NDIS, My Way and Families Daring to hope again?

1. NDIS, My Way and Families Daring to hope again? (on living at the intersection of despair and hope)

2. Discussion points Overarching concepts, values, principles of NDIS are spot on and endorsed Opportunities and potential of NDIS for mental health are very exciting, and spread far beyond the scheme itself (but so do some of the potential unintended negative consequences) Two lived experience scenarios to illustrate centrality of family (of origin or choice), other supporters and the community that are unique to mental health Design limitations and challenges – key points of departure Implementation challenges and opportunities – key points of departure

3. NDIS is a Good Thing • Move from provider-centric block funding model to individual budgets with self-directed supports is a long-awaited and welcome shift for families with a loved one who falls into this ‘permanent or likely to be permanent’ so-called psycho-social disability category of support.. Theresa Williams’ Churchill report from 2012 on ‘self directed support for people with a mental illness’ (p4) concludes: • Can result in powerful changes • But need access to services providing brokerage and information • Plus providers delivering personalised, recovery-oriented services, including ‘enablers’ that support change as part of a systematic, sustained approach to transforming service

4. More reasons NDIS is a Good Thing • Enormous alignment between person-centred, social role valorisation and inclusion work of Wolfensberger, O’Brien, Kendrick, Duffy etc underpinning the NDIS for what makes a Good Life and the most common definition (Bill Anthony’s) of personal recovery (satisfying, hopeful and contributing life) – choice and control is key. • All recovery research around the world identify characteristics congruent with NDIS – choice, opportunity, self-determination, etc (except for hope, a cornerstone concept – we’ll come to that) • Enormous need for extra support in mental health – we know the lack of parity of funding with ‘burden of disease’ and how fragmented and discredited the mental health ‘system’ is.

5. Other Good Things about the NDIS • Potential to enable the seismic shift in the current sector and societal/community capacity to support and engage with people in distress extends far beyond the scheme – gap between research and implementation and grip biological psychiatry has on the discourse within mental health can be challenged – the impetus for the ‘enablers’ Theresa Williams talks about – such as: • The opportunity NDIS/My way brings to drop mythical concepts like diagnosis, ‘anasognosia’, ‘won’t engage’, ‘treatment-resistant’, ‘complex’ and dangerous. • The opportunity to be ‘disruptive innovators’, working at the crossroads of ‘love and outrage’, as Pat Deegan, lived experience recovery pioneer puts it • Role of peers and trauma • Opportunity to address risk not as a risk management exercise but co-produced safety plans • Challenges – we’re only just starting the learning around recovery and every moment is unknown – Open Dialogue – be comfortable living with uncertainty (and love) rather than the pseudo-certainty that comes with the pathologising biomedical reductionist approach

6. NDIS – a Good Thing for families …carers of IB holders had significantly higher quality of life, were significantly more likely to be fully occupied in activities of their choice…..

7. Lived experience Scenario 1The loss of a good life – financial Lost income for two people Lost superannuation for two people Costs of hospitalisation and meds and psychiatrists Indirect social capital costs Identity as pensioners Flights, purchases related to paranoia etc Psychologists, nutritionist, gp etc ACOSS report (households receiving Carer Payment biggest poverty gap – ie, below poverty line) Threat to housing, future credit ‘worthiness’, family relationships and social inclusion

8. Family income and expenditure

9. Financial domain "People with mental health problems are more likely than the general population to be unemployed, rely on complex benefits and need advice and support with financial management. Mainstream advice services are less effective at reaching disabled and chronically sick people and informal services may not have the necessary training and support to provide the advice needed…" (Improving financial inclusion and access to money advice. Louise Dobbie and Morag Gillespie, Scottish Poverty Information Unit September 2009) financial inclusion project Glasgow project on financial inclusion – having resources to deal with life problems makes all the difference – we needed plumber, electrician, mechanic, diy person, financial advisor/triage, income! – Centrelink manager (our experience) – clinical staff negotiator, active, useful people.

