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The Self Advocacy Resource Unit’s submission to the Royal Commission into
Violence, Abuse, Neglect and Exploitation of People with Disability
Self Advocacy Statement of Recognition
‘We recognise the members ofSelf Advocacy Groups who have worked tirelessly over many years for the right to live in the community and for equality and human rights for all.’
Every meeting and event facilitated by the Victorian Self Advocacy Resource Unit (SARU) begins with an Acknowledgement of Country followed by the reading of the Self Advocacy Statement of Recognition. The Self Advocacy Statement of Recognition credits and pays respect to the people with disability who have worked to secure the everyday rights that people without disability take for granted. Why do we read this? The work of Self Advocates is largely unacknowledged. Self Advocacy groups have a rich history of activism, protest, protecting the rights of people with disability and being agents for social change, though the Self Advocates who have endured abuse and discrimination and stood up for change are rarely recognised for their ground breaking actions.
What is Self Advocacy?
At its core Self Advocacy is a human and civil rights movement. The movement began in Sweden in the 1960’s, when a group of parents whose adult children with intellectual disability were living in institutions decided their children had the right to decide how they spent their leisure time. Resident groups made up of people with intellectual and other cognitive disabilities formed. The movement grew and spread across the globe and by 1980 it had arrived in Australia. The Self Advocacy movement has been instrumental in calling for and advising on the closure of Australia’s institutionalised system of disability accommodation, care and support from the 1980’s until the present day.
Self Advocacy is twofold, it is both collective and individual.
Collective
Self Advocacy groups are run by people with disability for people with disability; people join together to have their voices heard, support each other and advance disability rights and interests. Self Advocacy groups are often asked to share their expertise to inform changes to disability or community service provision and support policy reform. The collective approach, where a group of people come together to speak about their shared lived experiences, has the benefit of amplifying the voices of people with disability to help ensure they are heard, and provides support to individuals as they share their stories of abuse and discrimination, and change. Through group Self Advocacy people also develop their identity to include ‘Self Advocate’ as a valued and meaningful role that is equal to the role of ‘Disability Advocate’. Collective self advocacy works at the systemic level and its impact is greater than the word ‘self’ implies.
Individual
Individuals can advocate for themselves to have their needs met and their rights upheld. This is a vital part of self advocacy. As people learn about rights, develop a greater understanding of their needs, including their own disability and community access needs, and develop the skills and confidence to speak up, they become less vulnerable to abuse, neglect and exploitation. The learning, skill development and confidence needed to successfully self-advocate builds over time and is most successful when developed with peers in a safe place without power imbalances, i.e. a Self Advocacy group.
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The benefits of Self Advocacy
A recent literature review into collective self advocacy for people with intellectual disability found extensive benefits to belonging to a Self Advocacy group. Benefits to members included increased social capital, practical and emotional support, increased employment opportunities, opportunities to sit on boards, reference groups and advisory committees, opportunities to work alongside other organisations on campaigns and disability rights activities, support to make changes in their own lives, access to resource and information and helping people to cope during difficult points in their life (Tilley, et al. 2020).
Self Advocacy groups give members the opportunity to talk about and understand the exclusion, abuse and trauma they experience; to be listened to and empowered to take actions to have their rights upheld and speak up to protect their safety. Groups provide support to members as others in the group are there for them and understand their experiences. Self Advocacy groups are not facilitated or owned by service providers or carers, making them safe places for people to share their lived experiences and make plans to protect their rights.
Self Advocacy groups are often intersectional. Groups like Rainbow Rights for people with intellectual disability who identify as LGBTIQA+, Power in Culture and Ethnicity for people with disability from culturally diverse backgrounds, Positive Powerful Parents, a group for parents with intellectual disability who have had contact with the child protection system and Voices for Change, a group for people with ABI who have been to prison all serve a unique purpose giving voice to the most marginalised people in our community.
The work of Self Advocacy groups benefits the entire community by countering all types of discrimination, within systems and the community at large. Self Advocacy groups know what discrimination people with disability are facing as groups are member driven. Governments rely on Self Advocacy groups providing expedient, practical and low or no-cost expert knowledge to inform service delivery and systems change. Groups follow and share best practice methods of inclusion, accessible information sharing and supportive decision making. Groups also develop and share bespoke resources that are responsive, relevant and meaningful to people with cognitive disabilities, and disseminate modified and accessible versions of material that would otherwise be inaccessible.
Systemic discrimination has been noted by all Self Advocacy groups in Victoria as continuing to be a major barrier to people with disabilities, preventing them to access the whole community and being valued and safe within it. Self Advocacy groups are a safeguard for people with intellectual disabilities, ABI and complex communication support needs. These people are particularly at risk of neglect, abuse, violence and the entire spectrum of discrimination, especially if they are without support from and lack a strong connection to their community. Self Advocacy groups bolster and uphold human rights for people with a disability while assisting to target changes needed to make the community a better place for everyone.
