Gateways and Gatekeepers: An exploration of the issues facing people with episodic mental illness during transition to the NDIS

This session was part of the Advocacy Sector Conversations Forum series held on Zoom on 9 June 2021.


Overview

Indications suggest that improvements to the National Disability Insurance Scheme (NDIS) policy design and implementation are required, to better support the specific needs of people with psychosocial disability, especially given the fluctuating nature of mental health. Furthermore, as resources are diverted away from Victorian community mental health services towards the NDIS, those deemed ineligible face an uncertain future.

Dr Liz Hudson presents the findings from her PhD research, which involved exploring the experiences of people with psychosocial disability during transition to the NDIS. She discovered that system-level structural barriers and rationing decisions applied by NDIS staff lead to differential pathways for people experiencing mental illness.

 

 

Session resources

Links and downloads for resources mentioned in this session can be found at the bottom of this post.

Listen to audio

 

Transcript

Melissa Hale:
Good morning, everyone.  Welcome to the last session of the June 2021 Advocacy Sector Conversation series.  My name is Melissa Hale and I’m the coordinator the Disability Advocacy Resource Unit.  I would like to begin by acknowledging the Wurundjeri People of the Kulin nation, the traditional custodians of the land in which I am coming from you, coming to you from today and pay my respects to their elders past, present and emerging.  I extend that respect to Aboriginal and Torres Strait Islander people here today.  And I also acknowledge that sovereignty were never ceded, and that it always was and always will be Aboriginal land.

Once again, we are delivering the Advocacy Sector Conversation Forum to you online.  We hope at some stage to be able to deliver this series face to face when it’s safe to do so in an inclusive and accessible way.  However, hopefully you’ve all settled in comfortably and are ready for a fantastic series this week.  We encourage your active participation today.  So, please type your questions in the Q & A box.  And at the end of the session, I will be facilitating a Q & A session with our presenter.

The last session of our series is Gateways and Gatekeepers: An exploration of the issue facing people with episodic mental illness during the transition to the NDIS.  Dr. Liz Hudson will present the finding from her PhD research which involves exploring experiences of people with psychosocial disability during the transition to the NDIS.  She discovered that system level structural barriers, and racial indecision applied by NDIS staff do indeed lead to diff- differential pathways for people experiencing mental illness.  Please welcome Liz Hudson.

Liz Hudson:
Thank you, Melissa, and welcome everybody.  The, the, the, title of my research, uh, Gateways and Gatekeepers: An exploration of the issues facing people with episodic mental illness, uh, during transition to the National Disability Insurance Scheme, the NDIS, in, in many ways, uh, depicts or symbolises pathways.  And, uh, there are pathways on many levels.

So, there was the transition from, uh, you know, traditional block funding to disability services for people with disability into individualised funding under the National Disability Insurance Scheme.  So, that’s a pathway of transition for service providers, but also for service users.  And there were, uh, in my research, I discovered pathways, there are pathways, default pathways for people with psychosocial disability.  Some had the pathway of acceptance, acceptance into the NDIS.  Some had alternate pathways, where they were rejected by the NDIS.

And that led to, I guess, pathways to recovery, either opportunities or risks associated depending on whether the pathway to acceptance or rejection, rejection was achieved.  This is also my research is about my own pathway.  And, uh, and my, I guess, I would like to begin by just telling you a little bit about the bac- my background and my interest in this research.  I um, came to be interested in doing a Doctor of Studies based on my professional experience as both a research manager and CEO of a, um, mental health organisation, community based mental health organisation.

The latter role was, uh, as a research manager for a large disability organisation that also provided support, employment support to people with mental illness.  I was anticipating doing a, uh, doctorate because I wanted to, I guess, to legitimise my role as a research manager in an organisation.  I hadn’t actually studied research before.  And so, I was delighted to find a pathway into a PhD through the partnership between VCOSS and RMIT.  So, the slide on the front, the first slide of front, there are three logos on this page that I guess symbolise my pathway to being able to, uh, access support financial support, to do my PhD.

And that was through a partnership between VCOSS, Victorian Council of Social Service, and RMIT University.  And they formed a partnership called the Future Social Service Institute, which was funded by the state government but also a contribution by, um, other organisations as well.  The two partner organisations as well.  So, I was thrilled to be able to, um, to take up the opportunity to do a scholarship that was funded by this, this partnership, and I am very grateful for, um, that to, uh, occur.  And it’s, um, helped me have a reason for being here today.

Whilst the NDIS presents opportunities, uh, for many eligible people experiencing psychosocial disability, a range of existing services have been or will be replaced by the NDIS creating a problem for those who are ineligible.  There are 60- 690,000 people, Australians living with severe mental illness.  64,000 of them will be NDIS eligible at any time, point in time.

