Building 1/22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
1. Who we are
2. Recovery in a culture of permanent impairment
3. Consumer communities & alternative frameworks for
our experiences
4. Raising consumer voices in Geelong
(what are consumers saying & what have we learnt?)
5. What the NDIS means for advocacy from the consumer
perspective
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
• Peak consumer organisation in Victoria
• Run by and for people who have a lived
experience of mental health issues or
emotional distress
• Committed to active consumer participation
at all levels of mental health system and
reforms
• Philosophy of equity, social justice and
change to benefit all consumers
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Cartoon by
Merinda Epstein
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Issues with Recovery & Permanent Impairment
• The language damages, rather than builds hope
• It doesn’t reflect current thinking or best practice.
• It contradicts the evidence of recovery based
practice.
• Creates potential barriers to access and service
entry.
• Does not reflect the NDIS central pillar of choice
and control, according to consumer perspective
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
National Framework for Recovery-Oriented
Mental Health Services
Domain 1: Promoting a culture and language of
hope and optimism is the overarching domain and
is integral to the other domains.
“…recovery-oriented mental health service
communicates positive expectations,
promotes hope and optimism…”
Australian Health Ministers Advisory Council, 2013
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Examples of alternative consumer-led
frameworks:
• Hearing voices approach
• The Icarus project
• Intentional peer support
Some consumer groups in Geelong are ‘breaking away’
from services (SIMMA, Hearing Voices group). People
have voiced concerns the NDIS will compromise the
integrity of consumer philosophies, ethos & work.
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
National Disability Insurance Scheme (NDIS)
noun 1. Everyone except us it seems. 2. We
won’t get anything till last and then it’ll be a
competition to prove we are more disabled than
someone else. I feel an unease coming on. 3.
Schizophrenia And Nothing Else – again.
MadQuarry Dictionary, Our Consumer Place
http://www.ourconsumerplace.com.au/consumer/index
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Raising consumers’ voices: What are people saying?
Problems with language use:
- Different to what we’ve fought for in mental health
- ‘Permanent’, ‘impairment’, ‘disability’, ‘functioning’ can feel demeaning & offensive
- Feels like language puts all accountability on consumers instead of NDIA
(eg., ‘consumers have chosen to opt out’ if they are late, etc.)
Systems & Processes:
- Supports not allowing for episodic experiences or crisis needs
- Supports locked in until next review – not flexible, ‘can’t change my mind’
- Accessibility issues - lost paperwork, long delays, ‘no-one has gotten back to me’
- Most people who need to appeal are getting approved. But some consumers report
the appeals process is harmful to mental health.
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Raising consumers’ voices: What are people saying?
Feeling Disempowered & Coerced:
- Pressure in planning meetings to ‘make choices’
- Some have said the process made them ‘feel stupid’ or ‘worthless’
Unintended Harm:
- New processes are reinforcing clinical rather than community paradigms
- Support work role has been interrupted during transition while workers assist with
phasing consumers over
- Consumers reporting concern for support staff, ‘my issues are making my worker
sick’. Consequence is that some consumers are intentionally not disclosing
issues/distress to their workers
- Anecdotal reports of some hospitalisations and suicide attempts as a response to
not being eligible. Feelings of rejection. Is anyone recording these impacts?
- Lateral violence amongst consumer communities: consumers competing over who is
‘worthy of having a voice’.
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
Raising consumers’ voices: What are people saying?
Ethical Questions:
- The trial gives real people no choice about being included and no choice about
opting out
- Trial validity & ethical conflict for Victoria given extensions of block funding (we
aren’t seeing the real impacts of excluded people)
- Consumers said they feel excluded from being able to influence how this scheme is
designed
- Consumers reported feeling that the trial and changes were not transparent. People
commented that we ‘only hear good news stories’ about the NDIS.
- Lack of visible or transparent avenues to affect change: ‘we don’t know who’s
responsible for what’, ‘that’s not our job’.
VMIAC 2014
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Building 1, 22 Aintree Street
Brunswick East
VIC 3057
Tel: 03 9380 3900
Email: info@vmiac.org.au
Web: www.vmiac.org.au
The Role of Consumer Advocacy Moving Forward
-
Representing consumer voice. Maintain integrity of consumer principles
Acknowledge historical context of consumer movement and culture; ‘the
last great civil rights movement’
Consumer movement & language owned by consumers; history of being
silenced, co-opted, misappropriated
Recognition of all consumer voices within the broader consumer
perspective; inclusive of polarising views
Opportunity to inform scheme design, systems & processes, best practice
But, sometimes adversarial by necessity in context of human rights, and
by definition
Consumer perspective often challenging existing or outdated paradigms,
not just ‘helping services do the real work’.
VMIAC 2014
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