This was the second session at the Advocacy Sector Conversations forum held at the Queen Victoria Women’s Centre on 27 November 2018.
Overview
While the tussle for the provision of mental health services continues between state health departments and the NDIS, mental health consumers are feeling abandoned and confused. Jenny Bretnall presented a paper at the National NDIS Mental HealthConference in October, representing the Victorian Mental Illness Awareness Council, where she talked about the detrimental effect of uncertain support services. Jenny gives a repeat presentation here even though she has now moved on to a new position at Independent mental Health Advocacy (IMHA).
Useful Links
resources mentioned in this presentation included:
Transcript & Audio
NATALIE CORRIGAN, MC:
Now I would like to introduce to you Jenny Bretnall from Independent Mental Health Advocacy. Recently Jenny in her old role at the Victorian Mental Illness Awareness Council presented at the second National NDIS and Mental Health Conference in October of this year.
She will again share her presentation today that is the NDIS and Mental Health a Game of Snakes & Ladders, Insight into the issues regarding the integration of the NDIS into the broader health system.
The landscape for mental health is in fluctuation and no one at this stage knows with certainty what it will eventually look like. While service providers, the broader health system and the NDIS continue to tussle in this time of change the one constant in all of this are the consumers of mental health services, people with mental health conditions.
Focusing on delivering services whether that be the health system service providers or the NDIS, Jenny will be providing a snapshot on the current state of play or abandonment felt by consumers of mental health services.
Thank you Jenny.
JENNY BRETNALL, INDEPENDENT MENTAL HEALTH ADVOCACY (IMHA):
Well that was certainly a long introduction, thank you very much.
Societies understanding of mental illness has come a long way over the centuries. We now know that hearing voices doesn’t mean that someone is a witch or that they’re possessed by spirits. We now know that an intellectual disability is not a mental illness nor is epilepsy. We even know that homosexuality is not a mental illness. All of these things and many more including vagrancy would’ve resulted in a person being locked up in an asylum.
Then we look at how some of the treatments have been changed from ice closets to water emersion to straitjackets and lobotomies. When I was going through this list with my mum, which you do, she said, “Don’t forget, don’t forget they used to electrocute people.” I had to say to her, “Mum, they still do ECT,” and she just was mortified.
The experiences I put forward are very real experiences of people I talk with every day in my job. Mental illness is not an exact science. Psychiatry is not an exact science. Peoples understanding of mental illness is intrinsically linked to societal norms. In the past, all of those treatments would’ve deemed to have been in the best interest of people suffering in their supposed mental illness.
Today treatments and supports provided for people with mental health conditions are also delivered from a well-meaning perspective. I wonder though in 50 years’ time will society be looking back at what we consider to be mental illness and the treatments given today with a shake of their head in disbelief and say, “What were they thinking?’
Treatments and services can help some people but they can also hinder. We must be open to scrutiny and self-regulation. Every single intent and notion as it relates to mental health conditions must be expendable. We all need to be open to change.
Mental health conditions come in many forms and are experienced in many different ways. This will not be news to you. Just think for a moment though many mental health conditions arise from trauma and overwhelm. A situation or environment, a person experiences that is so intolerable the brain and body does what it has to in order for the person to survive.
This is a very simplistic version of trauma and a very normal and human response to trauma but sometimes simple is better. Trauma is in indiscriminate. None of you can know with definite certainty that you will not experience such a traumatic event or circumstance in your life that your brain will do what it has to do in order to survive.
Just imagine you’re going about your life getting on with business. You might be helping people with mental health conditions, providing a service or writing policies for the benefit of people. You feel good because you’re contributing to a worthwhile cause. You’re doing good for humanity. You have an income, family, a home, friends and you can socialise. You may even have hobbies or things that you can do that you can pursue.
There will be times when things can be monotonous, responsibilities can be heavy, families can be cut and you’re short of cash. These are problems of the Western World.
By pure luck of geography, you were born or chose to come and live in Australia. If you were in Iraq say for instance you would be literally trying to stay alive amongst roaring factions yet here you are in Australia, the lucky country forging you’re way ahead choosing how to live your life when out of the blue or even sneaking up on you the big T happens. It’s nothing like you’ve ever experienced before and your brain and body does all it can to keep you alive.
