(For Presenters Biography’s please see ‘Conference Speaker’ page)
LIFE CAN BE AMAZING – Shane Rence & Glen Sheppard
Shane introduced this session by talking about the Brotherhood of the Wordless and their successful application for one of CRU’s Disability Leadership Project grants. These funds were used to conduct a ground-breaking seminar, Out of the Silence, in October 2015. Shane talked about why leadership by people with disability matters and why the Brotherhood members wanted to share their experiences and insights through this seminar.
Glen’s presentation was about his “amazing life”. He faced many challenges in his early years. In his own words: “The first 16 years were rough. However, now my life is so fulfilling and I’m over the moon with happiness”. Glen’s presentation is a cautionary tale of what happens when we presume that people who don’t talk have limited potential and nothing to say, but it was also an inspiring story of hope, possibility, family fidelity and a determination to succeed.
DARE TO DREAM AND LIVE THE DREAM – Bobby & Tracy Pate
Bobby is a teenager who loves an adventure. Just “giving it a go” has led to a full life. Bobby is a student, state representative, swimmer, tri-athlete, surfer, dirt bike rider, artist, actor and someone who even at the age of 15 contributes much back to the community.
Bobby’s family’s belief in him has been instrumental in Bobby having the same opportunities as his siblings. Tracy shared strategies for connecting with community, particularly stressing how to be opportunistic, how to ask, and how to stay positive on a daily basis, especially when times are challenging.
SUPPORTING PEOPLE WELL – WITH COMPASSION, COLLABORATION AND RESPECT – Kate McGinnity
What does respectful support look like and where can it take you and those you care about? In this session, the role of compassion, collaboration and respect in supportive relationships was articulated through personal stories. Kate talked about a variety of support contexts and types of support, and will describe the approaches and strategies that are making a difference in people’s lives.
BOUNCING HIGHER TO HELP: DUAL PERSPECTIVES FROM CONSUMER AND THERAPIST – Emma Gee
As an occupational therapist and young stroke survivor, Emma relayed her own journey to date, sharing her insights as a therapist and her newfound consumer’s perspective as a recipient of many of the services accessed by people with disability. In this session Emma drew on her own experience to highlight the importance of respectful support to the processes of recovery and living well – supporting people to bounce higher.
AND WHAT WILL YOU DO WITH THIS ONE WONDERFUL THING CALLED YOUR LIFE? – Ann Greer
This session explored the role of respectful and creative coordination in supporting people with disabilities to build the best life possible. It teased out the elements of good support using stories to illustrate what’s possible. Ann presented a range of planning and community inclusion strategies, with a clear message that services can play a pivotal role in delivering good lives for people with disability – always with, rather than to, the person and their family.
LOOK AT MY LIFE NOW! STEP BY STEP, IT’S POSSIBLE! – Anita O’Brien & Darren Hammer
Ten years ago, Anita’s son Warren, now 41, was attending and living in traditional services that did not suit him. Through developing a vision for his life, Anita has, step by step, assisted Warren to develop an inclusive life including: meaningful work, valued roles allowing opportunity for relationships, a supportive neighbourhood, and a home of his own.
Anita’s presentation focused particularly on the reciprocal nature of the housemate arrangement that enabled Warren to live in his own home. Warren’s former housemate, Darren, described his role in providing companionship, security and practical support, while also sharing life together. Anita explained that focusing on vision, even in times when ‘life happens’, counters discouragement and inertia so Warren can say proudly: ‘Look at my life now!’
NURTURING RELATIONSHIPS TO SUSTAIN US – Roschell Van Den Brink & Vanessa Scott-White (BIPI)
Roschell and Vanessa, along with 3 other mothers, have recently established a Friday mums get-together to talk with people who are on the same page, share ideas and learn from one another. During their presentation they shared a little of their experience about the importance of connecting with others and how this has nurtured and sustained them.
Roschell and Vanessa’s message is that families do not need to do things all alone; maintaining positive connections helps them to aim higher and keep going. Their story reassured other families worried about becoming isolated in a self-directed future.
IN THE DRIVER’S SEAT – ON THE ROAD TO THE NDIS AND LIVING A GOOD LIFE – Queenslanders with Disability Network (QDN)
This presentation shared information about the peer development program, the power of peer-led education for people with intellectual disability and the outcomes and impacts of this approach for both the participants who attend the workshops as well as the peer facilitators themselves as leaders and self-advocates in their own lives.
This session was relevant for people with disability who want to experience the peer-led processes used in the Ready to Go workshops. It was also be extremely relevant for others who wanted to understand how people with intellectual disability can be engaged in learning about the NDIS and express their hopes and dreams.