10. Why linger on poverty? Impact of Rhianwen’s ‘Kmart consumer’ identity and psychiatrists who pretend to be English

11. Still lingering on poverty… • Poverty is anti-recovery • Poverty is like being punched in the face over and over - it’s traumatising, paralysing, isolating, injurious • “Resilience depends on access to, interaction with, and availability of, resources” “To investigate programs for building resilience in children and families living with mental illness: Canada, USA, and Netherlands” Kim Foster, Churchill Fellowship Report, 2011 • “There’s stress, and then there’s Stress with a capital “S.” The former can be considered a manageable if unpleasant part of life; in the right amount, it may even strengthen one’s mettle. The latter kills. What’s the difference? Scientists have settled on an oddly subjective explanation: the more helpless one feels when facing a given stressor, they argue, the more toxic that stressor’s effects.” The Status Syndrome • If we actually ask people likely to be eligible for NDIS (eg, Vera Morgan’s SHIP survey), they identify loneliness and poverty as their main challenges

12. Still lingering on… • The experience of poverty lowers IQ by 13 points • About the same gap as a chronic alcoholic, or someone who has pulled an all-nighter • All the data shows it isn't about poor people, it’s about people who happen to be in poverty. All the data suggests it is not the person, it's the context they’re inhabiting.” (Wilkinson) • “It is the psychological experience of inequality - how much control you have over your life and the opportunities you have for full social participation-that has a profound effect on your health. Being poor, feeling poor and being made to feel poor - stress is a determinant of health” (Wilkinson) • The effects of inequality – a two stage process: • Adult experience of inequality • Passed on to children – epigenetics?

13. Still lingering…. Science 30 August 2013: Vol. 341 no. 6149 pp. 976-980 DOI: 10.1126/science.1238041 • Research Article Poverty Impedes Cognitive Function + Author Affiliations • 1Department of Economics, University of Warwick, Coventry CV4 7AL, UK. • 2Department of Economics, Harvard University, Cambridge, MA 02138, USA. • 3Department of Psychology and Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, NJ 08540, USA. • 4Department of Psychology and Institute for Resources, Environment and Sustainability, University of British Columbia, Vancouver, British Columbia V6T 1Z4, Canada. We suggest that this is because poverty-related concerns consume mental resources, leaving less for other tasks. These data provide a previously unexamined perspective and help explain a spectrum of behaviors among the poor. We discuss some implications for poverty policy. Poor people use less preventive health care, do not stick to drug regimens, are tardier and less likely to keep appointments, are less productive workers, less attentive parents, and worse managers of their finances. "The question we therefore wanted to address is, is that a cause of poverty or a consequence of poverty?“

14. So to what extent are we talking about a mental illness within a person – and to what extent are we talking about their environment – and what are the implications for the NDIS? In other words, whose capacity will we be building? When it comes to mental health, the research shows the emphasis flips from individuals to society in relation to the term ‘disability’ Still lingering…. • This notion is reinforced by all the mental health recover experts – Mike Slade: • Once the scale of the challenge to truly move from practice as usual to recovery is grasped, new issues emerge – • should mental health workers spend all their time treating individuals or becoming agents of social change? • Is a recovery oriented mental health service compatible with socio-political expectations that they will manage risk and provide social control? • Can we develop recovery based services when stigma and discrimination are rife in services and society? • Can we move into rbs until public mental health publicly acknowledges the harm it has caused? • Does the very existence of a mental health system inhibit the development of a socially inclusive society, by reinforcing a distinction between people with and without mental illness? • Barbara Gatter’s report on the sector also echoed this caution • Rachel Perkins, Pat Deegan, etc all echo this required external environment change

15. NDIS and poverty…. We are already seeing ‘mental’ health as defined by psychiatry – first as psychiatric diagnosis, then ‘psycho-social’. This is obscuring the voice of lived experience and framing the design according to preconceived ideas of what – and who - the ‘problem is’ What constitutes ‘reasonable and necessary supports’? Maslow was a bloke. How do family figure into this? What if actually, the very things that are excluded in the design (income replacement, day to day living etc) are the very things individuals and families need? The design of the NDIS by the disability sector, which has a reasonably mature intrastructure and machinery to support non-mental health disabilities, may not have adequately addressed this critical issue.