This will happen either to you or someone that you care about. According to the Australian Bureau of Statistics, one in five Australians experience a mental health condition during a given year and almost one in two will experience a mental health condition at some point in their life.
Life as you know it has irrevocably changed. You can’t control the way you think of things or the thoughts that invade your mind. You can’t concentrate or remember even little things. You are constantly sad and anxious and you beat yourself up over it because you can’t seem to do anything. You can’t function. You can’t go to work and you lose your income. You can no longer afford to pay for the life that you’ve been living let alone the bills, mortgage or rent you need to pay in order to keep a roof over your head.
Friends start to drop off and you don’t care or even notice because you just need to be alone with no additional stress or obligation, just to exist. It’s hard to even form words. Everything is hard and you are constantly exhausted. After some months, maybe even years you learn to adapt to this new way of living. You become the master of avoidance and denial. You crave your solitude and you do whatever you have to in order to feel safe.
Isolation is your new best friend. People have started treating you differently like they’re scared of you or that what you think is no longer valid. They dismiss you and all of your life experiences and knowledge. To them you are broken and no longer useful in contributing to society.
Sorry I’ve skipped ahead. In a work setting, I’m a firm believer that every person starts the day with the intention of giving it their best. This doesn’t always eventuate but the intent would’ve been there initially. Why is there this intent that a person has? It’s because they want to believe that what they have to contribute matters. Really, when you hone down on this it’s because they intrinsically want to be valued.
This is no different for a person with a mental health condition on their personal recovery journey. If this was you, this would be your deepest longing as well. Remember this when you’re working with people, writing policies or designing new support programs for people with mental health condition. Think about how you would like to be treated if it was you reaching out for support because it takes a lot of guts to ask for help.
Think of the times that you needed to ask for help with something really significant, something that you’ve needed desperately. From the onset of your request, there is a power imbalance. You need something and the other person has it. It’s entirely up to the other person as to whether they give this thing to you and if they do you feel obligated to them.
There is also an element of failure and worthlessness you may experience of not being able to meet your own needs. Imagine the depths a person has reached when they have to ask for help for their own mental health and the courage that it’s taken to ask for this help.
Why have I raised this? To remind each and every one of you that we are talking about people, real live human beings not clients, consumers, patients or participants. People. People like you and me. Labels impersonalise and box people when we’re all so much more. Labels can trap people and confine them, stunting growth.
I understand the need for labels to describe something to categorise something to assist in workplace systems but it’s a sad day for humanity when we forget that labels assist workplace systems and start seeing people as their labels.
Keeping in mind that we all want to be valued for who we are and the guts it takes to ask for help, add to this the mix of symptoms caused by a mental health condition and the stigma attached, enter stage left, the NDIS. It’s been designed to provide assistance for people with a disability to develop skills to optimise their ability, to live an ordinary life and to exercise choice and the support they receive.
Fantastic! Sounds perfect because as human beings navigating a self-recovery journey we know what would benefit us the most, what would help to give us the best shot at living an ordinary life. Because after all each one of us is different and that’s where the NDIS really steps up because it recognises this difference and wants to support our own individual goals. Finally, we will be listened to and validated.
In order to pave the way for this new way of doing things in Victoria, most of the old services and supports were removed. This in itself has been quite challenging for people with a mental health condition because while these services were not perfect they were something. Support was there if needed. Like a pair of comfortable worn in slippers people knew what to expect, which relieves some anxiety. Predictable and reliability also friends for people navigating their own personal recovery journey.
Finding out that these services were no longer available was like pulling out the rug for many, leaving them off balance out of kilter, disorientated, confused and for some crashing to the floor and needing hospitalisation. A lifeline was thrown out though, services would continue through the NDIS and the NDIA backed this up saying that no one would be worse off.
Like all things shiny and new the NDIA showed some promise. People were being transitioned over to the scheme from defined programs and there was some excitement with personal goals being supported. Really, our spiny sensors should’ve started tingling with the NDIA calling people participants. The Oxford Dictionary definition of participant is a person who takes part in something so while some are taking part some are not. In the case of the NDIA, many are not.
The best way to demonstrate the NDIS for people with psychosocial disability is to use an analogy of the game of Snakes & Ladders. Why a game you may ask, because the NDIS has participants, rules and you need a lot of luck. Take the cohort of people with psychosocial disability set adrift from all that they’ve known and give them a choice. Play the game or get no supports. What a great start to the NDIS mantra of choice of control.