LEADING CHANGE TOGETHER: REALISING OUR POTENTIAL IN A SELF-DIRECTED FUTURE – Dr Sam Smith
This session focused on the characteristics of personal and professional leadership that supports positive change and growth in the context of self-directed support.
MY SELF-MANAGED OPPORTUNITY – Narissa Wilson
Through her 29 years of lived experience Narissa has gained deep insights into directing, leading and living the life she chooses. She focuses on being responsive to change, creating change for herself, cultivating a small, powerful core group of people, and managing her supports so they are flexible and agile but still function within a service structure.
This presentation identified ways Narissa has sought opportunities and cultivated her self-managed supports and services to live a life she chooses.
POSITIVE FUTURES: THE STRONGER SMARTER WAY – Chris Sarra
Chris drew on his own personal and professional story to talk about the Stronger Smarter approach to leading change – a story and philosophy with significant parallels, lessons and challenges for those trying to effect authentic change in the lives of people with disability.
THE FUTURE OF INCLUSION: HARNESSING POSSIBILITY – Dan Habib (via Skype)
Before his son Samuel was born, Dan Habib rarely thought about inclusion. Now he thinks about it every day. In this session an edited version of Dan’s film Including Samuel was shown. It is a highly personal film which captures Dan’s quest to understand the promise and challenges of inclusion through interviews with his own family, other parents, disability advocates and educators. The film is also a family love story, featuring not only Samuel but Samuel’s mother, Betsy, and brother, Isaiah.
Dan discussed and answered questions on how we might disable segregation and really achieve inclusion – in education and elsewhere.
THE GOOD, THE BAD AND THE UGLY: LESSONS FROM THE IMPLEMENTATION OF SELF-DIRECTED SUPPORT IN SCOTLAND – Dr Sam Smith
Sam outlined how self-directed support developed in Scotland, affording an opportunity to consider what has worked well and what could be improved. As the Scottish system is often upheld as an exemplary model, this analysis will be very relevant for Australia’s move to the NDIS.
Stories of positive change highlighted the opportunities that arise when people move on from traditional (or institutional) services using individual budgets. Sam discussed how C-Change used individual budgets as an opportunity to redesign traditional services and how that impacted on the people supported, employees and wider networks. She also discussed stories of organisation development and collaboration exemplified by the pioneering work of a range of organisations across Scotland.
Through stories and film, many examples were provided of the transformative potential of self-directed support when issues of power, choice and control are placed at the heart of practice.
STILLNESS IN ACTION: DON’T JUST DO SOMETHING, STAND THERE! – Jane Sherwin
Providing good, respectful support has always been crucial in enabling individuals with a disability to have rich and meaningful lives. Now that self-direction is a more viable option for individuals and families, it helps to understand what ‘respectful support’ looks like. Even before the ‘doing’ of support, time spent thinking and clarifying is time well spent. This session contrasted two different types of support relationships and explore a range of possible roles for workers engaged in ‘support’. The session also examined the expectations of individuals and families and the mindsets of workers that are likely to be helpful.
SUPPORTING PEOPLE WELL: THE CHALLENGE OF TRANSFORMATION WITHIN LARGE SERVICE SYSTEMS – Lorna Sullivan, Damien Kenny & Tom Hegarty
In this session, Lorna identifed the challenges of addressing transformation within large service systems. She discussed the process of navigating change for individuals, their families and others who are striving to open up possibilities so people can develop their own unique lifestyles.
Damien told a story of change, hard work and inspiration. What Damien calls ‘chapter two’ began 10 months ago with a change of address, building of a new support team and access to new life planning tools.
This was a story told from multiple perspectives and Damien’s team leader, Tom, and his family also contributed to this presentation.
CIRCLES IN SCHOOLS: BUILDING INCLUSION AND BELONGING – Katrina Fredberg & Sue Smith
This presentation explained the purpose of Circles@School, a project which aims to provide students with disability attending mainstream schools (and their parents) with a network of support and belonging which strengthens their chances of a successful, inclusive education and participation in their school and local community.
Katrina outlined the structure of the initiative and the role of the facilitator, as well as how it is restructuring under the NDIS.
Sue Smith gave a personal reflection about her son Isaac being involved in the project and the difference it has made to their lives
ADDRESSING VULNERABILITY THROUGH ADVOCACY AND RELATIONSHIPS – Maureen Fordyce (AMPARO)
Despite the promise of the NDIS, we can predict that people with disability from culturally and linguistically diverse backgrounds will continue to be at greater risk of not having their fundamental needs met.
