STEVENSON, Mr Anthony (Tony), Chief Executive Officer, Mental Illness Fellowship Australia

[11:44]

CHAIR: Mr Stevenson, thank you for appearing before the committee. We have the submission from the fellowship, and I invite you to make some opening comments.

Mr Stevenson : Good morning, Mr Andrews and Senator Brown. I thank the joint standing committee for the opportunity to contribute today to the committee's inquiry into independent assessments. I begin by acknowledging the Yuggeraand Turrbal people, the traditional custodians of the land on which we meet today, and I pay my respects to their elders past and present.

MIFA is a federation of seven longstanding organisations across Australia. Each year we support 20,000 people who are living with severe mental health conditions and additional complexities in their lives, and their families, friends and carers. There are around 300,000 people in Australia with the most severe mental health conditions and complexities. Those complexities include the highest rate of death by suicide in Australia, a 19-year gap in life expectancy, a lifetime of poverty and social exclusion, very poor physical health conditions, and a high risk of long periods of hospitalisation, homelessness and prison.

The NDIS, when fully operational, is expected to cater for 64,000 within this group. Currently it's at about 50,000. Other Commonwealth, state and territory programs cater for another 75,000 people. This leaves a gap, with 150,000 people with no support. Commonwealth programs, such as the Personal Helpers and Mentors program and the Partners in Recovery program, were shut down to fund the NDIS, directly leading to this gap. I include that statement in my preamble because it has an impact on independent assessments. If people with a psychosocial disability are not successful in accessing the NDIS then there's very little else for most of them. That gap creates a critical step in being either successful or unsuccessful in receiving NDIS support. The Assistant Minister to the Prime Minister for Mental Health and Suicide Prevention, David Coleman, and his state and territory counterparts are developing a new national mental health and suicide prevention agreement to deal with this gap, and this must be resolved immediately.

In my evidence on independent assessments today I will focus on: engaging with lived experience in the design of the independent assessments, the need for flexibility, the panel and issues we've identified there, and issues around quality assurance and transparency. The NDIA's proposed model for independent assessments has raised considerable concern for people with lived experience of mental illness. At the heart of this concern is the lack of consultation and co-design for the introduction of this particular reform. 'Nothing about us without us' is a foundational principle of the lived-experience movement, and this has been lacking in discussions and policy planning for independent assessments to date.

Promoting the engagement and inclusion of consumers and carers within system reform is critical to successful service design and delivery. Consumers and carers want services that allow them to have a say in how their services are provided. The Tune review of 2019 recommended that extensive consultation with participants, the disability sector, service providers and the NDI workforce should be undertaken if the NDIA wanted to introduce independent assessment reform. Engagement with people with lived experience of psychosocial disability, and their family members, carers and supporters, will be critical to any new reform within the NDIS, such as independent assessments. New structures and funding to support lived-experience engagement are needed so that the NDIA can co-design services with people with psychosocial disability and their family members and carers.

The second point is the need for flexibility. The ability to be flexible and tailor approaches to meet individual needs is critical. The collection of valid information on a person's functional capacity across all areas of their life may be challenging for people with psychosocial disability. They may experience a loss of functional capacity across a range of different life domains and be at increased risk of homelessness, financial hardship, health concerns and social isolation. It's a very complex process of getting a comprehensive picture of a person with psychosocial disability and their lack of functional capacity in certain areas.

Independent assessors will most likely be strangers. Whereas people with psychosocial disability may well have known and trusted clinicians, allied professionals and others, when they come to do their independent assessment it will be a stranger and there will be little time to develop trust and rapport after initial introductions are made. We are concerned with the ability of independent assessors to accurately assess the functional capacity of a person with psychosocial disability, including their needs and the complexity of their circumstances, in an assessment that may only last up to four hours in length. Safeguards must be built into the process to support a strength based and recovery oriented assessment of individual circumstances. The process must support flexibility while achieving consistency, equity and fairness in decision-making. We acknowledge that it is important for the NDIA do have an equitable process to assess everyone's entitlement and eligibility for the NDIS, but it needs to have that individual strength based and recovery oriented process of assessing those whole-of-life experiences of each person.

Any new development, like independent assessments, must be overlaid within the NDIS psychosocial disability recovery framework. The NDIA is developing a recovery framework. As you are aware, the mental health sector has been very successful in its recovery approach to meeting a person's needs. The NDIA has now acknowledged that a recovery approach is the best way to achieve the objectives of the NDIS—that is, to address hope and optimism, which must come before any sort of support; to develop the person's individual strength and resilience; to develop the relationship with family and friends; and to provide access into community support. The NDIA is developing a recovery framework. That framework must be the reference point for any new initiatives, like independent assessments. Does the initiative enhance recovery or does it inhibit recovery? These two things must go hand-in-hand.

