There and back again – Our South Australian Journey. The use of skilled communication partners in the criminal justice space

Ms Jennifer Jacobs1, Ms Cheryll Rosales1

1Uniting Communities, Adelaide, South Australia

Background:
Our adversarial legal system puts those with complex communication needs (CCN), stemming from disability, illness or injury at significant disadvantage. The Evidence Act 1929 (SA) s4 says that a person will be taken to have complex communication needs ‘if their ability to give evidence is significantly affected by a difficulty to communicate effectively… whether the communication difficulty is temporary or permanent and whether caused by disability, illness, injury or some other cause.’ The Communication Partner Service (the Service),funded until February 2020 by the SA Attorney General’s Department, was created to fulfil some of the priority actions identified in the Disability Justice Plan 2015 – 2017 (the Plan). The Plan highlighted significant gaps in the system, such as inadequate support for those with CCN to give evidence.

Method:
The Service utilises highly skilled volunteers who hold tertiary qualifications in relevant fields and have extensive experience working with people with disabilities, a lived experience of disability and/or experience in the criminal justice space. They help facilitate effective communication between individuals with CCN and criminal justice personnel by making suggestions for reasonable communication adjustments.

Suggestions for reasonable communication adjustments are made in several ways. The Communication Partner will speak to the client and any people who are there to support them at the interview or legal meeting. They will ask about strategies that work best for them, how they best communicate, and what they need in order to communicate successfully. Suggestions for adjustments are then discussed verbally with the interviewing officer before the meeting or interview begins. During breaks more adjustments may be recommended, and after the meeting the Communication Partner will follow up with a written report that will outline adjustments recommended during the meeting along with any additional recommendations that may
be useful in future meetings.

Communication Partners support the giving of evidence at police interviews, in legal meetings and during court proceedings.

Results:
Many criminal justice personnel have interactions where they are unaware that their approach hinders good communication. They do not realise that it is how they are asking questions can affect the perceived reliability of a witness. Without communication adjustments those with CCN find it difficult to engage effectively in the criminal justice process. With adjustments to how information is presented people with CCN have increased capacity to provide best evidence and accessing justice becomes achievable. Since July 2016 the Service has had over 250 contacts with the criminal justice sector.

Implications:
The Communication Partner Service is ending, there has been no identified replacement service. Through case studies, we share reasonable adjustments to common questioning styles that have worked for us while supporting at legal meetings, interviews and at court. We are hoping that family, friends, and those with lived experience will be able to take what we have learned and be the communication assistants in this space.


Biography:

Jen Jacobs works with the Communication Partner Service at Uniting Communities. She worked as a speech pathologist for 16 years in a variety of settings, including rehabilitation with adults with acquired brain injury and community health with children and families. Jen holds qualifications in Speech Pathology and Volunteer Management.

Cheryll Rosales currently works with the Communication Partner Service at Uniting Communities. She is a Developmental Educator and was a teacher of students with special needs for ten years, specialising in functional life skills, positive behaviour support and AAC. Cheryll holds qualifications in Education, Law and International Relations.

Self-advocacy, peer networks and accessible information provision: how they have shaped our lives

Our Voice SA Self Advocates & South Australian Council on Intellectual Disability Inclusion Workers 
Ian Cummins1, Tiffany Littler1
Elizabeth Crawford1, Gavin Burner1,2, Chris Bergin2, Sarah Byrne2Rebeka Touzea2

1Our Voice SA, 2South Australian Council on Intellectual Disability

Presentation:
Self-advocacy is a powerful tool for improving the lives of people living with intellectual disability. The members of Our Voice SA and SACID will share personal testimonials of how self-advocacy, peer networks and having access to information that is easy to understand has shaped their lives. This presentation demonstrates the benefits of knowing your rights, having peer networks and self-advocacy.


Biography:

Ian was born in Peterborough but grew up in Adelaide, living in MINDA from the age of 16. Ian has been self-advocating for over 15 years and it has developed into a passion. Ian’s first experience of self-advocacy was when he was living at MINDA, Ian self-advocated to move out of institutionalized housing.

