On passing by

by Patricia O’Brien, previously Director, National Institute for Intellectual Disability, 2004 – 2009

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In October 2004, as the plane touched down in Dublin after 24 hours of flying from New Zealand, images of my great great grandparents, Joseph and Mary O’Brien from Killarney, came flooding in. Any thoughts of self-pity for the impending jet lag were swiftly overcome by thinking of how it must have been for them and their two children, Joseph and Kathleen, making a reverse journey to South Australia, 139 years ago in 1875 on board the barque Lady Bruce, that left from Southampton.

Throughout my stay in Dublin over the last five years I have often thought of the courage and bravery of all who travelled on the ships to escape famine. In Australia they came to a rugged land of sweeping plains and made a life that my generation has greatly benefited from. In the loss of their homeland they ensured that their Irishness was passed on from generation to generation. So, it was with a personal sense of history that I accepted a position at Trinity College Dublin in 2004, to develop the National Institute for Intellectual Disability (NIID). I would like to share you some reflections on my time in Ireland, as I leave now to take up a new position as Professor of Disability Studies at the University of Sydney.

On arrival in Ireland I was eager to make contact with stakeholders within the area of intellectual disabilities and I appreciated the opportunity to speak at the 2005 AGM of Inclusion Ireland, where the Disability Act (2005) was under fierce discussion. The question under scrutiny was: Would the Act entitle all people with intellectual disabilities to be adequately resourced for the outcomes of the individual assessments and aligned coordinated plans that were now to be made mandatory under its auspices?

Ring-fencing of finances was the proposed answer given by the government’s representative who addressed the meeting. However, what has transpired throughout the last several years would indicate that the fence ringed shallow ground. Five years on, the momentum of such legislation as the Disability Act (2005) and the Education for Students with Special Needs Act (2004) has gone into recess as services, family members, and self-advocates cope with the government’s snipping of the fencing wire in an effort to make it stretch further.

However, this is a time of extraordinary international economic downtown, whereas over the length of my stay in Ireland I do believe there has been a growing vision of how life for people with intellectual disabilities can become more personalised. I have meet people who dreamed of, and now live, in their own apartments; who dreamed of moving from campus centres and now live in group homes in the community; who dreamed of moving away from sheltered employment and now have real work for real pay; dreamed of setting up their own businesses and now run a coffee shop or a card.making venture; dreamed of having a relationship and now go on holidays together with their partner; dreamed of international travel and now have become a frequent flyer; dreamed of going to college and now have become a Trinity graduate.

All these things I have celebrated with the people themselves, their family members and agency staff. These people have been the pathfinders and the momentum created by their success must not be lost within the present extraordinary economic climate. This is particularly so, in view of the findings of the first stages of two studies that were conducted by the National Institute for Intellectual Disability (NIID) throughout my time in Ireland. The first study was a National survey of family members of people with intellectual disabilities. The second, entitled All we want to say, surveyed persons with intellectual disabilities across Ireland. Both projects were inclusive, that is, they involved family members and people with intellectual disabilities as co-researchers in the collection and interpretation of the survey responses. The overall message from both pieces of work was that people needed more choice and control over how support for themselves or their sons and daughters was identified and delivered. More voice—being respectfully listened to—was also expressed as a requirement for change. Put another way, they wished to be at the centre of all decision making associated with their lives, or for those they supported.

Where change has come about, I would suggest that it has been combined not only with deep respectful listening but a shared vision between those with the lived experience of disability and their supporters. Over the last five years new terms have entered the rhetoric of those responsible for providing support for persons with disabilities. These include: individualised funding; direct funding; family governed services; person centred services; micro boards and optimal design of alternative services. The government, enlightened managers and staff of service agencies are joining with family and self-advocacy groups to explore the challenges associated with what these terms mean for embracing personalisation. This will continue to take courage and resilience in the present economic circumstances, but I would argue that change is not predicated on how much ground can be ring-fenced, but rather the willingness to change what is being sowed in the ground. Change is more often about paradigm-shift, such as that embraced by Trinity College Dublin, where the gates of a third-level institution have been opened to students with intellectual disabilities. The Certificate in Contemporary Living (CCL) has opened up a whole new world for people with intellectual disabilities. Students describe that they no longer feel socially isolated and see a future for themselves that previously they would have only dreamed about. The Certificate owes much to the vision of family members who wanted a different future for their sons and daughters.

Ireland has begun to dream, and to act upon, a different future for people with intellectual disabilities. My five-year stay in Ireland was relatively brief, in terms of the time it takes to change policy and practice. But I see indicators suggesting that in another five years the landscape will be different. Choice will mean that people will no longer live in accommodation on the grounds of long-stay institutional settings; that people will no longer attend day programmes designed to meet the needs of the group and not the individual; that people will leave behind the mundane sheltered employment tasks, to working in mainstream settings with the support of job coaches; that people and their families will have funding options beyond that of traditional funding directed to a single service—to individually designed packages managed by themselves (or a preferred fund holder) enabling them to purchase support and resources required for their expressed need, from a multiple range of service providers.

Over the last five years the NIID has run many events to raise consciousness of its mission of inclusion through education, research and advocacy. I would like to thank you for responding positively to the work of the NIID so that its vision could be initially activated on my watch. Ireland has a deep generous heart and I was truly fortunate to be among you. I will always be grateful that I had the opportunity to pass by, and to benefit so deeply from being in your midst and learning from you about my rich Irish heritage. As Joseph and Mary O’Brien dreamed of the new land that I am now returning to, I now dream of returning to the land where my dreams of an inclusive Ireland have started to come true.
Until we meet again …

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