. I can't find out whether people know about mental health or what skills they bring. Looking at the equity of access and reducing harm by ensuring that all of the independent assessment process is universally culturally appropriate for people from Aboriginal and CALD communities throughout Australia, CoMHWA has been notified by participants in the current assessment processes that it really depends on who the NDIS local area coordinator is as to how culturally appropriate their assessment is.

CoMHWA also uphold the rights of individuals in accordance with the national mental health service standards for people with psychosocial disability, and that is the right to involve or not involve carers and/or others. This is a right that can be infringed by one of the assessments—LSP-39 as an example—where it's completed by the assessor with or without carers, and that's where the person can be asked to leave the room and conversations can be had around their appearance, compliance and social interactions without the person being able to be aware or have any input into those conversations.

CoMHWA supports access for people to gain life-changing benefits from NDIS, and we call for processes that support the right of people with psychosocial disabilities to have equal access and, importantly, for their mental health and for their wellbeing to be supported in what's a critically important and stressful process in testing their eligibility and their right to access NDIS.

CHAIR: Thanks, Ms Gaebler. I will go to Mr Wallace.

Mr WALLACE: Thanks, Chair. Thank you, Ms Gaebler. Can I take you to the first issue, conflict of interest. It's been said by a number of people that there is potential for various types of conflict of interest in the independent assessment. I just want to take you to the way that the system is proposed to happen insofar as there are eight organisations which were appointed by the government to undertake these independent assessments, and that was in February of this year. I understand those eight organisations tendered for the project. I am wondering whether you have a view on whether, in that process, an organisation that competitively tenders for the independent assessments is put in a conflict of interest situation by virtue of the fact that there may be an economic imperative to mark the participant down, if I can put it that way, as far as their disability goes?

Do you think that that is a risk, is not a risk or is not a problem, given the ethical obligations that they would be under?

Ms Gaebler : I looked at it when I was working on reviewing the independent assessments. It's the first time I had actually looked for the organisations that were involved. I was really surprised with who the organisations were.

Mr WALLACE: Why is that?

Ms Gaebler : I didn't know any of them. In other words, they certainly don't have a profile in mental health. But even from my previous existence across a variety of areas I still didn't know them. When I looked at them, just in general, they appeared very corporate, they appeared very large and, for some of them, I really couldn't work out in what way their expertise related to independent assessments. It was certainly difficult to work out who had mental health skills. There was one group who I thought should have them because they were psychologists.

Mr WALLACE: Outlook Matters Psychology?

Ms Gaebler : Yes, I think so. But I couldn't assess the others. Some of them just seemed, from my perspective, a bit bizarre. They were directly employment agencies. I looked at some of them and thought, 'I would be concerned how much they could actually evaluate my suitability and eligibility.' Not all of them are available in all areas. Looking at them, I don't know how much they are locally based and how much they would be nationally, distance based. That wasn't obvious. Again, it's useful looking at it from an external position, because I don't know where their instruction would come from. I don't know what their priorities would be. It may be that they do have a priority about constraints as to the numbers of people who come in, for example. They may have a lack of knowledge or preconceptions about people with mental health issues; I don't know. Probably my biggest concern is that I would go in having not only no idea of who it would be but no idea of the organisations that I was having to enter.

Mr WALLACE: I may not have put my concern to you very clearly. What I am asking you is: with the way that it's set up, is there almost a possibility, a likelihood or even an ability for a subconscious bias—I know I'm not using the right phrase—to mark the client down, as far as their disability goes, because, if they mark the client down, then they've got more chance, one might think, of being chosen on the next panel in three years time or whenever that panel might be renewed? If I was an organisation and I gave everybody that came before me full tote odds on what they wanted or I was very generous, you could argue that that might work against me the next time my application to be a panel member came around.

Ms Gaebler : For the individual, you are meaning, when you say 'panel member'?

CHAIR: No, for the organisation, because they have to tender to be on that panel.

Ms Gaebler : Just to show the complexity, will the organisations that currently have independent assessors assess individuals and then sit on panels, or am I—

Mr WALLACE: No. My understanding is that those eight organisations have had to tender to be on that panel. There are only eight. They would then go and employ or subcontract other independent assessors, who would work for them. But my concern is this: is there even just an ability in the system to create a subconscious bias to mark people down in relation to their disability?

Ms Gaebler : My concern is more related to the episodic nature of mental health issues. Regardless of who it is, if people don't have an understanding and don't have mechanisms to be able to overcome bias or lack of knowledge, people will have variable responses from various people as to whether they're eligible or not.

Mr WALLACE: Let me finish off by taking you to an earlier point that you made—that is, that you would like to see participants being able to be assessed by their chosen health professional. Is that correct?

Ms Gaebler : Yes.

Mr WALLACE: Do you think that that could create a bias in itself where you have a health professional that may have a longstanding relationship with a participant that may not be as objective as it should be?

