Both Nathan and Indigo have been actively involved as advocates in the Barwon (VIC) NDIS trial. This presentation represen...
Noted in the presentation: Planes Or Wings? Most slides presented today showed pictures of airplanes being built in the ai...
This cartoon is by revered consumer advocate Merinda Epstein reflects much of the consumer feeling about the NDIS.
There ...
An extract of our online film was shown here. The film is about Victorian experiences of the NDIS trial in Barwon. The ful...
As with any human experience, not all consumers have the same opinions or wants. There is a variety of views about many of...
When we talk about recovery, we often mean different things. When we talk about the impact of the idea of ‘permanent impai...
Read more about Mary O’Hagan: http://www.maryohagan.com
7
The term ’enduring’ is increasingly used in mental health settings. Yet this term, like so many others, can have conflicti...
Does language really matter?
This conversation is about language. To some it may seem superficial or even petty – yet lan...
Got something to say?
A substantial conversation about permanence in the NDIS is occurring right now on Facebook. Check o...
Overview of the 5 key issues with the idea of ‘permanent impairment’. These are explored in more detail in the next sectio...
There are differing and emerging views on psychiatric labels – eg ‘schizophrenia’ vs ‘hearing voices’ vs ‘spiritual emerge...
Nathan &/or Indigo share personal experiences of the harm caused by being told that our ‘mental illness’ was permanent.
•...
poor economic implication as well.
* Many consumer recovery journeys occur outside of clinical services and involuntary p...
13
Read the National Framework for Recovery-Oriented Mental Health Services:
http://www.health.gov.au/internet/main/publishi...
Don’t take us back to the ‘bad old days’
The NDIS needs to move us forward… or what is the point of it?
How can workers ...
The idea of permanence is not used anywhere in mental health services – clinical or community. The NDIS is introducing a c...
An example of the changeable and political nature of mental health diagnoses.
Today no-one would ever consider sexual ori...
Just one year ago, a person could have been diagnosed with schizophrenia based solely on the opinion by a psychiatrist tha...
19
We spoke with some of these consumers in Barwon. Their reasons included feeling offended by what the scheme wanted them to...
If we are seeking to create a system that promotes choice and control, then allowing for people to make sense of their exp...
predict this, however.
21
There seems to be an overwhelming paradigm of ‘NDIS praising’. And there is much that is great about this scheme. But ther...
Some of these options have been discussed as alternative language. But none of them gets it right.
23
This is a trial. There is time to change the legislation and get it right. Let’s do it.
24
25
This framework is driven by medical understandings of our experiences.
And it focuses on ‘maintaining’ our ‘functionality...
This is another way that we could conceptualise what is needed.
27
28
29
30
A substantial conversation about permanence in the NDIS is occurring right now on Facebook. Check out the conversation and...
In other states only some MH services are being included in NDIS, and the community-managed recovery and rehabilitation su...
Overview of the major issues raised by Barwon consumers.
33
Language use is always central to consumers in mental health. Language is used to diagnose us, to stigmatise us, to label ...
There seems to be a fundamental misunderstanding of the purpose and use of goals in mental health support work that is evi...
learning to trust myself, learning coping skills, and much more, that allowed this to happen. It was very skillful work th...
We refer simply to that most powerful and central philosophy: “Nothing about us without us is for us”.
36
37
38
This is far from everything that we need. But it’s an excellent starting point.