In relation to the independent assessments panel, the Tune review recommended that the NDIA should not implement a closed or deliberately limited panel of providers to undertake functional capacity assessments. The opposite approach was taken with the appointment of the independent assessors panel. MIFA has concerns about the make-up of the proposed panel members. We are concerned that the limited number of organisations appointed may result in limited choice and control for individuals with psychosocial disability across Australia. We are concerned that the organisations may not have the systems and processes to support their healthcare professionals in areas like quality, flexibility and local responsiveness. I guess the analogy there is that we are concerned that it's a cookie-cutter type of approach given the limited number of panel providers. We are concerned that the professionals in those organisations may not have the breadth of psychosocial disability specific knowledge, skills or expertise needed to promote the best outcomes—in other words, to be doing a recovery oriented assessment, which is a very positive, forward looking type of assessment, as opposed to a deficit type of assessment, a functional disability type of assessment. Once the NDIA endorses a recovery framework it is implicit that the NDIA will be recovery oriented, which is different from being functional deficit focused.

In terms of quality assurance and transparency, data must be collected to compare independent assessment outcomes for people with psychosocial disability with independent assessment outcomes for people with other disability types. As the NDIA itself was developed probably more in line with physical and cognitive disability, right throughout the history of the NDIS there have been concerns that the needs of people with psychosocial disability haven't been adequately catered for. Having highly transparent data enables us to look at what is happening with independent assessments in relation to people with a psychosocial disability compared to people in other disability cohorts. So it is important that that de-identifiable data is made publicly available so that we can monitor that aspect and that there is sufficient transparency to enable people to lodge reasonable concerns in relation to how their assessment has been conducted. Thank you very much.

CHAIR: Thank you, Mr Stevenson. Your first recommendation is that independent assessors working with participants with psychosocial disability should have specific training skills et cetera in relation to those matters. It seems to me that the way in which the independent assessment proposal is being put is that somebody with a minimum of one years experience in some allied health professional position will be able to administer one of a number of tools—a Vineland, a WHODAS or whatever. That suggests that the approach being adopted is that the far-from-generic skills of being able to administer a tool are irrelevant. I would like your comment on that. If that is the rationale for it, do you think it is adequate?

Mr Stevenson : No, I don't think it is adequate. The tool is one thing—if you are a trained health professional or allied health professional, yes you do have a level of competency and understanding about tools—but it is about the environment where many of those professionals will be using those tools. Let's say it is cut and dried situations. The organisations on the panel, and the people they employ, would routinely be conducting, let's say, employee assistance programs and perhaps assistance for WorkCover. So there are a whole range of tick and flick, very desktop based assessment tools for a particular outcome—and, of course, they are qualified to go through that process at that superficial level. But what we are talking about here is an assessment that will lead to an understanding of that person's capacity to contribute to the community and reduce their dependence on government support—because they are ultimately the objectives of the NDIS. So there needs to be an understanding of what leads a person with psychosocial disability to be in that situation. It's not just what's presented face-to-face in a four-hour interview; there's a whole history and lifetime. Generally, because of the nature of people's experience with a severe mental illness, it's not easily diagnosable. It can be put down to a person going off the rails, getting in with the wrong crowd, perhaps taking drugs—whatever. Until that person becomes distanced from their family, stops their education, drops out of work, perhaps becomes homeless or is in and out of hospital—it can take years for that diagnosis. By the time people are applying for the NDIS, they may have had a whole lifetime's history of all those situations. It's the ability to understand, walking into the room for an assessment: 'Here is a person who is likely to have had that set of life experiences. That's what I need to be focused on as an assessor. I need to be understanding that', and then to understand what the impact is of all that—the social isolation, the poverty, the living rough, the lack of those practical skills in order to maintain your accommodation, your daily living et cetera.

That, we believe, is a particular set of skills and experiences the assessors will need to have. They will also need to know who else they need to talk to and connect with to find out all that information, because it's not always something the person will volunteer. They may not fully comprehend the importance of explaining all of that, they may not have the patience and they may feel quite fearful in that interview process as well.

