Building 1/22 Aintree Street Brunswick East VIC 3057 Tel: Web: VMIAC 20141

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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web:

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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web:

VMIAC Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: Cartoon by Merinda Epstein

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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: Issues with Recovery & Permanent Impairment

VMIAC Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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

VMIAC Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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 Building 1, 22 Aintree StreetTel: Brunswick East VIC 3057Web: 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’.