Ms Gaebler : The issue with the longstanding clinician, if that's the way the person wants to go, is that they'll have a knowledge of the episodic nature. They will have seen people when they're unwell as well as when they're functioning better. That's what professionals who have the relationship will bring. They'll also have more trust, and they'll be more open to having a conversation. If people are going to someone that they don't know and have been feeling well, they will find it very hard to speak about the last month, and they don't realise the triggers that will get them in or out of being eligible or not. So I think there's always a risk with whomever sees them from unconscious or conscious bias. I think there are biases from going to independent assessors and there are biases, potentially, from going to your own physician. From my perspective, I'd rather go to my own physician who understands and has longer term knowledge, because NDIS is about the long game. It's not about the last couple of months; it's around the extended period that support is needed.

Mr WALLACE: Thank you very much, Ms Gaebler. Thanks, Chair.

Senator STEELE-JOHN: Ms Gaebler, building on the point that Mr Wallace was talking to you about, I've got a similar thought in my head. I'd add that we know now that, although this change in the scheme was initially presented as a way to enable participants to overcome the cost related to obtaining certain types of assessments, the genesis of this idea is actually one of a desire to restrain the perceived cost increases of the agency. I think yesterday or the day before we finally had the figure that the government believes it will save via the implementation of independent assessments—somewhere in the region of $700 million or so. From a consumer protection perspective, the organisations that tendered for the contract to supply independent assessors received the tenders only a couple of days after the advertisement for those tenders came up. My concern is that, should full-profit businesses, which have tendered for those contracts in the context of the government pursuing this change to reduce cost, fail to deliver reduced cost via reduced plan size, it is potentially the case that they will feel that they will lose that tender because that is the context in which they have won the tender in first place. I think that is potentially the source of the bias that Mr Wallace is referencing. Could that be a perverse incentive to give someone a lower score than they would otherwise be given as a result of an assessment in order to be seen to be delivering on the reasons why this reform was implemented in the first place? With that additional context, do you as a consumer organisation have a concern for what that could mean for a consumer participating in a process with those potential drivers at play?

Ms Gaebler : Yes. That is something that consumers are aware of. Yes, it is a concern.

Senator STEELE-JOHN: You made an observation earlier about the potential need for the government to address the sometimes financially prohibitive nature of attaining certain types of assessment, because you can get a generalised medical letter from a treating GP, but if you want anything more specific than that you have to go to a medical specialist and that can be, as we know, costly. You were suggesting earlier that there would be an opportunity there for the government to meet that cost, understanding that a high-quality report will deliver you a high-quality piece of evidence to support a good quality plan that achieves the long-term goal of supporting the individual to do X, Y and Z, including being economically productive. Is that what you were getting at with that suggestion?

Ms Gaebler : Yes. Certainly plans are an issue and that is a way of being able to deliver the best of both worlds.

Senator STEELE-JOHN: Because a high-quality set of evidence to support the contention that a support is reasonable and necessary will deliver an effective plan, from a consumer perspective.

Ms Gaebler : Yes.

Senator STEELE-JOHN: Concerns have been raised with us as to the potential impact of these types of assessments delivered by unqualified individuals who are strangers to participants. Do you feel as though that has the ability to do harm to participants?

Ms Gaebler : Yes, very much so.

Senator STEELE-JOHN: What types of harm are we talking about, from a mental health perspective?

Ms Gaebler : We certainly get feedback from people where they feel distressed, where it increases their anxiety. We hear of people who will shut themselves down, who will fully isolate themselves and become distressed. Yes, it can be a profound distress and, if people are distressed enough, it may well cause self-harm or hospitalisation.

Senator STEELE-JOHN: So there is a potential risk here of self-harm and hospitalisation?

Ms Gaebler : Yes.

Senator STEELE-JOHN: So, on that basis that, would it actually be the most appropriate course of action to actually halt the trial that is currently under way?

Ms Gaebler : Yes, in light of the mental health and wellbeing of people.

Senator STEELE-JOHN: We had some evidence in the last hearing that what the trial is testing for and what evidence is needed to assess whether these things are effective are actually two different questions. So what is being assessed is the customer satisfaction of participants in certain parts of the process. Whereas we were told what would need to actually be measured is: what is the quality of the plan resultant from an independent assessment versus the quality of the plan resultant not from an independent assessment? Would you, from a consumer perspective, agree that the data that you would actually need to decide whether or not to proceed is the quality of the plan, rather than the abstract consumer feedback that we seem to be getting?

Ms Gaebler : Yes, I think getting the feedback can be biased with what you get back as a start off.

Senator STEELE-JOHN: Or if you haven't received anything back yet?

Ms Gaebler : Yes, that is right. I think part of the concern is around people who don't get in and that is where NDIS does skip looking at outcomes. As we are saying, the harm that that can bring, people who aren't eligible aren't necessarily reported as far as their outcomes. Certainly the plan, yes, that is also of significance, where people have a lot of feedback about the plans that they will subsequently get. Comments can be that the first plan they get is great and then the follow-up plan is very different and not as useful. So it is something that is important to be evaluating.

CHAIR: Ms Gaebler, thank you very much for your submission and for discussing it with us today. We appreciate it. Thank you very much.

Ms Gaebler : Thank you for the opportunity.