INAUGURAL MEETING OF THE IASSID SPECIAL INTEREST GROUP IN PEOPLE WITH PROFOUND AND COMPLEX DISABILITIES

by Colin Griffiths

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Amsterdam, 20–21 March 2003
The International Association for the Scientific Study of Intellectual Disability, which meets collectively every four years, has established special interest groups which are open to IASSID members. Their function is primarily to develop and share knowledge among those professionals interested in particular specialisms in intellectual disability. The first meeting of the special interest group in people with profound and complex disabilities took place on 20–21 March in Amsterdam. I traveled to the meeting by car and spent the previous night in a small hotel on the edge of the Belgian city of Ghent. I went down to breakfast at half past six the next morning to find my fellow residents, most of whom were German building workers, glued to the television watching scenes of the first bombing of Baghdad. I was not sure this was a good omen for the meeting, and, sure enough, when I arrived at the conference, the participants from the USA and from Australia had cancelled on account of the war. But even with only the European members present, there were 35 teachers, psychologists, academics, and nurse (I was the only one) from The UK, Holland, Germany, Norway, Belgium and Ireland (again I was the only one)].

The deliberations were of great interest: James Hogg described service provision in Scotland and he told of the planned closure of all large residential centres over the next two years and the strong emphasis on inclusion that now characterises Scottish services. I felt a certain degree of envy until he also added that much residential accommodation in Scotland is currently provided in private nursing homes.

Carla Vlaskamp, from the University of Groningen, described day services for people with profound complex disabilities in the Netherlands. In her frank description, she suggested several deficiencies in the services:

  • Little day-service/residential communication
  • Lack of goal-directed activities
  • Mostly part-time staff in day services
  • Little account taken of client preferences in programme design
  • An average of 8 hours of day activity provided per week.
  • A lack of creativity by staff
  • An absence of knowledge of clients’ sensory disabilities.

I considered then that our services were maybe not bad by comparison. However, Carla did make the point that now they knew what the situation was like they were trying to improve things.

There was some discussion from researchers in Belgium about ongoing cross-European research to investigate quality-of-life issues for people with profound intellectual disability. And lastly there were two fascinating presentations that attempted to describe the interactions of teachers and students with profound disability. Some conferences seem to offer sterile presentations that are listened to in reverent silence and at which there is little or no engagement between audience and speakers. This was different, there was a healthy debate on nearly every subject and a wonderful exchange of views that seemed to leave everyone wiser than they had been before the conference.

As I headed out through the Friday evening traffic towards Rotterdam I reflected that I had been to many conferences over the years, but never to one at which participants had seemed so interested and committed to the people they were working with. It also seemed that because so little is known about people with multiple complex disabilities, a genuine exchange of views and knowledge took place as everybody tried to learn from everyone else. The group might be small in number, but despite the gloomy international situation that evening the future seemed bright.

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