39
40
of 44

Nathan Grixti and Indigo Daya - Victorian Mental Illness Awareness Council - CONSUMER PRESENTATION - Raising Consumer Voices & The Barwon Experience

The Integrating Mental Health into the National Disability Insurance Scheme Conference, delivered the latest plans for the integration process. The presentations cross examined the implementation and future direction of disability policy reform, for with Australians suffering from mental illness. Find out more at http://bit.ly/1pdO10c
Published on: Mar 3, 2016
Published in: Health & Medicine      
Source: www.slideshare.net


Transcripts - Nathan Grixti and Indigo Daya - Victorian Mental Illness Awareness Council - CONSUMER PRESENTATION - Raising Consumer Voices & The Barwon Experience

  • 1. Both Nathan and Indigo have been actively involved as advocates in the Barwon (VIC) NDIS trial. This presentation represents what consumers have said about their trial experiences during these advocacy processes. -Given our role as advocates, the presentation focusses on areas for improvement rather than what’s going well. But we certainly acknowledge that many consumers have expressed great satisfaction with the scheme. -Our interest is to increase this satisfaction to those who are missing out. We note that satisfaction scores reported about the scheme do not include those people, who previously had community support, and are found ‘not eligible for the NDIS’. We also acknowledge: -The commitment and willingness of the NDIA to learn and adapt to feedback about the scheme. -That many of the changes asked for in this presentation sit outside of the NDIA and with state or federal governments -The appointment of Eddie Bartnik as Strategic Advisor on the operation of the scheme within mental health 1
  • 2. Noted in the presentation: Planes Or Wings? Most slides presented today showed pictures of airplanes being built in the air. This has been a common metaphor used to explain how the scheme is still being built while it flies live. We proposed an alternative metaphor: that of wings. The image of planes made us wonder how many consumers actually want to get in these airplanes to start with. They all seem to be flying to the same place, somewhat uniform and a bit institutional. We suggested that what many consumers actually want is support to build or stretch their own wings, and to fly to their own destination. (Acknowledgment to Ellie Fossey for inspiring this idea). 2
  • 3. This cartoon is by revered consumer advocate Merinda Epstein reflects much of the consumer feeling about the NDIS. There is a historical context to the consumer movement in mental health. It’s not always about impairments, illness and recovery, but about our identities, our freedoms and our voice. Many international consumer leaders refer to mental health as the last great civil rights movement. We have a long history of not being heard, and of our voices and views being pathologised, especially when we try to challenge dominant paradigms. The imagery of loudspeakers in our advocacy work comes from listening to consumers, and what images they wanted us to use. They come from the idea of magnifying our voice until it is truly heard. Consumers have told us that they don’t want to keep seeing ‘happy’ material about us, with flowers and butterflies. In our advocacy work we have tried very hard to stay true to these messages. 3
  • 4. An extract of our online film was shown here. The film is about Victorian experiences of the NDIS trial in Barwon. The full film can be seen here: https://www.youtube.com/watch?v=qjaxfFxux5w 4
  • 5. As with any human experience, not all consumers have the same opinions or wants. There is a variety of views about many of these issues. Our aim in the presentation has been to be true to different perspectives, and to ensure that each viewpoint is heard. 5
  • 6. When we talk about recovery, we often mean different things. When we talk about the impact of the idea of ‘permanent impairment’ in relation to recovery, we acknowledge that many people have different ideas about what we mean by recovery. This slide outlines 3 recovery domains. Some people relate to just one of the domains, others relate to a holistic view which includes all three. In the context of this presentation we believe all 3 domains may be affected – but it is the domain of personal recovery, specifically hope and empowerment, that may be most harmed by the idea of permanence. Many people still think in terms of clinical recovery, even consumers. In the midst of distress we want the ‘magical cure’, the quick fix. But for the vast majority of people, such a thing does not exist and most likely it never will. 6
  • 7. Read more about Mary O’Hagan: http://www.maryohagan.com 7
  • 8. The term ’enduring’ is increasingly used in mental health settings. Yet this term, like so many others, can have conflicting meanings. For some, particularly those with a recovery orientation, it relates to past experience: ‘my distress has been enduring over many years. But it may not always be this way.’ For others, it is considered almost synonymous with ‘permanence’, ie., it is seen as a prognostic term. Read more about Will Hall: http://willhall.net/ 8
  • 9. Does language really matter? This conversation is about language. To some it may seem superficial or even petty – yet language shapes our personal and shared meanings. Recovery depends to a large extent on how we see ourselves, on how we makes sense of our experiences, and on how we interact with others around us. All of these things are mediated by language. So, yes, it matters a great deal. I don’t agree… I am offended… Language use within both mental health and the broader disability fields is often hotly debated. We acknowledge that there is great variation in opinion about many of these matters. We also wish to acknowledge: In arguing against the idea of ‘permanent impairment’ or ‘permanent disability’ within mental health, the argument is not about making judgments about impairments or disability. The speakers both heartily acknowledge the great value of people with all manner of experiences and abilities to the rich diversity of our world. The argument is about its applicability, veracity and impact within this context. At base, the argument is about facts, harm and usefulness. 9