Therefore, up to 91% of eligible NDIS participant- ineligible for NDIS; they rely on non-NDIS mental health supports, which might be mainstream supports or existing services.  At the national level, three major mental health service programmes, Sams Disability, Disability Living and PIR will actually close as a result of the NDIS and many have already.  Of particular note is the unique situation in Victoria, when we’re under the bilateral agreements, all state community mental health services, were, um, will be replaced by the NDIS.

I guess, justifying the focus of my research on, um, researching people’s experience of the NDIS not just those who are eligible and had access to the NDIS, but what was the result that those who were ineligible, what did that mean for them?  What kind of future did they have?  At the time of my research, all, um, existing community mental health services were being in Victoria were being replaced by the NDIS.

But since my research, there has been a small amount of funding to try and support those that, um, for whom there are service gaps, which I’m really pleased to see, because that wasn’t the experience during the period of my research.  However, it’s still inadequate, it still doesn’t, I guess, support those, um, remaining 91% who will be ineligible for the NDIS.

So, serendipitously, I think the NDIS commenced the first year of my PhD in 2016.  And full rollout happened to actually coincide with the end of my PhD in 2020.  I’d like to say that this is the result of well-planned design, but the truth – it is the product merely of coincidence.  Uh, during 2018 and 2019, as you can see on this slide is the period of time when I commenced my data collection.  That’s where I interviewed people with, uh, psychosocial disability, uh, about their experiences on transitioning from, uh, traditional services to individualised funding under the NDIS.

So, my research, the timeline actually mirrored the, uh, timeline of the full rollout of the NDIS.  And, uh, I was interested in interviewing both eligible and ineligible NDIS participants as they, because my re- research was positioned to, I guess, shine a spotlight on the impacts of ineligibility at both individual and societal level.

So, my analysis, uh, drawn from first-hand accounts, collected from both NDIS, uh, participants both in eligible and ineligible and also NDIS practitioners.  The people with, who were worked the NDIS or worked for partners of the NDIS, employed as planners or local area coordinators. I guess we revealed that for the individual in- ineligibility leads to an uncertain future, as existing Community Health mental health support were withdrawn negatively affecting their recovery and wellbeing.

And this also has, I guess, a broader impact.  Structural barriers at the system level, and rationing decisions applied by NDIS professionals, serving as gateway operators to the scheme led to different, differential pathways and service gaps and raising some, uh, issues around notions of social justice and fairness in the system.  I expand on this further in my presentation as I t- as I talk about, um, the findings from my, from, my research.  But first, I have got an overview of my, of my research.

So, I interviewed in total 30 people.  So, it was a qualitative research approach, and I interviewed 20 people with, um, experiencing mental illness.  People experiencing mental illness are also used throughout my present- presentation, I use the term people with psychosocial disability, because that is the term that is used by the NDIS, uh, and is also the term that the Consumers and Carers Forum Network, uh, adopted as a term for, uh, to identify people with experiencing mental illness, who, whose disability actually, um, impacts the, the way that they, um, can function in everyday life.

The, um, I recruited 30, uh, interview participants, as I said, 20 of whom experienced mental illness or psychosocial disability, and 10 of whom were, um, NDIS professionals. So, this, the focus of my research on, you can see on the left hand side of the slide in there, sort of mustard yellow, that there were 13 participants who were eligible, three of whom were from regional Victoria and 10 were from Melbourne.  And then on the right side of your slide in the red, they are the ones that, um, are separated by the, the slide image into the ineligible and, um, a few of whom I interviewed from regional Victoria and, uh, five of whom I interviewed from metro Melbourne.

The regional Victorian areas that I covered where Ballarat, (unclear 00:11:50) and Bendigo.  You’ll note that, um, all, nearly 19, 19 out of the 20 of the participants, uh, with psychosocial disability experience, uh, episodic mental illness.  Episodic mental illness means that, uh, the person can experience periods of feeling very well, uh, and then fluctuate or punctuated by periods of feeling unwell.  This may impact their ability to be able to participate in work, uh, or they may actually, um, be hospitalised or go through having experienced a period of psychosis.

So, for 19 out of the 20, um, of the participants, they identified as having episodic mental illness.  The one person who didn’t, uh, was actually he had, uh, complex needs, including dual disability of intellectual disability and, and, um, mental illness, and had, uh, struggled with understanding what I was meaning by episodic.  I guess it is a learning for me too, to be more clear, um, when using that other language for my research.

So, the interviews with the NDIS professionals, this graph here shows you that the, uh, local area coordinators are represented by the mustard, uh, coloured part of the bar graph.  And the blue part of the bar graph represents the number of planners I interviewed.  So, I interviewed 10, uh, uh, NDIS professionals overall.  And there were, uh, two people that I interviewed in regional Victoria and eight of whom were in, uh, Metro Melbourne.

The, there’s, this graph just shows you also some interesting, I guess, statistics or demographics about the NDIS professionals I interviewed, uh, the eight of the, the participants were women, uh, two were men, and overwhelmingly majority were degree qualified.  And I was also impressed by the, the kind of level of experience in mental health, that the average sort of level experience was, you know, about five to 10 years in mental health, which was, which was fantastic.  And I, I guess it was a surprise in my research.