16. Housing….a real home?

17. Implementation challenges Need for a poverty-literate workforce, ideally poverty peers and trauma peers Need to include families (including children) in support services – how do we do this if individuals don’t want them involved, or drop out of scheme? Housing, ‘reasonable and necessary supports’ challenge

18. Social domain – family experiences and consequences for the NDIS Community inclusion is threatened for families as well - neighbours received letter – stigma associated with schizophrenia and social distance – Isolation from family and community but also power of it – neighbours – three British mothers did the rounds and supported us. The trauma of community rejection is only something we can guess at as most of us don’t experience it. This lack of a ‘placeholder’ in our identity as belonging and mattering is only just beginning to be understood Loss of social capital – borrowing things, acts of good will and someone to call on when things go bad Left job and social networks

19. Emotional domain Trauma, violence, abuse, effect on children, broken relationships etc Shame, guilt, lies, anxiety, depression Feeling of being separate – the social is the emotional Near universal experience for family carers – most depressed, most anxious

20. Role of family in NDIS 1 • Dublin Declaration • Importance of families defined in terms of: • Role (ie, as service providers, partners in ‘care’, choices about supporting loved one or not…without guilt) • Need (ie, strongly impacted by experience of having a family member with extreme and enduring distress so need to be supported in their own mental and physical health – and recover from trauma formally recognised) • Open Dialogue • 80 % recovery rate – role of family is essence of success

21. But how to involve families? They must not be mini-me clinicians (eg, this theory of anosognosia – lack of ‘insight’ that justifies forcing treatment or somehow easing the assessment process through family involvement in assessment) Anosognosia is a neurological condition in patients with nondominant parietal lobe lesions, who deny their partial paralysis. • No such lesions have been found in schizophrenia, despite over 200 years of research looking for them. Other than justifying outpatient commitment, this theory has led to no breakthroughs in treatment. • Do not explain how so many people with schizophrenia gain insight and recover over time; • Do not take into account the power of stigma, which persons with mental illnesses identify as the major barrier to accessing care; biological explanations for the ‘cause’ of ‘mental illness’ have repeatedly been shown to increase, rather than reduce stigma and social distance effects for people with an assignation of the label of ‘schizophrenia’ • Threaten family relationships, ultimately lead to less likelihood of ‘engaging’

22. Families Recovering Together

23. Scenario 2 – what will happen to our loved one when I’m gone? ‘Rachel’, a person in my area I’m supporting through a microboard – very obese, incontinent, toothless, with a cigarette addiction with associated cigarette seeking behaviours, in and out of our local psych ward, with a guardian and public trustee. Handballed between services who have done everything they can to disengage from her. Her mother died nearly ten years ago and since then she’s slowly become more and more distressed and isolated. She’s one of the lucky ones – she inherited her home, although is very close to losing it. We know that having a good life means support to have a real home, real job, real relationships – and community inclusion. Here’s a snippet from facebook community chat page from last week that will give you an idea of the challenge and stigma people like ‘Rachel’ and their families face.

24. Where is the disability located for mental health? • “Anyone that has dealings with a woman in xxxx that is known to cause problems i have been advised ti call xxxxx’soffice (local mp)and make complaints she is impacting small business in the area and i have been asked by local businesses to lodge a complaint each time so something can be done.” • “she steals harrases customers to give her money gets in peoples car and refuses to get out, lies in middle of rd sometimes naked and thats just the start its really sad but round here everyone is fed up its driving customers away if they see her hanging around as they dont want to deal with ger” • “Yes, It does sounds like she would have a few mental issues. But they need to protect her from her self (and from others). I'm surprised she has not been committed.” • “I don't think there's much anyone can do by the sounds of it, she's mentally deficient enough not to understand appropriate behaviour but smart enough to be manipulative. I'm not sure there's anywhere long term for her to go, she's not an acute case, not likely to get "better" and generally not dangerous, just really, really annoying!”