CHAIR: So, as part of that assessment, should the assessor have access to all the other reports that have been written about the—

Mr Stevenson : Yes, that's part of it. Many of these people don't necessarily have those reports either, because their support may have come through a homelessness service. They may have been in and out of homelessness, in and out of prison, in and out of hospital; there may be some hospital reports. But it's not as if they've had a continuity and a consistency of reports. So, in any opportunity connecting with a person with a severe psychosocial disability, there's a process of uncovering a lot of that information, and it may be the first time it's been thoroughly uncovered in that way.

CHAIR: Thank you.

Senator CAROL BROWN: Thank you for your evidence today. Your recommendation is that the NDIA undertake more consultation and a co-design process. Is that still your position, given that there has been more information put out by the NDIA and the minister?

Mr Stevenson : It is definitely still our situation. It's still our view. I participate in a stakeholder group that is run by the Department of Social Services and the NDIA. Whenever this issue is raised, there's widespread concern across the board and, also, concern about the lack of consultation coming from people with lived experience, their families and their supporters. So it's the general view across our sector that there needs to be more consultation and co-design.

Senator CAROL BROWN: Are you involved in the mental health reform group—the stakeholder reference group?

Mr Stevenson : Yes, I am.

Senator CAROL BROWN: Have the independent assessors involved in the trial of the pilots participated in any forums with the NDIA?

Mr Stevenson : I'm not aware of that, Senator Brown.

Senator CAROL BROWN: So they've not been through the mental health reform group?

Mr Stevenson : No, we certainly haven't had access to any of the assessors.

Senator CAROL BROWN: Okay. Do you know whether the independent assessors have had any training or have participated in any sort of forum around psychosocial disability?

Mr Stevenson : No, we're not aware of whether that has been the case. We haven't seen any indication that this issue has been taken on board, and we're not aware of any structures or practices that have been put in place to ensure that the panels do have this knowledge or experience.

Senator CAROL BROWN: Your organisation of course has been following this independent assessment proposal and the personalised budget component of it. Are there any aspects of what is currently being proposed in the independent assessment model that you consider positive?

Mr Stevenson : Yes. It is important to have equity. It obviously will benefit many people as well to have the opportunity for their particular needs to be considered equitably. For people who don't have access to allied health professionals, then, of course, this is a free opportunity that they can take for that purpose. So that's a positive aspect. We are concerned, though, about even getting to the starting point—having that level of equity so that they are able to put forward their particular situation and so that it's done equitably across Australia with all other people. We do need to ensure that the process from there actually does give that person the opportunity then to put forward all of their history and experiences that are necessary in making that assessment.

Senator CAROL BROWN: How do we ensure that under the current model suggested?

Mr Stevenson : Firstly, the process of co-design will enable consumers and carers—and of course we do rely on people who represent that group broadly—to be involved in the co-design process. So we're looking to ensure that there are sufficient assessors and access to assessors who really have that deeper knowledge and experience with psychosocial disability and that they are in a position to do whatever they need to do to be satisfied that they have adequately understood that person's situation so that they can make a full and comprehensive assessment of their particular needs.

Senator CAROL BROWN: Where do you think we should go now? What would you like to see the committee recommend? Should we go back to the drawing board and embark on a legitimate co-design with the sector and participants?

Mr Stevenson : Yes. While we do understand the broader experiences of people with serious mental illness, I think the question is: how far up the chain do you go to look at these issues holistically? Or do you accept that there are certain boundaries and there will be independent assessments, so let's focus on how they will work?

At different points, we will be advocating to government on a whole range of needs and services that are missing for people with a psychosocial disability. That could extend, in fact, to whether or not the NDIS is still the best place to provide that support for people with a psychosocial disability. But let's say that independent assessments will proceed. In that case, I think it is important, then, to have a genuine process of co-design to take into account all of those needs and considerations around independent assessments, to adequately trial that approach and to have transparency of that data so that there can be a systemic review of that process.

Ultimately, we want people to have a successful experience of the NDIS and we want the NDIS to be recovery oriented. In other words, it must be forward looking. It must be focusing on the person's strengths; on their capacity to achieve their goals in their life and to contribute and participate; and, ultimately, on reducing the level of financial support. What's the best assessment process that will get us to that point as opposed to an assessment process that will perhaps have the stated or unstated goal of being a gatekeeper, of keeping people out of the NDIS? That's really where we would be approaching it—that we are able to have that conversation, reach agreement about what we are trying to achieve through independent assessments and then work through what an appropriate model of doing that is.

Senator CAROL BROWN: Okay. Thank you, Chair.

CHAIR: Mr Stevenson, Senator Brown has finished, and you have answered my questions. Thank you very much for your ongoing interest in these inquiries and the NDIS and for your valuable contributions.