Maureen shared stories and insights from working alongside vulnerable people who do not have a voice, or close family or friends who can support their aspirations, or speak on their behalf. She explained why strong independent advocacy will always be needed and how advocacy alongside the building and strengthening of close relationships in the lives of people with disability is critical to safeguarding the rights and well-being of all people with disability.
MARIA’S STORY: A PERSON LABELLED “TOO COMPLEX” CREATING LIFE IN COMMUNITY – Maria & Leanne Burke
Maria has always had a rich family life but education, health & formal support systems failed her for nearly 50 years. Maria has a strong belief that there are no barriers to her doing what she wants in the moment despite daily disability & health related challenges. This presentation told how Maria moved from a typical disability life, shared support with 3 other people and day centre activities, to living in her own home, and developing relationships in community.
Leanne spoke about how their family drew on their natural authority to make decisions in Maria’s interests and how they now direct her formal support arrangements in partnership with a host agency for self-directed support.
LOOKING FORWARD – Rebecca Murphy
The Murphy clan has always had a clear vision for Rohan, age 9, which has underpinned their decisions and dreams for him. Confronted by a lack of services, and specialists who didn’t see their son for who he is, they sought out alternative supports and to challenge people’s perceptions.
Staying true to the vision of ensuring Rohan has a meaningful life has not always been easy. Yet Rohan’s remarkable story of determination and defying all specialists’ prognoses has proven the central importance of love and connectedness. Learning to be strong advocates, a united clan, and finding a sense of renewal when the road gets tough have strengthened the family’s determination.
Rohan now dreams of being a lawyer and owning a red Ferrari. Who could have dreamed that?
WHY IS COMMUNITY BASED WORK SO DIFFICULT TO ACHIEVE FOR PEOPLE WITH DISABILITIES : WORKING FOR CHANGE – Peter Symonds
This presentation examined why people with intellectual disability and ASD in particular are being streamed into non-work programs and more importantly how we might as individuals and organisations build people’s expectation that open employment in community based jobs should be the natural activity after school.
Peter discussed how we might sustain the leadership for change needed to finally achieve real jobs for people with disability.
LEADERSHIP IN A TIME OF CHANGE – Meg Sweeney
“If you don’t design your own life plan, chances are that you will fall into someone else’s plan. And guess what they have planned for you? Not much!” Jim Rohn
It is a vital time for leadership if we are to take up opportunities the NDIS presents. Meg explored how challenging common limiting assumptions about people with disability leads to better lives.
SUPPORTING NEW BEHAVIOUR – Kate McGinnity
People with autism and other movement differences challenge us to rethink our understandings of communication, body control and behaviour that is puzzling or challenging.
During this presentation, participants learnt why and how sensory movement differences impact individuals with autism and how video technology can be a powerful learning tool for individuals with autism and others with a visual learning strength. This session will be filled with specific examples of how video technology can support new learning, new behaviour, enhance lives, promote competence and more! “If a picture speaks a thousand words, how many words does a video speak?” J Endow.
CLOSING PANEL: LOOKING BACK, TAKING STOCK, LOOKING FORWARD – LESSONS OF LEADERSHIP AND CHANGE – Connie Young, Kevin Cocks & Gerhard Tromp
CONNIE YOUNG is the mother of eight children and has been married to Jim for more than 60 years. She was a primary school teacher for around twenty years whilst rearing children on a busy cane farm. After retiring from the farm, Connie and Jim became moteliers for thirteen years.
Connie’s youngest daughter, Eileen, was born in 1971 and sustained brain damage and subsequent physical and intellectual disabilities due to complications associated with being Rh negative. It became clear to Connie and Jim that if Eileen was to have every opportunity to enjoy as full a life as her siblings, they needed to be connected and well-informed. Ensuring Eileen would be supported to flourish has led Connie on a long but fulfilling journey.
KEVIN COCKS is a highly respected Human Rights and disability advocate. Kevin has been Queensland’s Anti-Discrimination Commissioner since 2011.
Kevin has received a number of community recognition awards, including an Order of Australia (AM) in 2010, the Australian Human Rights Medal 2005 by the Human Rights and Equal Opportunities Commission (HREOC), the Centenary Medal ‘for distinguished service to disability services in Queensland’ in 2003 and a QUT ‘Outstanding Alumni Award’ in 2003.
GERHARD TROMP has been involved in the lives of people living with disabilities since 2012 when he started as a support worker. Since then he has been working with Homes West, Open Minds, and Staffing Options.
Through this work Gerhard has developed an interest in promoting good lives for people living with disabilities. He has been a member of CRU’s Management Committee since late 2015, having come to CRU seeking information to assist him in his contribution as a Circle member.