The, the role of, um, local area coordinators versus planners is that the, the National Disability Insurance Agency planners are people that are employed by the agency or by the NDIS, and their role is to make decisions about funding levels for NDIS plans or support plans for, um, participants. They also have a role in determining whether, um, an applicant will be eligible or not.  And they, um, play a role in determining, uh, what, what goes into the plan, what kind of supports that the person will be, uh, eligible for.

The local area coordinators have a sim- similar role that they’re employed by partner organisations of the NDIS such as Brotherhood of St Lawrence.  And they actually, um, have a similar role, but they don’t make the final decision when it comes to the funding for the planners.

So, explanation of key terms.  The, the two terms that I’m being, will be using during this presentation or are using is the, um, one is the episodic psychosocial disability.  And as I mentioned earlier, this is a definition that is used by the National Mental Health Consumer and Carer Forum. And it, it describes, um, a term that they use to describe the disability experience of people with impairments and participants restrictions related to mental health conditions.

These restrictions include loss of or reduced abilities to function, think clearly, clearly experience full physical health and manage the social and emotional aspects of their lives.  Often based on the social model of disability that they are confronted with barriers that, um, uh, make it difficult for them to, um, actually enjoy a full quality of life because of the barriers, the social barriers that are introduced to them.

As I also mentioned, psychosocial disability is the term that is used by the NDIS.  In Episodic mental, um, and psychosocial disability is in the mental health context is, um, where, as I mentioned before, a person’s disability may vary in intensity, fluctuating between periods of living well, and not so well.  The other term that I’m going to be, that I’m introducing now that I’ll be using in, in my research in throughout the presentation, is the term personal recovery.  Uh, it’s one of the major themes of my, uh, research.  What it means, what the NDIS means for participants in their recovery.

Also, the NDIS promise that the, that the personal recovery model is something that will be, uh, supported during the NDIS, and that they, their recovery is something that is, uh, a fact of mind when it comes to supports, uh, for people with psychosocial disability.  So, personal recovery is the lens I use to guide my research.  And recovery is about achieving an optimal state of personal, social, and emotional wellbeing as deemed by each individual.  It is different from clinical recovery, which focuses on outcomes in the absence of sym- symptoms.

A person can experience personal recovery as having a movement away from pathology and illness toward that of wellness and personal resilience, while still acknowledging that they have a mental illness or a diagnosis of a psychiatric condition that may be permanent.  They can still recover in other ways that is not just clinical and not just an absence of symptoms.

So, my, the aims of my research, um, were to generate insights for future policy and practice by highlighting the consequences of NDIS design, rules and regulations and eligibility determinations for people experiencing mental illness.  I also had another aim was to contribute new knowledge regarding access and equity, choice and control, recovery and social inclusion in the National Disability Insurance Scheme for people with psychosocial disability.

So, in every, um, PhD research thesis, not just for, uh, PhDs for any research, it’s important to establish and have founded a, a, a research question, so that then we can, uh, confirm whether the research I’ve undertaken has actually answered the, uh, question that I raised in my ques- my research question.  So, the primary research question for me was – how are people who experienced episodic mental illness affected by the NDIS design and governing processes that are actually adapted by in policy, rules and regulations by NDIS planners and local area coordinators.  Quite a mouthful for a, a, uh, primary research question.

So, then I looked at breaking it down into three sub questions. So, uh, the first one is how is access to the NDIS negotiated and understood.  Not just by the, the people with psychosocial disability, but also by the planners and the local area coordinators who are the gateway operators to the scheme. The second sub research question is what are the barriers to and facilitators of choice and control in personal recovery.  And the third and final um, sub research questions are what are the social justice implications of NDIS access and eligibility determinations for people experiencing (influence? 00:20:25).

I’m going to briefly talk to you about the main findings, which seems a little odd to inserted at the sort of, I guess, the beginning part of my presentation.  Uh, but I will return to them, the findings.  I just want to give you, I guess, some context, when I talk about, um, the research and what, uh, what, what were what the results were.  I want to give you an overview of the main finding, so does give you context when I’m taking you through some of the quotes, uh, and what the people experienced, um, during my research.

So, and I think that also that these main findings have, have policy implications for the design of the, and, and the implementation at the NDIS.  So, I guess a key finding, which I’ve alluded to already, is that system level structural barriers and rationing decisions supplied by NDIS professionals, who serve as gateway operators to the scheme.  They lead to different pathways for people experiencing mental illness.

The first pathway is for those who are NDIS eligible is, um, I guess, a pathway to greater access to choice and control and social inclusion, and also recovery.  The- In my research, there were, there were many… There’s actually over 50% of the people who are eligible for NDIS, uh, were able to talk positively about their experience of the NDIS.  They had some, some very positive experiences ranging from, you know, um, life transforming, uh, to your simple things like access to, uh, some funding to, to be able to take some driving lessons to drive.  So, they could drive a car and get the more independence.

