NDIS, My Way and Families
Daring to hope again?
(on living at the intersection of despair and hope)
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
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:
o Can result in powerful changes
o But need access to services providing brokerage and information
o Plus providers delivering personalised, recovery-oriented services,
including ‘enablers’ that support change as part of a systematic,
sustained approach to transforming service
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.
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 coproduced 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
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…..
Lived experience Scenario 1
The loss of a good life – financial
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•
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•
•
•
•
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
Family income and expenditure
Financial domain
• 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.
"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
Why linger on poverty?
Impact of Rhianwen’s ‘Kmart consumer’ identity and psychiatrists
who pretend to be English
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
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?
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
1. 1Department of Economics, University of Warwick, Coventry CV4 7AL, UK.
2. 2Department of Economics, Harvard University, Cambridge, MA 02138, USA.
3. 3Department of Psychology and Woodrow Wilson School of Public and International Affairs, Princeton
University, Princeton, NJ 08540, USA.
4. 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?“
Still lingering….
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’
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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 –
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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
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.
Housing….a real home?
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
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
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
Role of family in NDIS
• 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
1
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.
1.
2.
3.
4.
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’
Families Recovering Together
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.
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’s office (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.”
•
•
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“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!”
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!”
…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.
….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..and she 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 !!
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
What does this mean for services and the NDIS – a new
mental health paradigm
Past (Medical)
Present (Maintenance)
Future
(Inter-dependent)
The problem
Person with the condition
Person needs care
Limited or non-existent
opportunities
Core of problem
In the person
In the person’s deficits
In the community
Actions of paradigm
Classify, congregate, treat
Congregate, control, care
Support, connect, empower
Power person
Expert (doctor)
Benevolent Caretakers
Person served
Goal of Paradigm
Fix, change
Hold, prepare for death
Develop relationships
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.
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)
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
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?
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
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
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
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
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 personcentredness 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.
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).
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)
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Carer presentation, Kerry Hawkins