Just for the fun of it let’s put in some spinning playground equipment before the starting line and see whose left standing all be it in a confused, anxious, distressed, traumatised and unwell manner. Just to roll the dice a person will have to add the label disability on top of their mental health issues. Identify the depth of evidence needed, come up with money to pay for appointments to get the evidence needed, wait sometimes months to get appointments with their specialist to get the evidence needed, ensure the evidence needed is written in NDIS language focusing on what a person can’t do.
Rely on health professionals to agree to write up reports despite a lack of information on how to do this. Hope that their health professionals have the very specific expertise to write NDIS evidence. On top of all that revisit and refocus on all the parts of their life that cause them anguish, pain, feelings of failure, unworthiness, guilt and feelings of helplessness.
All this while living with a psychosocial disability that in itself can affect memory, thought processes, organisational ability, motivation. All this while a person is struggling to stay out of bed can take weeks to build up the courage to make a phone call is literally battling to stay alive. All this to get some continuity of service to support their recovery pathway that they previously had.
Revisiting trauma is traumatising within itself. No wonder people drop off the pathway leading to the NDIS. They either end back up in hospital or hide and isolate from society to protect themselves wanting nothing to do with the NDIS and the supports that they really need. Others have to get well enough again just to attempt the process again and they haven’t even begun to play the game.
It’s hard to believe that we’re so cruel and inhumane. I’m not going to elaborate on each role of the dice of this NDIS Snakes & Ladders game. If you’ve had anything to do with the NDIS, you’ll know the snakes such as one-dollar plans, removal of support coordination, insufficient funds, lack of psychosocial disability knowledge with both the NDIA and the local area coordinators, lack of early intervention and the appeals and review process.
There is a vicious snake I want to mention though and it’s called Access Denied. Two areas in particular keep popping up being treatment and substantial functional impact. First of all, we’ll look at treatment. The main reasons for denying access given by the NDIA is that not all treatment has been exhausted including compliance with medication.
If the NDIA and their lawyers don’t know that one not taking medication can be a psychosocial disability within itself, there is no overwhelming evidence to suggest that certain treatments can cure or in the NDIS lingo remedy, psychosocial disability. That the side effects of medication can in fact create new psychosocial disabilities that a person has a right to choose what treatment they want then the NDIA has no right in assessing psychosocial disability applications for the NDIS.
Not only are people being discriminated against, punished for having a psychosocial disability they’re also at risk of losing perhaps the only support that they have left in medical practitioners. Some medical practitioners are refusing to complete further evidence as they feel that their expertise in previous reports has been disregarded. The only loser here is the person who is meant to be helped.
Then we look at substantial functional impairment. The NDIS Act 2013, Section 24, which I’m sure you all know on disability requirement Part 1A states that the person has a disability that is attributable to one or more intellectual cognitive neurological sensory or physical impairments or to one or more impairments attributable to a psychiatric condition. Further 241C states the impairment or impairments result in substantially reduced functional capacity to undertake or psychosocial functioning in undertaking one or more of the following activities.
Regardless of the NDIS Act 2013, separating psychosocial disability from other disability entities with the word or, somewhere along the line psychosocial functioning has been lumped together with functional capacity for other disabilities to the point that the NDIA were saying that the functional impairments had to affect a person on a day to day basis. Now they’re saying that the functional impairment is on an everyday basis.
Nowhere in the NDIS Act 2013, are the words day to day and every day used for access to the NDIS. Once again this demonstrates a lack of understanding of psychosocial disability and it’s episodic nature and the failure of the NDIA to utilise appropriate assessment tools.
There are some ladders in this game though where people have had a fantastic experience. The NDIA and LACs have been wonderful and supportive, demonstrating a total understanding of psychosocial disability. There have also been attempts by the NDIA to build in more ladders, with trialling new pathways. It’s not all doom and gloom but it still feels like a game, as it appears to be reliant on luck. Luck in getting the right NDIA assessor, planner and LACs.