So, there definitely were some really positive, um, outcomes in my findings, um, especially for people who were eligible for the NDIS.   Some people who are eligible still had some concerns about the way the NDIS operated, and suggestions, suggestions for improvements, but majority were, were pretty happy with the, with the, the, um, funding they received and support they received.

A different story for the other pathway, uh, the second group, those who are ineligible, their future was less certain, as funds were being directed away from existing services toward the NDIS highlighting a service gap.  Before I go on to the other findings, so I’ll just give you an example of that.  There were- well, a couple of examples.  There was, um, one of my, one of the interview participants from Ballarat prior to the NDIS was receiving support from the council, uh, to come and clean his house.  He, um, had experienced, uh, uh, by bipolar disorder, but also, um, had a hoarding disorder.  So, he was reliant upon the council cleaner to come to his house, it was only once a fortnight.  But as he said, it would, gave him an opportunity to give him a start to try and clean up and try and make his way through the chaos that was surrounding him.

As soon as the NDIS, uh, came in, that funding through the council was stopped for him.  He tried to apply for the NDIS, was ineligible.  And so, as a result, he doesn’t have that cleaning support ongoing, and he’s likely not to get it unless he reapplies for the NDIS funding.  Uh, reapplies for the NDIS.  The other, um, other example, is a woman who was, uh, also receiving, um, some local support for access to a community psychologist.  And as soon as the NDIS came in, she no longer had that support.  It wasn’t clinical support.  She was getting that from a psychiatrist.  This was community and social support that helped her to engage with her social networks and family and, and are very important to her recovery.  That was no longer, uh, made available, um, to her.

So, that that demonstrates some of the consequences of this main finding; the difference between the two pathways.  So, that, the other three, I guess, main key findings were that, um, greatest flexible support was needed, which can be scaled up or down, it needed, um, to accommodate episodic nature of illness.  And, again, I will talk to you about that in more detail a bit later on.

And the third area was that mental health recovery knowledge by NDIS professionals is insufficient, that I talked about that mental health, uh, knowledge was good.  But it’s actually around the personal recovery model, um, which is different to the clinical model, as I talked about earlier, um, that was actually insufficient.  Fourth and final is the insurance model design and implement policy structure falls short of innovatively meeting the needs of people with psychosocial disability.

So, as, uh, from, from these research questions, I guess emerged three themes.  Sorry, not from the research question, sorry, from the, uh, interviews they held with the, uh, participants, three, um, three main themes arose, cause, and they actually addressed each of those questions.  So, the, the first sub re- research question I mentioned before, uh, was the how is access to the NDIS negotiated and understood, and that, um, the responses to that, uh, came up with a theme entitled Navigating the Eligibility Divide: Issues of Access and Equity.  That was one theme.

The second theme which was around barriers and facilitators of choice and control and personal recovery, actually talked about, um, deconstructing choice in control. That’s the theme too. So, I took apart the words “choice” and “control”.  And then the third, um research question, you know, what are the social justice implications.  Uh, I actually, that came into another theme called Shaping Recovery and Social Inclusion.

In the following split- slides, I’ll expand, um upon these observations by, uh, actually showing you some direct quotes from some of the, uh, people that participated in my research.  So, the first theme – navigating the Eligibility Divide:  Issues of Accessibility.  So, the NDIS made a promise, uh, not to set the, uh, you know, when, when we started rolling out the NDIS in 2016, at the beginning of my research, but actually, um, even at the trial phase, the promise was that the NDIS gives all Australians peace of mind that if they, their child or loved one is born with or acquires permanent and significant disability, they will get the support they need.

This was what was, was something key that I wanted to explore in my research.  If this promise is being upheld or is likely to be upheld.  This is a snapshot of the eligibility criteria, um, for someone who has psychosocial disability.  And so, you can see that to be eligible for the NDIS, NDIS, applicants must have a disability that is attributable to one or more impair- impairments related to a psychiatric condition, and that the impairment is permanent, and affects their capacity for social or economic participation.

At the beginning of my research in 2016, I was interested in exploring what this, this term permanent meant, and what, what impact would have on people, uh, who have ep- episodic mental illness. And, um fortunately, uh, it was terrific, I did not have to focus as much on eligibility around permanent (unclear 00:28:40) recognised episodic mental illness, because the Act was actually changed. There was some, uh, sorry that the some of the guidelines were changed, and included the term “allowing for people with, um, episodic disability,” not just people, uh, with psychosocial disability, but there are other disabilities, uh.  For example, um, multiple sclerosis, other, other disabilities that have, um, that fluctuate and are episodic.