25. A good life……? “She has a well documented psychiatric condition. Is on medication and is watched by after-care services. If you have dealt with psych clients, she can be "scarey" - hence police being called. As xxxxx advises call xxx’s office and they can help for her when needed and give locals a break. Sad, but because of the "do-gooders" in the world, people like xxxx are no longer institutionalized. People compained to have hospitals shut down and people with chronic psych issues were pushed into the community. Nobody really won. And you bet the do-gooders didnt want to be living next door to them. And yes, I did 10 yrs + psych nursing. Rant over! Ring xxxx if he has offered that!”

26. …and this is a middle class, supportive, connected community • “I'm not sure the best course to be honest. She's a sad case but seriously not that bad. Most suburbs have way more crazies, guess in xxxxxx we should be happy we only have the one.” “Glad Your Understanding xxxxx..You would have to be the Most Positive and Caring Post Put Up Here Today” • You can't help people that don't want to be helped. I'm not even sure if she'd be aware she needs help; as long as she can fleece ten bucks off someone on a daily basis she's probably Ok on that level. I have been told she may have issues with drugs or alcohol but I'd say she also has a degree of mental deficiency, so in a way she doesn't necessarily have a mental illness, she's just not quite all there. There isn't anywhere for the 'partially deficient but able to function on a basic level with no hope of improvement' to go in our society.

27. ….social inclusion… • I stopped for her once she told me she was walking up to xxxx to get cat food and milk , I didn't let her in my car but went and got her cat food and milk . Told her to wait there and I would take it back to her ( she was laying in the road when I saw her about 9pm ) when I got back the police and ambulance were there and she was telling them she was waiting for sometime to come back with the cat food and they were telling her she was a liar .. I sheepishly handed over the cat food and milk . I just feel sorry for her • Awwwwwww Its Sad..andshe needs Help to be out of Community..I think Ppl that have been involved to supposedly get in Contact with are Not Doing enough ..Like saying just keep Complaining and Get In Touch with XXXX..And Nothing has been Done ..That lady Is Seriously Sick ..Someone needs to Put there Hand Up and Get that Lady Some Help !!

28. Connection, contribution, citizenship? • I would like her to try that on me, Id punch her bloomin lights out. One reason why I constantly keep my door locked at all times • Crazy xxxx at it again

29. What does this mean for services and the NDIS – a new mental health paradigm

30. The new world order…… Fundamental paradigm shift #1: The chronicity and disability associated with extreme emotional distress is a consequence not of some inherent random disease visitation or chemical imbalance, but of deficits within the external environment and in the space between people Fundamental paradigm shift # 2: Although family members cannot recover for each other, we can recover with each other.

31. The really BIG implementation challenges The BIG thought – even people ‘too complex’ or too afraid or too comfortable can change through exposure to other possibilities and deliberate human attention The BIG Thought – the value of natural supports is a basic principle but a supportive community can take years to build. Perhaps the development of community needs to become a larger part of recovery practice The BIG Thought: even though we preach inclusion, our organizations do little to actively counter the decline of community spirit, and provide services that further isolate all of us. (Club 21)

32. Design limitations and challenges “Nothing about us without us” Irony of this creed being violated in relation to mental health by the very sector that coined the phrase is not lost, despite repeated and early lobbying by many people for inclusion. • Mental Health Specific Strategies • ‘Tapping into the expertise of those with a lived experience may be particularly helpful in providing supports for people with a mental illness who wish to take up personal budgets.’ Theresa Williams, p52

33. Design process flaw - consequences • Delay in inclusion for people with mh issues (the ones with the least existing support) • Lack of clarity regarding numbers eligible, funding for tier 2, eligibility criteria, assessment process, reasonable and necessary supports etc • Lack of awareness and engagement with sector - individuals and families largely unaware of relevance to NDIS and their lives • This is not an inherently enticing proposition for people experiencing extreme distress (especially the ‘abandon hope’ connotations of permanency). It’s premised on willingness to engage, and we need to think enticement not engagement when it comes to mental health. • My husband thought he was going to be killed that day/night – why would he bother ‘recovering’ or going to an appointment with a stranger who probably was part of the scheme to kill him?