Fortunately, both the Federal and Victorian State Governments have recognised the gaps in the mental health systems including the NDIS. They’ve witnessed and acknowledged the large sinkhole that people with psychosocial disability have been falling in. In response to this, the Victorian State Government has pledged $70 million over a period of two years to support people with psychosocial disability that have been deemed ineligible for the NDIS. The Federal Government are putting in about $6 million. This is wonderful news.
A system which enables people with psychosocial disability to live an ordinary life, supports their goals and aspirations, gives them choice and control and assists in their own personal recovery journey is needed. Any system, which discriminates, devalues and injures a person further, should be stopped.
The NDIS as it relates to people with psychosocial disability needs a major overhaul including simple and more appropriate assessment tools. Including early intervention to prevent a worsening of circumstances in disability. Including identified supports like a gym membership. These are things that could really assist a person on their recovery journey.
When a person who is able to work has the luxury to utilise services like the gym because they want to get fit this is normal. It is not normal however, for someone who has lost their income, has very limited resources struggles with their weight and ultimately self-esteem as a direct consequence of their mental health condition, experiences anxiety and distressed in being able to do things that any other person wouldn’t even think twice about doing and therefore in contemplating going to the gym is a major positive step.
When something flouted as being so beneficial for psychosocial disability is out of reach this is not normal. Any services designed to support a person on their personal recovery journey needs to enhance not damage. Needs to value the person not disregard. Needs to see that mental illness and psychosocial disability are individual to each person not a one size fits all.
How do these services identify what is really needed? By listening to what the person is saying they need, because they are the expert of their life. It may take a while for them to really verbalise what they need but the answers are in them. Remember the person who is reaching out for help who knows what would work for them could be you.
Thank you.
MELISSA HALE, DARU:
Thank you very much Jenny that was a fantastic presentation and the same one that you presented at the last NDIS conference. Fantastic, well done.
Time for questions.
QUESTION:
Hi, that was a fantastic presentation. I have a couple of thoughts. You did a really thorough job at identifying some of the core issues in terms of people with mental health issues accessing the NDIS and this is conversations I’ve had with my friends who themselves struggle with mental health issues.
We were sitting around having brunch one day and talking about have any of you applied for the NDIS. I have cerebral palsy but I also have anxiety but we kind of joked and came to the conclusion that it’s my physical disability that would get me over the line.
JENNY BRETNALL:
That’s true unfortunately.
QUESTION:
Yeah, and we kind of knew it. In terms of having identified the barriers what solutions aside from making the clients more involved in their own treatment, are you doing on their behalf to make sure they can get that NDIS?
JENNY BRETNALL:
In my previous role as the NDIS educator at VIMIAC, I was going out and talking to them about basically what to expect because as far as I’m concerned information is fantastic. They knew what to expect and the reality of the situation rather than the spin that was going to help. We have also developed resources to help them. VMIAC also has an advocacy NDIS team Appeals and Review team as well which helps.
Part of the reason I shifted from VMIAC to my current position was purely around this and because in this role I’m developing it’s a project to develop a peer facilitated NDIS self-advocacy package for peer workers basically. Training up peer workers to go out and talk to consumers and teach consumers about self-advocacy in relation to the NDIS from woe to go in that sense and also carers that encompasses. That’s why I’m doing that. It’s pretty exciting and it’s very very much needed.
We talk about we’ve been trying to educate practitioners. We’ve done a lot of education with practitioners, a lot of education with providers even in ways to word things, what needs to be included. It seems and I guess a lot of you would have this experience too that as soon as you find okay this is how we actually do it the NDIA changes the ballpark and you’ve got to find something they keep on adding to what’s required.
I actually think that there’s major human rights issues that are going on. We actually need to make a stand from a human rights point of view because while it was fantastic the lady earlier presenting, as some of the people were talking about, it’s like a slap in the face in the sense that providers are going to be under this scrutiny but the NDIA isn’t. It’s just pretty disgusting really.
MELISSA HALE:
Any other questions.
JENNY BRETNALL:
It doesn’t have to be about the talk it can be about psychosocial disability. Neil Turon Lane from VIMIAC was also coming to talk about the latest changes to mental health but there’d been an incident at VMIAC so he was unable to come at the last minute.
QUESTION:
Hello, it’s me again. I have another question something that really stood out to me at the beginning of what you said. My parents were psychiatric nurses just recently retired. You brought up the issue of electroshock treatment and how it’s still being practiced. I remember the day my mother told me that as a teenager and being appalled.