So, it was in recognition of that.  So, that was terrific.  But that was a change in the beginning of my research.  It was a good change.  So, in these slides, I’m going to talk about, um, an assessment, uh, in terms of accessing the NDIS sorry, at three levels.  One is assessment that occurs when somebody wants to apply for the NDIS and to get access.  The second is assessment that relates to, uh, whether their, uh, request for funding support, uh, an NDIS plan, all the supports and the funding levels that their request is, um, accepted or not. And, um, then I guess the, the third level is, um, whether they’re actually, um, accepted into as part of the insurance scheme.

So, it’s, um, an assessment is actually a topic of currency.  Uh, I don’t know if you’re, you’re aware, but, um, there, it has been in the news quite a bit.  The NDIS, uh, assessments.  They’re changing- their plan is to change or propose a change to the, the assessment process.  And I’ll talk a little bit later about what the difference, different types of assessment are, what, how, they compare from when my research was conducted, to what is proposed now.

This, uh, assessment process, uh, that is proposed now wasn’t linked to my research, but it certainly has their, um, assessment was something that I covered quite a bit in my research.  So, I think that it is relevant for me to discuss that today.  So, I’ll talk to you about the key differences there.  And what from my research, I can tell maybe the impact of these new assessments.

But these the quotes that, um, that I’ve got on the screen now, really, I guess, talk about the access to the NDIS.  So, Odette is actually her application for the NDIS was refused.  And I’m just going to give you a little bit of background to it, to Odette.  Odette described herself before the NDIS as someone who is well, is a mother. She’s a casual childcare worker.  And she’s trying to repair relationships with her family and friends.  After applying for the NDIS, and being rejected this, her, her mental health actually declined.  She also talked about, uh, the loss of protection when, um, she couldn’t access the community psychologists that I’ve just talked about earlier. And she said that when she is unwell, she changes from being mother, carer, childcare worker, to patient who cedes parenting to her ex-husband, parenting controls, and to someone who is medicated.

When she presented to the NDIS, she was experiencing a period of wellness. And, um, it’s sometimes described as the hidden disability, uh, psychosocial disability or mental illness because appearances can be that you appear well.  Odette said that this actually damaged her opportunity to get access to the NDIS.  And she says in this quote, the NDIS are not taking people like the me, because I’m not mentally unwell enough to qualify. On the flip side, you can’t get income protection or insurance, or you can’t get travel insurance if you have a disability. So, one system is telling you this, that you’re not disabled enough.  The other system is telling you that you are too disabled. It highlights the, uh, I guess complexity around an insurance scheme that’s based on a requirement of what’s called reasonable and necessary standards.

This is another, um, example of, uh, an application to the NDIS. And this is a person who was also, um, uh, deemed ineligible.  Charles was in regional Victoria.  And he talked about the, uh, process of applying for the NDIS.  I asked him, “Did anyone help you with the NDIS application?” He said, “Yes.  But the workers didn’t have any information about with what was required.  It was very new, um, at this point, I should qualify that in.  The workers just said state the worst case scenario. If you talk about the worst situation, not the best.  And then I said, “How did that make you feel talking about the worst?” And Charles said, “Awful.  You feel disabled after that.”

So, during my research, um, assessments were inconsistent and tended to focus on illness to ensure eligibility.  In this case, Charles focused on his illness, he, uh, felt like he was labelled as being disabled and in the outcome was not positive for him.  He did not get access to the NDIS.  The, uh, so the quote, I guess illustrate, illustrates one of the themes discussed, um, under this this area of navigating the eligibility divide and is, it, it is an indication of how being labelled affects in, ineligible participants wellbeing.

So, when I focused on this, uh, assessment, I was writing up this research I was, I was actually, um, based on the experiences of people with mental illness when they talked about their application and focusing on the worst, I actually was critical of the existing assessment process at the time, which seemed to be focused on collecting as much information as possible about how debilitating, um, the, uh, illnesses is,  um, and so forth just so they can get through the NDIS.  And, I, I was really hoping that there would be a focus on sort of a strengths based approach.

The new assessment process, to its credit, has one element that I think that I do agree with, and that is going to be focused on strengths rather than deficits.  So, these two quotes are actually from NIDS professionals, two planners, uh, one in regional Victoria and one in, uh, Metro Melbourne.  They, they describe the, uh, inconsistency in approach.  So, um, the, the, uh, the first one is by Erica regional Victoria, not her real name, none of the named I used in these examples are real.  Uh, and she talks about, uh, someone who was actually asked, asked for, uh, some gym equipment to help their mental health recovery, you know, doing it is well documented and evidenced that physical health improvements leads to, uh, better mental health improvements.

Erica says, “I can’t see a reason why you wouldn’t give access. The product is only worth $3,000.  And people are the planners laugh at me about that.” If it actually gives this family a quality of life, I’m going to agree to it. I’m a delegate, I’m going to put it through.  Erica has a, is talking about being the delegate of the NDIS CEO.  As a planner, she is delegated the responsibility to make decisions about, uh, certain levels of access to plans.  And, um, in this case, she’s very supportive of the gym equipment and recognising the importance of that.

