Consumer and NGO Representation and Advocacy for Change Sam Battams Flinders University Mental Health Services Conference 2008

Background Based on PhD research - Case study Mental Health Reform in South Australia 2000-2005: focused on policy level issues in intersectoral collaboration, agenda setting for housing resources, community participation in policy processes. Qualitative research, policy review, interviews, focus groups, participant observation

Methods Stage 1: Review of key national and state mental health, housing (& disability) policies 2000-2005 & thematic analysis 91 participants: 52 professionals in Participant Observation of NGOs & 10 NGOs in Interviews & Focus Group Stage 2: Explore what NGO advocacy groups & State level Consumer/Carer groups have input into & advocated for and progress/challenges. Interviews and focus groups with 7 Consumer & Carer Reps and 2 Professionals working with state level groups Stage 3: Public servants’ perceptions on collaboration & participation & housing, examples of successful collaboration efforts. Interviews (20) X Sectors

Research question Central question: To what extent have community participation mechanisms contributed to the development of policy on housing provision for people with a psychiatric disability? Considered not just the effectiveness of community groups and their influence on policy, access to policy networks/politicians, etc, but also what groups themselves were advocating for and how they or their ‘sector’ defined problems.

SA Context Slow development of NGOs/in SA & commitment to mental health reform Over 2000-2005 – 3 ‘consumer’ groups linked to bureaucracy at a state level Participation ultimately organised through NGOs (Health Consumers Alliance) Peak mental health NGO (Mental Health Coalition of SA) funded in 2004 No specific state-level body where people with psych disability are direct members of a peak NGO mental health body Mental Health body aims to ‘represent NGOs’ and ‘advocate on behalf of people with psych disability’

Key issues – Consumer Groups Instability of MH groups in bureaucracy affected by changes in government & reform processes & changes in key personnel (contrasted with the stability of groups in the housing sector) Expectations that people would ‘do’ policy & report to government –lack of support (education, facilitating input into policy, financial) Much debate about the ‘representativeness’ versus accountability of individuals and NGOs: Arguments regarding the accountability of services often overlooked in these debates e.g. Point 3: Concerns with NGO professionals representing service users - claims that the peak mental health NGO did not represent consumers e.g. Point 4: Control of participation processes (recruitment) – not ‘representation’ of others consumer consultant – deference to professionals who are employing them

Key Issues – Consumer Groups Consumerist ‘discourses’ on participation: People represented as individual ‘health service consumers’ (market, choice) rather than as a population group with interests in social determinants of health Groups subject to professional accountability (e.g. Control of recruitment processes) PROCESSES for participation a major focus across 2000-2005 Participation an ‘end’ in itself rather than a ‘means’ to empowering forms of participation

Key Issues - Consumer groups Group themselves mentioned housing issues – but little opportunity for input into policy included that with ‘other sectors’ Very little advocacy on citizenship/broad rights or input into ‘other sectors’ Lack of intersectoral collaboration at a policy level contributing to the problem National context - Rights redefined across the 3 National Mental Health Plans – rights in 3rd national plan in terms of treatment services rather than broader human rights issues

Key issues NGOs Policy networks in health dominated by private sector (e.g. SRFs) and professional interests; situation influenced by context of undeveloped NGO sector NGOs largely felt excluded from policy networks – housing sector NGOs sometimes involved in networks ‘within sectors’ & lobbied funded sectors Tension between advocacy and service provision role (contracts with government) Political culture seen to discourage advocacy/lobbying Stigma affecting the policy environment (particularly debates over public housing) Larger NGO in policy network where professional groups and ‘medical discourses’ were dominant e.g. ‘separate housing’ in mental health sector

Key Issues NGOs Sometimes groups advocating ‘within sectors’ for the types of services already provided or wished to provide More transparent processes in the housing vs MH (associated with quick release of funds tied to political decision-making) Groups relying upon networks (e.g. through contracts with government), which smaller groups may not have access to –important where less transparent processes Little MH representation in ‘other sectors’ e.g. Little mental health representation in the housing sector or disability sectors (different policy networks) Last point: Inquiry into public housing – in the latter people with mental illness became synonymous with ‘disruptive tenants’ (stigma).

The media I think the biggest influences on the government and its policy is (Talkback radio presenter); it's the media, the media, the media, and then from the media, the public perception of what's going on. Like psychotropic, knife-stabbing schizophrenic; the media, the media, the media, the portrayal in the media. .…People ring the radio to have a bitch and away you go. And the politicians listen, that's all tracked apparently and documented. Consumer representative

Conclusions Cross sectoral NGO networks outside of government contracting arrangements Cross sectoral accountability mechanisms and measures (e.g. housing stability of mental health service users) – depend on whole of government approaches An avenue for ensuring that people with a psych disability have input into contributing to social determinants of health Challenging consumerist and medical discourses which inhibit participation on a broad range of issues NGO/professional support for representation in ‘other sectors’ (housing, disability) Addressing stigma (media) Addressing stigma by: Focusing on the issues (inequitable access to housing) rather than the conditions/illness Using media to challenge stigma in public debates on issues such as housing: local stigma watch campaigns Contact with the subject of discrimination successful in addressing stigma – involvement of service users or people living within successful supported housing projects in public forums