When I went into my 20s I made friends and acquaintances a small fraction of who had received ECT and received great benefit from it. I think when people think ECT they think of one flew over the coo coos nest.
JENNY BRETNALL:
I’m sure that’s what my mum was thinking too.
QUESTION:
It’s very different from that. My mother had to explain these days they use very different strategies. They sedate the patient they’re more obviously careful how they apply it. Do you think it has a place in mental health treatment in extreme cases?
JENNY BRETNALL:
This has been life’s dream. I think that yes, but I think that because there are some people that actually want that, I don’t think it should be forced on anyone at all. It’s the person’s choice and unfortunately still people are being forced to undertake it.
In fact, the NDIA are saying that in treatments and not all treatments have been tried and they’re actually using ECT – well you haven’t tried ECT yet. That’s pretty disgusting for what’s going on. It’s like I talked about earlier, people think that they’re doing the right thing and they’re actually meaning well in the treatments that they provide.
The reason that I raised what was happening back then what’s happening now is because I’m sure in the future people are going to look back and what we’re doing now they’ll just be shaking their heads. It’s that whole thing about not ever holding fast that this is the answer and stuff like that.
There are different treatments that will work for different people and people respond to that. We know that we need variety but no one should be forced to actually have a treatment. It is their human right to decide what’s right for themselves at the end of the day. Does that answer the question a bit?
QUESTION:
Yeah.
RUTH, PARENT:
Hi I’m Ruth, I’m a parent I’m here as a mum. Can I ask where autism comes into the psychosocial –
JENNY BRETNALL:
It doesn’t.
RUTH:
Some people think it does.
JENNY BRETNALL:
No, it’s not being included at all. Autism is a really tricky one. I think it’s shocking what’s happening within the NDIA because for those of you that don’t know the NDIA actually are relooking at people with autism who are already participants to see whether they should stay participants.
To me that raises a red flag for anyone else that’s already a participant and you know what they have to go through to get there that at some stage perhaps the NDIA might give them a tap on the shoulder to say you don’t fit anymore. I think that’s a bit of a slippery slope.
SIMON ANDERSON, DEAF VICTORIA:
Hello, I’m Simon Anderson from Deaf Victoria. I’m just wondering if I could ask you about our health system, the NDIA and how they work together to support people who have mental health issues. I wonder how well they do this work together and how we can make sure that these consumers don’t fall through the gaps.
JENNY BRETNALL:
Well that’s been the absolute major problem in that consumers have been falling through the gaps. There have been people who have completed suicide, there have been people ending up in hospital after 20 odd years, who have never been back in hospital who are ending back in hospital.
What happened was the State Government gave its money as you would be aware for mental health services, all the money to the NDIA and there were absolutely no services left for psychosocial disability. What we saw happening was that as the NDIA was being rolled out in areas people who had been under the care of service providers they were being shut out totally shut out because they either hadn’t been accepted or their applications hadn’t been processed yet, their supports were totally gone.
I found it really curious that I think it was earlier on this year that the State Government announced all this funding, not the one I was just talking about, but all this funding to increase hospital beds, for more money in emergency and all that sort of stuff because that’s what was happening people were getting sicker basically.
The NDIA are very very clear in saying things like hospitals and education and all those other things has got nothing to do with them. They have to sort of step up and demand what’s going on. The NDIA doesn’t provide any services for that so they actually don’t work together in that sense.
Another shocking fact is that no one with a psychosocial disability that I’m aware of had been accepted in as an early intervention case at all with the NDIA saying that early intervention with psychosocial disability purely came under the realm of medical. You think of all the young people who may not have a diagnosis yet and you don’t need to have one to actually apply but the likelihood of one, but they certainly have psychosocial disabilities. They’re at the greatest risk of losing their family, being kicked out, dropping out of school, becoming homeless and becoming further isolated.
The risks for young people with psychosocial disability are massive, that’s when they need lots, and lots of supports and Head Space isn’t going to cut it unfortunately. The NDIA won’t take people in early intervention. My way of thinking early intervention is about prevention. Prevention from things getting worse and that’s not happening. That’s another area we need to sort of lobby and talk about.