  • 10. Got something to say? A substantial conversation about permanence in the NDIS is occurring right now on Facebook. Check out the conversation and add your views: https://www.facebook.com/indigo.daya/posts/10204940466492858 An analysis of the conversation and the diverse issues raised will be released in coming weeks by MI Fellowship. Keep an eye on our Facebook page for news: www.facebook.com/MIFellowshipVictoria 9
  • 11. Overview of the 5 key issues with the idea of ‘permanent impairment’. These are explored in more detail in the next section. 10
  • 12. There are differing and emerging views on psychiatric labels – eg ‘schizophrenia’ vs ‘hearing voices’ vs ‘spiritual emergence’; who holds the authority? Consumers want to make their own decisions about their own identity and experiences. The language, particularly the term ‘permanent’, is reminiscent for many consumers of clinical views & involuntary treatment taking precedence over our own beliefs and knowledge about ourselves There is a conflict between the objectivity of diagnosis and the subjectivity of personal experience. 11
  • 13. Nathan &/or Indigo share personal experiences of the harm caused by being told that our ‘mental illness’ was permanent. •We were both told that we would not recover, that we had illnesses that were permanent. •For both of us, this had devastating impacts. •We had to recover, not only from our difficult experiences, but also from the labels and lack of hope. •Each of us is still, from a clinical perspective, ‘symptomatic’. We could be considered to have delusions, hallucinations, to lack insight and more. •Yet we both view our experiences as strengths, not as impairments. As just a part of ourselves, not as an illness. •We each feel, that had services used the kind of language that we are seeing emerge in the scheme, that our recovery journeys would have been MORE difficult, not easier. •Indigo shared that, during her time as a consumer, it cost governments many hundreds of thousands of dollars to provide support and services. Now she pays tax instead. Hope and access to consumer-led ways of thinking were critical for this change. This change in language does not just have a human impact – but it has a 12
  • 14. poor economic implication as well. * Many consumer recovery journeys occur outside of clinical services and involuntary paradigms. They are led by peers, and different ways of thinking. New service systems must reflect this. * We have learnt – and in many cases are still learning – about the harms caused by adversarial relationships within mental health. Why would we knowingly set up another? 12
  • 15. 13
  • 16. Read the National Framework for Recovery-Oriented Mental Health Services: http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-n- recovfra Some may argue that the NDIS is not a mental health service – that it just becomes the eligibility screening, funding and entrance point for these services. But if the front door doesn’t work, there is not point in having the rest of the house. The initial eligibility for the NDIS must support rather than contradict the overarching domain of recovery-oriented practice. 14
  • 17. Don’t take us back to the ‘bad old days’ The NDIS needs to move us forward… or what is the point of it? How can workers practice hope when, in order to get in the door, we tell people that we don’t really believe in their potential? 15
  • 18. The idea of permanence is not used anywhere in mental health services – clinical or community. The NDIS is introducing a concept that is not based on any type of actual practice or evidence. It introduces and formalises ‘guess-making’. Our diagnoses often change over time. We tend to accumulate more labels the longer we are in services. There are no objective tests or methods for determining mental health diagnoses. We must always remember that mental health diagnoses are based on subjective processes – observation, opinion and what we as consumers choose to share. Mental health is by far the most subjective and changeable type of experience included in the NDIS. 16
  • 19. An example of the changeable and political nature of mental health diagnoses. Today no-one would ever consider sexual orientation to be an illness, yet once it once considered to be so. Which diagnoses that we rely on, and consider permanent today, will fall into this category in the future? What will this mean for the people who are given these labels, along with a message of permanence? 17
  • 20. Just one year ago, a person could have been diagnosed with schizophrenia based solely on the opinion by a psychiatrist that their thinking fell into the category of ‘bizarre delusions’. In the current NDIS framework, this person may have been told that they had a permanent impairment. Today, if unusual thinking was the only observable ‘symptom’, this person could not even be diagnosed with schizophrenia. The APA has openly acknowledged that this type of diagnostic process is inherently subjective. 18
  • 21. 19
  • 22. We spoke with some of these consumers in Barwon. Their reasons included feeling offended by what the scheme wanted them to say about themselves. They did not agree with ‘permanence’, did not see that a scheme that used this type of language could be helpful for them, and wanted no part of it. Yet these people needed support services. They fit the criteria of people targeted by the scheme. The language creates barriers to access in a system which is trying its hardest to remove barriers. In Victoria this is particularly problematic since current plans are for the NDIS to subsume ALL community mental health services. 20