And as a del- delegate, she has, um, the responsibility to be able to make that decision.  She has the delegated authority to make that decision.  So, she’s saying she sees the value in investing $3,000 in gym equipment.  In contrast, Bree says categorically, “We never approve gym membership, ever. I mean, it’s expensive, as much as we would love to. And especially I know how much exercise does help mental health.  We can’t do it.”

This is, this quote comes from another, uh, one of the applicants who…  I’m sorry, actually NDIS, um, eligible. She was delighted with her funding package, she got, um, the best kind of, I guess, psychosocial support that she could ask for in her first, uh, first year.  But after being with the service, with the NDIS for a year, she was, um, given, I guess, some advice from one of the people that worked in, um, the field to say that it was unlikely that she was going to be able to use the, uh, to have the similar amount of funding for, uh, therapeutical support, uh, after one year.

The reason that was given that she would probably not get access to that level of funding, again, was because she did not use up all of her funds in the first year.  The reason she didn’t use up all her funds in the first year, were for a couple of reasons.  One, she had some difficulty finding the right level of support for her; the support worker was, uh, in demand. The other is that she actually had a period where, um, she was feeling unwell and hospitalised and so she couldn’t even use any of her NDIS funds at the time.

So, her, her, um, quote there, you know, she said, “I’m not looking forward to my Assessment Review.  I’m not sure who’ll be supporting me anymore.  I just fear that my best interests aren’t being looked after.  I feel like I’m losing control in my own therapy.”  So, I talked about the beginning of this theme around access and equity and you know, navigating the eligibility divide.  I talked about, um, assessments, having, having quite a lot of, um, focus during this, under this theme.

So, I thought I’d just spend a moment or two, um, talking about, uh, assessments in current time, there’s not actually, uh, I guess about my research, but it is, it does, um, have some relevance from my research.  And I believe that some of the findings for my research will have, can have some impact or sway on, um, how those assessments, um, might be viewed their new assessments.

So, the, the left hand side tables describe the assessment requirements during the period of my research when I collected the data when I interviewed the participants.  So, there was quite, um, an involved process, that in some cases, took months, uh, to, uh, actually collect all the information. It was time consuming. But it has some benefits, it meant that people were eligible.

So, in the current situation or during my research, um, the assessment is to be completed by the applicant psychiatrist, GP or their most appropriate clinician.  The, um, in contrast, the proposed, um, new NDIS assessments, the assessor is unknown to the applicant, is it the healthcare professional or the applicant, or the applicant usually sees?  What are the disadvantages of that in terms of people, um, not I guess, not just for psychosocial disability, but I guess all disabilities, but particularly for people with psychosocial disability, who may experience, um, levels of distrust? Uh, uh, or, take a while to establish that trust and rapport.

So, if they’re asked to talk about their, um, experience, tell their story yet again, to a complete stranger, this actually may have an impact on, um, their ability to engage with the NDIS.  And their ability to develop report.  If they, if the assessment is based on you know, the, the information that they can get from, you know, a GP or a psychiatrist or psychologist and they know, there is a much better chance that they will engage.

The, um, other current nex- the second box, the middle box is that assessment currently is based on individuals im- impairments and individuals’ needs.  The proposed, um, uh, assessment will be, uh, based on standardised ass- assessment tools that may or may not be relevant for people with psychosocial disability.

The, um, third area is the knowledge, um, that, that the, when preparing for, uh, the evidence, I guess, to apply to the NDIS, that somebody’s knowledge of previous hospitalisations, impairments over the past six months, or even longer for people with fluctuating conditions, it’s actually critical to, um, developing a pattern to see what kind of NDIS funding plan they will receive, whether they’re eligible for the NDIS.  It, it requires someone who knows them quite well as to, you know, what, what has been their experiences of mental health in the past.

In the new, um, assessments, an independent assessment will take three hours and got to collect all that information. Again, when I was actually preparing this, uh, this presentation today, I did have a look there. The Community Mental Health Association of (unclear 00:43:43) Bodies, in August last year, uh, prepared a response to the proposed new, um, independent assessments.  And they, uh, highlight a number of criticisms. And they said before, uh, independent assessments take place, it’s, uh, important that that, uh, the, that the quality of the assessor is paramount.

That they should, for people with psychosocial disability, they require a highly skilled and experienced assessor, that he is, has, is trauma informed and recovery focused and culturally aware.  And the quality of the assessment tools, um, it needs to work for people with psychosocial disability. And the three hours is just not enough to complete such an assessment.  And that the availability of skilled assesses, um, especially in regional and remote areas is important.