QUESTION:
Just to add a brief statement to that our State Government just recently had our election and they’ve promised to have a Royal Commission into mental health. I’m hoping that that will be able to have some kind of positive impact on the way that the NDIA view psychosocial disabilities.
JENNY BRETNALL:
That would be lovely. It’s certainly been raised. We’ve been in constant communication with the mental health team for the NDIA, which is only a very small team for all of Australia. It’s just really really hard to get the message out there.
They’re meant to be trialling new pathways. We will see if that actually happens because a lot of the issues and problems that we’ve been coming up against are the same from three, four years ago. Right down to real basic ones of if someone rings you up tell them that you want to meet in person for a plan don’t do it over the phone and we’ve been guaranteed that that’s not happening but it still does. We’ll see.
As far as the Royal Commission goes that is fantastic that they’re doing that. It depends upon the scope of the Royal Commission and it also depends upon the role of people with lived experience of mental health, the consumer how much of a role they play. If you only have people like psychiatrists or Doctors or service providers saying what they think it’s totally disregarding the person and their experiences and what they need.
We’ve got our fingers crossed that consumers and carers will be absolutely included in that Royal Commission for it to be a true Royal Commission to really really get to the guts of it. That’s what we need.
MELISSA HALE, DARU:
Melissa Hale from Daru here, I’ve got two questions really. In terms of the terminology when does someone having a mental illness become a psychosocial disability and the second question is the NDIS recently announced they were going to do changing of reviewing psychosocial disability in the NDIA, can you tell us a little more about that?
JENNY BRETNALL:
Hopefully. First of all a mental illness is sort of like a diagnosis. The psychosocial disability is the way that it affects a person in their life. I will give you an example of two cartoon things I’ve drawn like Ben and Jerry. They’ve both been diagnosed with post-traumatic stress, anxiety, depression. One will get the NDIS one won’t.
You look at Ben even though he has the diagnosis he might be doing okay he might be going to a course might be doing this and might be doing that whereas Jerry mightn’t be getting out of bed. Jerry won’t open his mail, he won’t leave the house. You can have the same diagnosis but it can affect people in very very different ways. The psychosocial disability is a psychological and social impacts of the mental illness. Does that explain that?
MELISSA HALE:
Clear as mud.
JENNY BRETNALL:
I’m not really sure what’s happening, I know that the Government has extended, the State Government, has extended funding for some services to remain open for those who aren’t eligible for the NDIS, which is wonderful. They are looking at trialling new pathways and they have been trialling new pathways before.
There is one that really concerns me and I don’t know enough about it yet, it would be interesting to hear if any of you have heard about it. I think it’s in New South Wales and it could be Hunter Valley but I might be very very mistaken. What they’re doing is actually, you know how they’ve gone into partnership with different LACs they’ve now gone into partnership on a trial basis with an organisation that’s doing the functional assessment for a person, which really really scares me that they can do that.
Even though it’s a trial, that evidence or that assessment can be actually used now in their eligibility. That’s a big worry what’s going on. It’s really about watching this space. There is some money out there so let’s see what they do with it.
MELISSA HALE:
Does anyone else have any questions?
JENNY BRETNALL:
Have you experienced dollar plans, any of you know about dollar plans – a couple. When I’m talking about dollar plans, I’m talking about people who have actually been made eligible. They’ve gone through the process, they might have come from a defined program or they might have just gone through.
They get to their planning meeting and it’s deemed that they don’t really actually need anything so they’re giving a dollar plan so they’re kept open on the books which is pretty bad, very very bad. We were coming across things like that. The removal of support coordination, that’s massive.
The NDIA themselves are saying they’ve got so many dollars left because people didn’t actually utilise what was in their plans and it’s because people weren’t used to the NDIS and how to navigate their way and yet they’re removing support coordinators. It doesn’t make sense.
The other thing that’s happening within the psychosocial realm is that because it’s become businesses as opposed to community supports, a lot of them are actually closing down because it’s too costly to actually provide a support for psychosocial disability. They’re closing their doors and a lot of people are losing their jobs.
Not only that there’s not a lot out there for people. If they actually do get money to tap into services then a lot of them are actually relying heavily on support coordination so when that’s removed pretty much entirely and dumped with the LACs there will be less services available.
- Author:
- DARU
- Date published:
- Tue 27th Nov, 2018