The SARU
The Self Advocacy Resource Unit (SARU) was established by the Victorian Government in 2008 to support and resource Self Advocacy groups. The SARU supports groups for people with intellectual disability, people with acquired brain injury (ABI) and people with complex communication support needs, including people who are deafblind and people with disability who speak languages other than English. The SARU’s caveat of supporting and resourcing Self Advocacy for these groups recognises their unique needs. People with intellectual disability, ABI and complex communication support needs continue to be the most marginalised and discriminated people with disability in Australia. Self Advocacy groups provide a place for
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people to learn about their rights, develop their skills, have their voices heard and form relationships with people outside of their family or disability service provider.
SARU works to support the sustainability of self advocacy groups though it does not fund groups. The support that SARU provides includes:
o Helping groups to develop strong and meaningful self advocacy plans o Supporting groups to become stronger and to become self-sustaining, including support to source funding and write grant applications o Hands on support for work or projects undertaken by the groups o Running training o Building networks o Development and provision of resources e.g. booklets, toolkits, videos, access to interpreters, finding meeting spaces, building relationships with community partners o Opportunities for group members’ involvement in the activities of SARU, including employment and governance of the SARU, conferences and forums.
In November 2015 the Australian Government Senate Community Affairs References Committee Inquiry
into Violence, Abuse and Neglect Against People with Disability in Institutional and Residential Settings emphasised that all levels of government need to acknowledge the vital role that formal and informal advocacy, including Self Advocacy groups, plays in addressing violence, abuse and neglect of people with disability. The recommendations included ‘further consideration of the Victorian Self Advocacy Resource Unit, with a view to roll out across other states and territories.’
In 2016, the Parliament of Victoria Family and Community Development Committee Inquiry into Abuse in Disability Services included the recommendation that ’The Victorian Government use its position on the Disability Reform Council to support the roll-out of a self-advocacy program nationally, based on the
Victorian Self Advocacy Resource Unit model.’1
In 2016 SARU was commissioned by the National Disability Insurance Agency (NDIA) to work with Self Advocacy groups across Australia to develop a National Model for Group Self Advocacy. A model was developed, but there has been no action by the NOIA, DSS or the Federal Government to develop and resource a national self advocacy sector.
Self Advocacy in Australia today
Since its emergence in Australia in the 1980’s self advocacy has been at the mercy of the swings and roundabouts of Australia’s political system. A national approach to self advocacy was established in the 1980’s with the federal government funding a National Self Advocacy Resource Unit in 1986. Unfortunately, through the 1990’s many of the Self Advocacy groups that had flourished lost their funding and the National Self Advocacy Resource Unit closed its doors.
Through the 1990’s and early 2000’s Self Advocates kept groups going without government support, but some of the momentum of the early years of was lost.
In 2008 the Victorian Government recognised the contribution that Self Advocacy groups make to the wellbeing of people with disability and the broader community and funded the Self Advocacy Resource Unit. The Victorian Government also provides a small amount of ongoing annual funding to only four Self Advocacy groups.
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As mentioned above, in 2016 the NDIA commissioned the SARU to develop a National Self Advocacy model. The SARU consulted with Self Advocacy groups across Australia to develop the model, the Voices Together website was one of the outcomes of this project. From 2016 the roll-out of tier 2 of the NDIS, the Information, Linkages and Capacity Building (ILC) program promised small user-led groups such as Self Advocacy groups support through a solid investment strategy with grant rounds dedicated to Disabled Persons Organisations (DPO’s). Some Self Advocacy groups have been successful securing short term, time limited project funding to undertake individual and organisational capacity building activities with people with disability. Although the self advocacy sector has benefited from the financial investment of ILC, the short term, competitive nature of the grant rounds mean Self Advocacy groups have been surviving project to project, with little certainty of funding. The transfer of the ILC from the NDIA to the Department of Social Services (DSS) and the completion of the 2019 — 2022 investment strategy in June this year without a new investment strategy in place, coupled with the pandemic has left groups with a very uncertain future.
Recommendations
In order to strengthen protections and ensure people with disability are free from violence, abuse, neglect and exploitation the SARU recommends that a national approach to resourcing and supporting self advocacy be rolled out. We believe that the National Disability Advocacy Program and all State and Territory governments, through their respective Disability Advocacy Programs should include adequate provisions and funding for self advocacy, now and into the future. In real terms, this means ongoing funding to self advocacy groups, supporting them to continue and grow the crucial work they do in the knowledge that their work is recognised as essential and equal to other advocacy and disability services. National conversations must take place to develop a comprehensive and aligned strategy to ensure that the boom and bust cycles of the previous decades are not continued. We recommend building on the extensive body of knowledge already developed by Self Advocacy Groups around Australia and the SARU to inform the growth of a robust, resilient and sustainable self advocacy sector that positions people with disability as proponents of change within community. We also recommend that Self Advocates be included in all aspects of the development and roll out of a national Self Advocacy program and that ‘Nothing About Us Without Us’ be embedded as a cornerstone of all disability reforms in Australia.