Tiffany is 30 years old and a proud self-advocate. She has been self-advocating for over 10 years. Tiffany’s first experience of self-advocacy was when she was looking to move out of her parents’ home and spoke to Disability SA about what she wanted in her own home.

Libby grew up in an era when children with special needs attended special schools. She lived and attended school at Regency Park Crippled Children’s. Libby found her calling last year when she joined Our Voice SA. She is loving being involved in the self-advocacy movement and enjoying providing mentoring to others.

Gavin grew up on the York Peninsular. He was the youngest in his family and lived on the family farm until adulthood. When his father sold the farm and moved into the town, Gavin’s family arranged for him to move to the “Big Smoke”. He lived in supported accommodation and worked in supported employment for a short time. Gavin soon found his feet, moved into his own home and now works in open employment.

Chris is a self-advocate representing the voice of people with intellectual disability on the SACID Board, Express Yourself Self Advocacy Group, and represented South Australia on the Inclusion Australia – Our Voice Committee. Chris is now an Inclusion Worker at SACID.  Chris believes it’s important for people with intellectual disability to be included in the community, to have new opportunities to meet new people and to take part in community life.

Sarah is an Inclusion Worker at SACID where she uses her voice to support SACID to develop information for people with intellectual disability and their families. Sarah has been an Ambassador for Down Syndrome South Australia. Sarah believes it’s important for people with intellectual disability to be included and valued in the community so the community can learn to be inclusive of people with intellectual disability.

Rebeka is a skilled public speaker. She contributes to her community through involvement in dancing, where she is a mentor of school aged children with disability. Rebeka is a role model to others as someone who lives independently, maintains open employment and has a busy community life. As the current Inclusion Australia – Our Voice National representative for South Australia, Rebeka speaks up about issues important to people with intellectual disability.

Speaking up for yourself – the first steps to being a self-advocate

Our Voice SA members with Karen Rogers & Alison Vivian
Ian Cummins1, Tiffany Littler1, Elizabeth Crawford1, Gavin Burner1, Karen Rogers2, Alison Vivian2

1Our Voice SA, Purple Orange

Background:
Our Voice SA is a 100% user-led self-advocacy group in South Australia. Our Voice SA became an incorporated body in 2007 and currently has 47 members living with intellectual disability. The NDIS ILC funding has enabled Our Voice SA, supported by Purple Orange, to make Our Voice SA stronger and louder.

Our Voice SA recognise that many people living with intellectual disability are still learning to speak up for themselves, understand their rights and be involved in making decisions. Our Voice SA has been delivering self-advocacy training to people living with intellectual disability across South Australia.

Aims/ purpose:
Presenters with an intellectual disability will involve participants in a conversation about how to speak up for themselves, how to make decisions and the human rights of people with disabilities.

This workshop is a condensed version of the training workshops Our Voice SA has been delivering to peer networks across metropolitan South Australia. It will include how to be a self-advocate, decision making and human rights. Part of the workshop will also include Human Rights Bingo, a fun and interactive way to learn about your rights as a person living with a disability.


Biography:

Ian was born in Peterborough but grew up in Adelaide, living in MINDA from the age of 16. Ian has been selfadvocating for over 15 years and it has developed into a passion. Ian’s first experience of self-advocacy was when he was living at MINDA, Ian self-advocated to move out of institutionalized housing.

Tiffany is 30 years old and a proud self-advocate. She has been self-advocating for over 10 years. Tiffany’s first experience of self-advocacy was when she was looking to move out of her parents’ home and spoke to Disability SA about what she wanted in her own home.

Libby grew up in an era when children with special needs attended special schools. She lived and attended school at Regency Park Crippled Children’s. Libby found her calling last year when she joined Our Voice SA. She is loving being involved in the self-advocacy movement and enjoying providing mentoring to others.

