Pathways to Inclusion: 4th International Association for the Scientific Study of Intellectual and Developmental Disability [IASSIDD] Europe Congress (part one)

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Colin Griffiths, Trinity College Dublin School of Nursing and Midwifery gives us our first overview of the IASSIDD in Vienna this year

IASSIDD is the premier scientific grouping that is dedicated to researching, and thereby improving, the lives of people with intellectual and developmental disability. Various conferences are hosted by IASSIDD each year, but the ones most frequented by European and Irish researchers are the World Congress and the European Congress. The former takes place every four years (next due in Melbourne in 2016); the European Congress also takes place every four years, but two years apart from the World Congress.

This year the European Congress took place in Vienna in high summer from 14-17th July 2014, although some events preceded and followed the main conference.

Vienna is at the cross roads of Europe, the city of Freud, the Third Man, Classical music and not least the Austro-Hungarian empire—given the timing of the conference, this was much featured in the news, with the approaching centenary of the outbreak of World War I. I found the city well presented, well regulated and very busy. The general theme of the architecture is of low-rise, well-planned buildings, but it is less impressive than Paris or London. The University of Vienna is located on the edge of the old town and it was there that the deliberations of the conference took place.

In a conference where there are daily plenary sessions and up to 15 concurrent sessions, it is only possible to get a sense of the wonderful variety and scope of the reported work. Because my own interest is primarily concerned with people with profound and complex intellectual disability, I attended several sessions relating to how to support people in this group. One session that was most interesting was entitled ‘Unsafe soundscapes as a cause of challenging behaviour in people with profound intellectual and visual disabilities’. This was presented by Kirsten Van Den Bosch of the University of Groningen. She described a project in which she had developed an application for smart phone [called MoSART] that would analyse the soundscape (the level of background noise / music/ conversation that is to be found in every situation). It is hypothesised that background noise can block out or obscure the chance for someone with profound intellectual disability to communicate, or possibly irritate the person to the extent that the noise may induce the person to engage in challenging behaviour. Kirsten explained how the app worked and how it might be used to identify and address the problem of excessive or unpleasant background noise.

Ireland was well represented at the conference, notably by Professor Mary McCarron who delivered the Wednesday afternoon plenary. She spoke of the Intellectual Disability Supplement [IDS] to the Irish Longitudinal Ageing study [TILDA]. The IDS supplement seeks to replicate measures carried out on the general population regarding health, social connectedness, lifestyle and many other measures over a ten-year period. Mary reported on the findings of the study so far, some of which noted that older people with intellectual disability tend to socialise mostly with peers or with staff, rather than in the community. They smoke less than their non-disabled peers and they also exercise less. Interestingly she noted that street signage and feeling unsafe were difficulties for people with mild intellectual disability, while physical access and footpath design were problematic for those with physical disability.

There were many other presenters from Ireland, including Deirdre Corby who presented on how to analyse interviews with people with intellectual disability in order to bring out their authentic voice. Phillip Dodd spoke on risk factors for suicide in people with intellectual disability; Suzanne Guerin presented on bereavement in people with intellectual disability, and Fiona Keogh discussed implementing personalised services in Ireland. My own presentations were concerned with developing and evaluating systems-change in services for people with intellectual disability.

All in all, I was struck by the immense variety of research and thought that is being devoted to developing understanding of how people with intellectual disability may be enabled to lead lives that are satisfying for them. I was also struck by the small amount of participation that I saw of people with intellectual disability themselves and by their families, perhaps the organisers might address this in future conferences.

At the end of the conference I joined a few friends for a beer in the Loos bar, a very atmospheric throwback to the days of Hemingway and Orson Welles. The chat was good, the beer was good and the barmen were rude. Well you can’t have everything can you?

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