  • 23. If we are seeking to create a system that promotes choice and control, then allowing for people to make sense of their experience in their own way is crucial. We have heard from a few consumers, and a slightly larger and very passionate group of carers, a strong sense of alarm about us raising these issues. The fear seems to be that many people fought hard to get mental health included in the NDIS, and that critiquing it at this stage could risk it for everyone else, particularly for those people who have genuinely needed lifelong support. We see this as an indication of the gaps that already exist in our service system for people with complex, long-standing and unmet support needs. Our view is that a strong scheme should embrace constructive critique – particularly while it’s in trial stage. Decision makers around the scheme may need to give some assurance to this group that they welcome critical conversations. We also acknowledge that while everyone can recover, in practice not everyone will. Recovery depends on many factors, including access to good quality services and supports. Not everyone has this. This means that while permanence is not applicable in a general sense, it may well be the case for some individuals. There is no way to 21
  • 24. predict this, however. 21
  • 25. There seems to be an overwhelming paradigm of ‘NDIS praising’. And there is much that is great about this scheme. But there is also a fear of critiquing the scheme in case we lose everything, and a lack of transparent public reporting on issues. This sets up the potential for conflict between people who already have enough to deal with. Many consumers and carers are fearful about the repercussions of criticising the scheme – both personal and systemic impacts. We urge the NDIA to welcome and encourage more debate, and to publically share negative impacts and issues as well as the positive. We understanding marketing drivers to ‘brand the scheme as positive’. However, many consumers (not just in mental health) will greatly value brands that are associated with a willingness to embrace critique, to continually learn and to run these processes in rigorously transparent ways. 22
  • 26. Some of these options have been discussed as alternative language. But none of them gets it right. 23
  • 27. This is a trial. There is time to change the legislation and get it right. Let’s do it. 24
  • 28. 25
  • 29. This framework is driven by medical understandings of our experiences. And it focuses on ‘maintaining’ our ‘functionality’ in the outer world rather than supporting us to change and grow in our inner lives. It is imperative to remember that mental health is located in our inner lives, not in our external functioning. If supports focus only on our functioning, then we remove the potential to change and recover. 26
  • 30. This is another way that we could conceptualise what is needed. 27
  • 31. 28
  • 32. 29
  • 33. 30
  • 34. A substantial conversation about permanence in the NDIS is occurring right now on Facebook. Check out the conversation and add your views: https://www.facebook.com/indigo.daya/posts/10204940466492858 31
  • 35. In other states only some MH services are being included in NDIS, and the community-managed recovery and rehabilitation support services is being kept as separate to the NDIS funding. In Victoria all services are moving under NDIS – with nothing in place yet for those deemed ineligible. We have a promise of Tier 2 services, but nothing has actually happened. Given our histories in mental health systems, there is little reason for consumers and consumer communities to trust the system that this will work this out. It is difficult to know who’s actually responsible for what. How do we separate the issues to know who the appropriate bodies are to raise issues with? Eg., NDIA state or national, state or federal governments… Report coming soon… We will be issuing a joint report on our findings from consumer consultations before Christmas. Keep an eye on our Facebook page for news: www.facebook.com/MIFellowshipVictoria 32
  • 36. Overview of the major issues raised by Barwon consumers. 33
  • 37. Language use is always central to consumers in mental health. Language is used to diagnose us, to stigmatise us, to label us. Mental health services are just as steeped in human rights issues as they are in health and disability issues. Anecdotally, some services and consumers have found ways to allow for crisis support – but this is not embedded or adequately recognised. 34
  • 38. There seems to be a fundamental misunderstanding of the purpose and use of goals in mental health support work that is evidenced by the NDIS idea of setting goals for the next year in a 1 hour meeting with a complete stranger. It can be almost impossible for some of us to set goals when we first join a service. Our thinking, our self-esteem, our knowledge of what’s possible… these are all impacted by our inner experiences, by the impact of medication or ECT, by stigma, and by experiences of involuntary treatment. Indigo shared her example of joining a community support service about 13 years ago: -When I arrived my goal was to go to an art class and get a cheap lunch. That was it. -It took about 9 months to be able to really articulate my goals (to become a support worker, to use compassion and creativity to make a difference in the world). These goals and the ensuring support got me back to work after years on a pension. -It was the process of working with a support worker over many months that helped me shape these goals and be motivated to act on them. It involved understanding my values, my dreams, finding hope, hearing stories of others, 35
  • 39. learning to trust myself, learning coping skills, and much more, that allowed this to happen. It was very skillful work that changed my life. -If I had stuck with the goal f an art class and a cheap lunch, I may well still be on the pension & in and out of hospital – instead of having a life that I now cherish. -The NDIS process does not seem to recognise at all that setting goals is not what we do at the beginning of our work – it IS the ESSENCE of our work. And the best way to do this is with someone we have learned to trust over an extended period of time. The process of planning for our lives begins with being about to think about even having a future, caring enough about ourselves to be motivated, trusting the person in front of us, being able to concentrate and much more. This process is not really the place of intake – it actually IS the work of recovery- oriented services. 35
  • 40. We refer simply to that most powerful and central philosophy: “Nothing about us without us is for us”. 36
  • 41. 37
  • 42. 38
  • 43. This is far from everything that we need. But it’s an excellent starting point. 39
  • 44. 40

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