Gavin grew up on the York Peninsular. He was the youngest in his family and lived on the family farm until adulthood. When his father sold the farm and moved into the town, Gavin’s family arranged for him to move to the “Big Smoke”. He lived in supported accommodation and worked in supported employment for a short time. Gavin soon found his feet, moved into his own home and now works in open employment.

Alison has been volunteering in the disability sector since 2014 and working as a Developmental Educator since 2003. In this time Alison has worked alongside children and adults to live their best life, helping people understand their rights and give them the confidence to speak up and have a say about what happens in their lives.

Karen is a mother to four adult children. Karen’s second child Daniel now aged 38 was diagnosed with epilepsy and intellectual disability at 4 and later with autism. Being a mother gave Karen’s life meaning but being a mother to Daniel shaped that meaning. It gave Karen a direction and a purpose and for many years she has worked alongside people living with disability and their families. Karen has worked in advocacy, case management and accommodation and enjoys supporting people to live their very best life.

Feminist theories of freedom and intellectual disability: new ways forward for the concept of encounter

Dr Stacy Clifford Simplican

Overview:
In this workshop, we will explore how feminist theories of freedom can inform the field of intellectual and developmental disabilities, particularly around the concept of encounter. Feminists have developed accounts of freedom that pay attention to the role of patriarchy in constraining the choices of women and, also, to the ways women achieve agency – even amid oppressive contexts. This bifurcated attention to the realities of oppression and the recognition of agency might be helpful to the field of intellectual and developmental disabilities: here too researchers need to interweave attention to the constrained social environments in which people with intellectual disabilities live and, at the same time, recognize how people with intellectual and developmental disabilities express and achieve agency. The aim of the workshop is give participants a richer understanding of freedom. I argue that we need a theory of freedom that shifts our attention from choice, control, and individualism toward qualities like action, spontaneity, and relationality. Doing so can inform recent work on the concept of encounter. Researchers use the concept of encounter to capture the kinds of social interactions that people with intellectual disabilities experience. I argue that situating these findings in the landscape of freedom, and not just social inclusion, helps justify why facilitating encounters is so important, particularly for support agencies and support staff. Finally, workshop participants will consider how empirical research in the field of IDD can help refine feminist theories of freedom.


Biography:

Stacy Clifford Simplican is a Senior Lecturer in Women’s and Gender Studies. She received her PhD in Political Science from Vanderbilt University in 2011. Her book, The Capacity Contract: Intellectual Disability and the Question of Citizenship (2015), analyzes the role of intellectual disability in political theory, American history, and the political strategies of self-advocates with intellectual and developmental disabilities. As a postdoctoral research fellow at Michigan State University and the National University of Ireland Galway, Stacy developed an interdisciplinary research agenda on the social inclusion of people with intellectual and developmental disabilities, and her work in this area appears in Research in Developmental Disabilities, Disability & Society, and Research and Practice in Intellectual Disability. Overall, Stacy’s work uses insights from democratic and feminist theory to rethink key concepts in the field of intellectual disabilities, while also using the experiences of people with intellectual and developmental disabilities to revise ideas and norms around democratic citizenship.

Wrap up session: What we can do with all the research!

Aine Healey1

1University of Technology Sydney, Sydney, Australia

Presentation:
By the end of the conference you’ll have heard a lot of research – but what do we do with it all? Bring along your ideas and thoughts to this session and together let’s work on what next! It’s a session for everyone who wants to make sure research helps people to have good lives. And, how we can all help to make this happen. Back by popular demand from the ASID 2018 conference, it is part conference wrap and part what next. It could be the most fun you’ll have at the conference!


Biography:

Aine has a long history of working in partnership with people with disability, and combines those skills with strengths in network development, communications, campaigning, collaborative partnering with government and non-government agencies, and systemic advocacy on issues of importance to people with a disability and other community groups. She leads Ideas Info Action, is part of an inclusive research team at University of Technology Sydney and supports some grassroots movements with developing skills in community organising and campaigning. Aine likes to make things (info, organisations, processes, communities) inclusive. Find her on twitter: @ainehillbilly

Twitter School!