34. How to redress these issues? • Retrofitting NDIS – mental health is a different construct fundamentally, with many key points of departure, both in terms of the nature of the inherent distress/inability to live a good life of people and the external environment – both immediate sector (don’t have pathways/LAC’s some workforce capacity already) and wider society • Engaging with individuals and families – still no structures and processes for lived experience engagement in working groups – on its way, three years after expert working groups first convened • Given the architects of the existing models of failure for mental health (bureaucrats and service providers) are still in charge of the NDIS with no hint yet of putting individuals and their families at the centre of the design and implementation of services’, families are understandably living at that intersection of despair and hope

35. Redressing design flaws • Addressing and nurturing recovery within NDIS design – even more fragile than NDIS itself – if NDIS is a premature baby, recovery is an embryo, still not really believed or understood • Addressing issues of eligibility, assessment and engagement for people with lived experience of extreme and enduring distress • Addressing and redressing flaws in design regarding role and needs of families in mental health

36. Implementation challenge - working with families • Need to ensure capacity building of families to protect families who’ve usually lived at intersection of love and outrage, despair and hope, for years – often conditioned by language of medical system that has dominated mh to embrace notions like anosognosia, ‘caring’, treatment compliant, ‘won’t engage’ etc – need to work with families is critical, particularly when entering a scheme whose criteria of permanency is so threatening to recovery at a profoundly fundamental level – it’s one thing to be permanently impaired functionally, it’s another thing when it’s your essence of being, your identity, your soul, your reality to be declared invalid, especially when it’s your family in agreement • How to help families adapt a hopeful stance whilst living with both ambiguous loss, disenfranchised grief and often anticipatory grief – how to help them let go without giving up, understanding trauma, distress, terror of taking risks, of uncertain environments • How to skill up the workforce to understand eligibility – paranoid vs paralysed – and reasonable and necessary supports

37. Workforce capacity building area – understanding where families ‘are coming from’ Many families stuck between mental health system and drug and alcohol sector Transition to community support sector – fit-for-purpose workforce only just starting to be built Transition of dominant legacy biomedical worldview and associated tensions – need to educate and support families to become families in recovery Many families so focused on needs of loved ones will need skilled support to identify their own needs. Decision fatigue – make many decisions, micro decisions others don’t think about, and decisions according to criteria other people don’t share, in an ever-changing unknown environment akin to a war-zone – need to be supported

38. Working with families • Theresa Williams’ fundamental conclusion – “need for brokerage, advice, information”…..like….. • how to empower individuals but shepherd and safeguard, how to use dignity of risk, how to find out what a good life looks like, what a good worker looks like, what a good service looks like, the difference between person-centredness and self-direction… • How to negotiate Centrelink, hire cleaners, home maintenance people, how to reduce medications, how to manage debt, housing, how to talk with people about mental health, how to engage with the assessment process, how to negotiate our own recovery – how to regain employment, how to manage the process of reconnecting with community, understand trauma grief and a hopeful stance – letting go without giving up – how to recover together, learn how to have fun, how to learn to live again without a broken heart, how to navigate mental health and drug and alcohol sectors, negotiate criminal justice system (‘Rachel’s’ experience), how to work with clinical services still in limbo land between research and practice implications – and in case of mental health – practitioners still strongly attached to an identity as either scientist saviour or doctor-omniscient expert.

39. Some final points… • Existing carer supports – continuity of care issue and consequences of families who may sit in tier 2 • Nothing more fundamental a factor in people’s bottoms of their worlds falling out and recovery than the absence and presence of love. • Address risk not as a risk management exercise but co-produced family inclusive safety plan • None of this is easy – we’re only just starting the learning around recovery and every moment is unknown – Open Dialogue – be comfortable living with uncertainty • Need to become better at understanding the role of medications and shared decision making in relation to their use and, if desired, reduction/elimination (evidence that long term recovery outcomes are worse, and reduced physical health status/life expectancy).

40. For many families this is our reality….. “Just because everything is different doesn’t mean anything has changed” (Irene Peter) “Many people think they are thinking when they are merely just rearranging their prejudices” (William James)