So, that’s I just guess, um, uh, a look at how the, my research that was conducted in you know, collected that information in 2018 and 2019 has relevance to today.  The second theme is, um, deconstructing choice and control.  So, this this, I guess, map, kind of Mind Map, what’s the sort of themes that came out of this deconstructing choice and control, uh, area.  And there’s a number of areas where, uh, choice and control was actually deconstructed since the, the primary source of information for, uh, the primary pillar of the NDIS.

And, yes, it was, uh, there were certainly some, uh, opportunities for facilitating choice and control.  But also, I noticed that there was quite a number of participants who had issues around using the word control.  So here, there were some, uh, Arania, who’s actually eligible, she found the whole idea of control and choice, uh, little bit overwhelming.

So, she says, “Well, at the planning meeting, I just felt overwhelmed about the amount of choices.  And the more options that you’ve given, the more unsatisfied you are with a selection, because you’re missing out and other things.” She also said, “I don’t have control.  And sometimes I need other people to take control for me.”  “This, this, suddenly, all this stuff is about the NDIS and they’re supposed to be helping me but I feel overwhelmed with it.”

Another example of control is, um, of Esther, who, um, has her actual mental illness is controlling in itself.  So, she found a word control, very disturbing, “I think control is sometimes negative, because my illness is highly controlling.  So, it’s difficult to work out what is my need for control, and what is largely dictated by the human psyche, which can be maladaptive.”

There’s, um, others that, uh, you know, got support and others who didn’t.  So, I’ve just talked about Janice’s experience when she came to the NDIS.  I mentioned before she pretty much got everything, but she didn’t ask for a million dollar home or anything like that.  But she got counselling, which she needed.  But one, um, planner talks about, “We don’t have to provide counselling because it’s already sitting out there. You don’t have to come to the NDIS for that. You’ve got Lifeline, your GP or other opt- opportunities for counselling.”  I don’t think the planner really understood the role of, uh, social support and counselling.

The third and final theme is shaping recovery and social inclusion. I mentioned before that there’s two different types of recovery. One is personal recovery approach.  And the other is a clinical, uh, recovery approach. The first one focuses on personal meaning growth and discovery, while the other focuses on, uh, clinical or absence of symptoms using clinical language.

The, uh, recovery here that, um, is, is an illustration of the way that I tried to find out what people thought of recovery and the NDIS.  So, during the interview, I used 14 cards to give to participants to, uh, outline what their recovery goals were.  And on the left hand side of the page, I asked them to, uh, put down the cards, what that, what they thought recovery goals were important to them.  And then ask them to identify an individual recovery goal, in this case, the person put, to have, uh, time and facilities to, uh, paint and create art.  And then I asked people, uh, to respond to whether they thought the NDIS was helping them, uh, meet their recovery goals.

This was the impact, the potential impact. So, for, uh, and it just shows you that the one of the most, uh, I guess the recovery goal that was listed the most was the finding purpose and finding having hope. They were considered really important recovery goals.  But their response where the blue line is, is that the NDIS did not really support them in their, uh, achievement of recovery, especially for those who are ineligible.

The, um, a sub theme that I really identify was that what I called, “That’s not very insurance-y.”  And this, this sub theme transcends all the three themes that I mentioned before choice and control and recovery, inclusion and access and equity.  I drew, I guess attention to this because I gave the label of this theme, um, “That’s not very insurance,” it’s appropriated from an advertising campaign of Amy.  And, uh, they shall in their advertising campaign, they use this this logo, this slogan, “Not very insurance”, to challenge the notion of what insurance can actually be. And delivering insurance in a not very insurance way.

This insurance firm uses a slogan to promote their focus on customer needs, which they claim is innovative, flexible, but also efficient.  Also, an insurance model, the NDIS makes similar claims.  But I think through my research, I said that the NDIS falls short in meeting the benchmarks of, um, insurance.

So, coming back to the, my, main findings, I’m nearly concluding my, um,  presentation. And again, it says the main findings were there were two pathways, um, for people ineligible and eligible based on the structural design.  That flexible support needs to accommodate episodic nature of illness, that mental health recovery knowledge by NDIS professionals is insufficient.

And then finally, relating back to the Amy slogan, the NDIS insurance model for design falls short of innovatively meeting the needs of people with mental illness.  Before I close, I just want to just briefly tell you about the research advisory panel.  I was absolutely thrilled to have, uh, an advisory panel which consisted of, uh, some professional researchers in Community Mental Health Organization’s a member of the National Disability Insurance Scheme, and significantly two people who have lived experience of mental illness and the NDIS.  Their input was invaluable to my research.  They gave some excellent suggestions for ways that I could improve my research and I am very grateful to them.

At the beginning of my presentation, I suggested my research was about pathways, and the pathway to recovery is often described as a journey. I discovered throughout the, my PhD journey, that the research participants, recovery is indeed a reality if the appropriate supports are in place.  The stories that the 30 people interviewed in this study, I think, serve as an important reminder of both the responsibilities and challenges that NDIS policymakers face, in supporting people with psychosocial disability, and instilling hope for a brighter future.  They’re also testament to the urgent task of ensuring the appropriateness of future policy provision and practice for reducing rather than entrenching in equity for those already marginalised in contemporary society. Thank you for being here today and showing your interest in my research.