Aine Healey1

1University of Technology Sydney, Sydney, Australia

Presentation:
Ever wanted to use twitter but was not sure where to get started? Come along to this session where you will learn twitter basics & tips. Discover how you can use Twitter to learn, connect, share, and create change. Bring your laptop or mobile device so you can start straightway!

(And if you are a twitter pro, please come along and share your skills with someone starting out)


Biography:

Aine has a long history of working in partnership with people with disability, and combines those skills with strengths in network development, communications, campaigning, collaborative partnering with government and non-government agencies, and systemic advocacy on issues of importance to people with a disability and other community groups. She leads Ideas Info Action, is part of an inclusive research team at University of Technology Sydney and supports some grassroots movements with developing skills in community organising and campaigning. Aine likes to make things (info, organisations, processes, communities) inclusive. Find her on twitter: @ainehillbilly

My experience of self-directing my own support

Mr Michael Mooney1

1NDIS participant, Reynella, Australia

Background
This session will share the lived experience of a person with disability who is now supported under a self-directed model, as compared to a previous traditional model. Michael has an intellectual disability and is supported to make good life decisions by his family and Circle of Support. Michael also has his own small business where he grows seasonal vegetables and herbs for sale at local shops and businesses.

Method
Through the Self-directed Support model, Michael was supported by CLP to build his capacity and confidence to create a personal life vision and to understand and articulate his needs and goals. Michael has been able engage and lead a small group of workers who were personally selected to match his needs, interests and aspirations for the future.

Results
Michael has built his capacity and skills to identify ‘best fit’ for workers to meet his individual needs and to recruit and lead his day to day support. The group of workers are building their capacity to self-organise and deliver support specific to Michael’s needs and vision. Together they are enhancing Michael’s independence through building his roles, capacity and confidence. Michael’s future is being safeguarded through supporting and strengthening his informal and freely given relationships.

Implications
Self-directed support assists people with disability to build a real sense of purpose in their life, a range of valued roles and the realisation of meaningful goals. Strengthening the leadership skills of individuals, their family and informal network builds greater safeguards for the lives of vulnerable people.


Biography:

Michael Mooney has lived in his own home for 25 years at Reynella. Michael is a keen gardener and runs his own business, Greens2U, selling fresh fruit and vegies at local outlets. Michael enjoys Classic Cars and spending time with family and friends.  Michael enjoys music and movies, and has a load of pets ie a menagerie!

Evaluating Self-Directed Support – Outcomes of a Family Leadership Model

Associate Professor Caroline Ellison1

1University of SA, Adelaide, Australia

Background
Research conducted by Flinders Uni in 2018, funded by the Dept. of Social Services, aimed to identify and articulate the critical elements in agency culture, beliefs, attitudes and behaviours that support the effective sharing of power with people with disability and families, through exploring the experience of Self-directed Support as compared with more traditional agency recruitment and supervision practices.

Method
The research used qualitative research processes to gain a rich and deep understanding of the lived experiences of individuals living with disability, their families and those providing support with a family leadership and self-directed support model. Surveys were used to measure respondents’ perceived and reported levels of empowerment, satisfaction and control. 13 online surveys were completed by people with disability (primarily intellectual disability); 12 were completed by family and friends of people supported by CLP; and 35 surveys were completed by CLP Support Workers. Face to face, in depth follow up interviews were also conducted with 4 people with intellectual disability, 3 family members, and 3 CLP Support Workers.

Results
The research affirmed the family led model through demonstrating positive outcomes as reported by people supported, families and workers. It clarified the underpinning culture necessary for such a model to succeed which derives from a fundamental belief in the capacity of people with disability and families to lead their own support. Individuals and families report increased self-confidence to direct their workers and move toward realising their individual goals and vision. Workers value the opportunity of working within a self-directed model, express increased job satisfaction and retention rates are improved.