Melissa Hale:
Thank you very much, Liz.  That was really useful and there are so many complexities when it comes to the NDIS and the intersection with psychosocial disabilities.  So, I truly commend you for taking this one on.  So, I think before we go to the questions, the first thing I would like to highlight is that the slides and the recording of the session will be available on the DARU website as usual.  So, you’ll be able to look back and watch and get some of that information down.

So, we’ll go question and answers now. So, how do you think the newly announced mental health reformed in Victoria addressed the service gaps in access?

Liz Hudson:
It’s a really good current question, I think, to ask because the, you know that the, the, results of the, the Victorian Royal Commission into mental health, I think, uh, highlighted the need for, for significant reform.  And I, along with many of my, uh, colleagues where I currently work in mental health, we recognise that, um, it is terrific that there are the reforms that, um, uh, address some of these gaps.  So, I’m, I guess, I’m hopeful that, uh, they will be able to address some of the gaps, uh, especially for those that who are ineligible for the NDIS and that those reforms will be supportive.

Melissa Hale:
Yeah, and hopefully it stays long term rather than just short term thing. Okay, next one. We need to change the planning conversation. Are there assessments already out there that focus on strengths rather than deficit?

Liz Hudson:
Yeah, that’s, that’s a great question. And I know I haven’t seen the full detail. But I mean, I alluded to this in my presentation that the proposed the assessments that, the independent assessments that are proposed, they are  for the NDIS, well, there, there, there are flaws definitely. And they’ll need to be… I mean, I am so grateful that, um, have the strong advocacy to put those proposed assessments on hold while they’re being reviewed.  But the focus is supposed to be on, on strengths. And so, but I haven’t seen that kind of detail.

I have had an experience unrelated to my research in, uh, strengths based exposure approach to managing, um, disclosing your, uh, mental illness or psychosocial disability in an employment situation.  And that actually, um, is used as a document that focuses on using words of strengths, that actually the person with a disability determines what, what language to use when they’re describing their disabilities. So, it’s a strengths based individualised approach. So, I’ve seen some results, positive results from that research, and, um, uh, and hopefully, something like that will be utilised in future assessments.

Melissa Hale:
I think everything will be better than the independent assessment at this point, I think.  Last question, which is a bit of a long one, so I’m going to look away from my screen.  I’m interested in knowing about when the NDIS accessed application were rejected. Did you explore the actual section of the NDIS requirements that were not met?  As a disability advocate, we regularly review applications for clients and advise accordingly.  Very often, the provision of the right type of information is missing.  Lots of evidence about diagnosis, little about impact on the six domains of functionality.  Generally, with our assistant, clients will make the access requirements sometimes after being rejected two or three times previously.  Did you get that?

Liz Hudson: Yes.
Firstly, can I commend you on, um, on supporting people in, you know, finding the right documentation and addressing functional, functionality, it’s critical to access the NDIS.  Uh, of the seven people who I interviewed who were not, uh, successful in getting the NDIS, um, five, uh, were in the process of appealing.  So, they knew the reasons why they weren’t accessing, when, were rejected from the NDIS. The two people that did, were, were not going to appeal, they, they actually lost the desire.  And they weren’t told the reason why they weren’t.  So, they just gave up, they resigned themselves they were going to, and that’s where their, their future was uncertain, their recovery uncertain.

But the others that were, um, appealing, there were differences in the reasons for their, um, rejection. I think three or four were related to the documentation wasn’t enough to describe what impact, um, has on everyday life, but the disability has an impact on their everyday lives.  Um, for the others, it was actually, you know, because it was early stages of the NDIS. So, it was just lack of knowledge about how to complete the forms, and finding the right support person, so forth. So, it did kind of vary. There were no uniform responses as to why they weren’t successful.  But it is terrific that they’re an organisation such as, um, where the questioner comes from, who actually supports people in their applications, good on you.

Melissa Hale:
Yeah, yeah, I couldn’t imagine how frustrating it might be, particularly if you have a mental illness on top of any other disability as well.  And then having to go through that process again, and again and again, and feeling like you would want to give up and just chuck it.  I can totally understand that.  Liz, thank you very much for being so generous with your time and expertise in this area.  It’s such a messy space to be in having some research and evidence about the impact of this process on people with psychosocial disability could really help create change.  So, thank you very much.

Liz Hudson:
My pleasure.  Bye everybody.

Melissa Hale:
We’ve come to a close to our last session of the series. So, thank you to our online interpreters and captioners for their hard work today. Thank you to Show Division for bringing this production to you today.  Have a wonderful week everyone, stay safe, and see you next time.

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Author:
DARU

Date published:
Wed 9th Jun, 2021