Implications
The project affirmed the value of self-directed support as a way to build the capacity of people with disability and their families to exercise meaningful choice and control. It clarified the need for an embedded agency culture that sees workers in ‘right relationship’ with people with disability and their families.


Biography:

Assoc Professor Caroline Ellison is currently Crossing the Horizon Professor of Aging and Disability at Uni SA and an Adjunct Professor at Flinders Uni. Caroline has practice, policy and research interests around International development, gender and social inclusion, as well as a focus on capacity building and leadership. Caroline was the Inaugural Winner of the Developmental Educators Australia 2011 Dot Mills Award for outstanding contribution to the profession.

Building Family Leadership – Culture and Process – a Provider’s View

Ms Prue Gorman1

1Community Living Project, Christies Beach, Australia

Background
In the past, traditional models of ‘care’ often reflected an organisation’s needs rather than the individual’s needs. If service providers are to actively support people with intellectual disability, and their families, to develop their personal leadership skills and take on meaningful choice and control, providers must embed a service culture with underlying beliefs, attitudes and behaviours that support the effective sharing of power between participants, families and staff.

Method
Through an Innovative Workforce Grant from the Dept. of Social Services, the CLP has refined a model of Self-directed Support that builds on workforce practices developed in CLP over 30 years. This includes but extends beyond the use of person-centred tools and practices, to a culture of partnering in ‘right relationship’ with people with disability and their families. Self-directed Support assists each person to identify what is important for them in their support, helping them to recruit workers aligned to their vision and to direct them in their day-to-day work. This is strengthened through the active support of family and friends in this process.

Results
The work undertaken through the Grant provided the opportunity for the CLP to review and adapt its organisational structure and processes, taking the best of past practice and reshaping it to better fit in the NDIS environment. It provided an opportunity to explore ways to ensure sustainability of the model eg high intensity support from an Inclusion Coach at the start of new services, with decreasing direct contact with the person, family and workers as their self-directing capacity builds and develops.

Implications
Self-directed Support offers opportunities for people and families to build choice, control and flexibility with paid support. Family leadership fits well in the context of the NDIS as it:

  • Strengthens opportunities to create effective and sustainable support
  • Enables a focus on meaningful goals
  • Enables people with disability to have greater choice and control
  • Reflects the NDIS objectives of choice, autonomy and control

Biography:

Prue Gorman is the Executive Officer of the Community Living Project, which focuses on family leadership and self-directed support. Prue previously worked in the Australian Government and community care across several non-profit agencies. Prue is a fellow of the Governor’s Leadership Foundation and was a National Finalist in the Institute of Managers and Leaders Australian Leadership Awards.

Developing an evidence-based practice framework to guide support for decision making

Prof. Christine Bigby1, Prof  Jacinta Douglas1

1La Trobe University, Living With Disability Research Centre, Bundoora, Australia

Background:
This paper details the development of the LaTrobe Support for Decision Making Practice Framework that can be applied by informal or paid supporters of people with intellectual disabilities or ABI. These two groups share in common stable rather than declining cognitive impairment characterized by difficulties with executive function, self-direction and communication of varying severity.

Methods:
The framework was derived from a research program modelled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. In phase one we systematically reviewed the literature; and qualitatively explored the experiences of support for decision-making from the perspectives

of people with cognitive disabilities and their supporters in several grounded theory studies that included 32 adults with cognitive disabilities and 75 supporters. Phase two (feasibility and piloting) results supported phases three (evaluation) and four (implementation) which are currently underway.

Results:
The framework outlines the steps, principles and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with intellectual disabilities and guides those who provide support including families, support workers, guardians and health professionals.

Implications:
This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.


Biography:

Professor Christine Bigby is Director of the Living with Disability Research Centre at La Trobe University. She has won the ASID Research prize three times since 1993. She has published 6 book, 35 book chapters, over 135 journal articles and numerous research reports.  She is editor of the Journal of Policy and Practice in Intellectual and Developmental Disabilities.

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ABOUT ASID

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