The primary worldwide association for the study of intellectual disability is the International Association for the Scientific Study of Intellectual Disability. IASSID has numerous special interest groups, one of which is concerned with people with profound intellectual and multiple disability (PIMD). This group meets once a year and brings together researchers, practitioners and (one) parent who are interested in this group of people.
During 2005 the special interest group met in Bruges in Belgium from 6–8 October. Thirty-five participants representing Holland, Belgium, Sweden, Germany, Japan, Ireland, Scotland and England engaged in three days of very informative debate on a number of subjects.
First up was Juliet Goldbart who presented her research on communication with people with profound and multiple disabilities. Juliet explained that there are many different views of how we should look at communications of people in this group she emphasised that understanding what the other person is communicating is vital and that an important part of that is knowing whether the person is intending to tell you something or to get you to do something. She also suggested that we need to consider how we communicate—should we use approaches like intensive interaction, should we use augmentive technologies or various therapies? Ultimately the discussion returned to the importance of understanding the person’s non-verbal communications and how we need be sure that we are getting the right message.
On the second day discussion centred on Han Nakken’s description of the various different ‘treatment forms’ (approaches to intervention) that are available for people with PIMD. Han examined many therapeutic approaches and some that were well accepted and some that were less so. I was particularly interested to learn that the Dolmen-Delcato method of intense physical stimulation is still around, now operating under the title of BIBIC therapy. Many mainstream approaches such as Sherbourne method, sensory integration and Snoezelen were described. Han also touched on more unusual treatment forms, such as Hippo therapy and Dolphin therapy. The session made it clear that a lot of these treatment forms are of use with PIMD, but that they should be approached cautiously to be sure that they do no harm and also that they may be effective. It seemed that there was little evidence to suggest that many of the therapies were more effective than simply having someone engage in close teaching /interaction with the person. Subsequently the meeting looked at what are the best supports that can be offered to someone with PIMD. Bea Maes looked at research on this topic over the last ten years; she concluded that while different activity and social support programmes were used there was variable engagement with these by staff, leading to some positive and some less positive outcomes for service users. Issues such as staff training, service culture and the particular ways in which staff are deployed were highlighted as being of importance in the design of quality services.
The final day’s discussion examined staff attitudes and what types of staff were best suited to working with PIMD. The discussion centred around how difficult this work was at times and how important it was that staff should be well motivated and have ongoing training and education.
My impression was that there is so much to do in this area: because people with profound multiple disability are quite difficult to understand and interact with they have long been forgotten by mainstream researchers and practitioners, however that is no longer the case. Research and new interventions are clearly happening far more than in the past. One specific area of research that needs to be undertaken is the evaluation of interventions and treatment forms to see if they add to the quality of life of people with PIMD.
The last point which struck me was that only one parent was present. Ann Brown (who has previously written for Frontline) brought a vital perspective to the discussions. While listening to Ann it seemed to me that the voices of parents need to be raised at such scientific meetings so that a dialogue can be established between researchers, practitioners and service users or their representatives.
The special interest group will gather together again next August at IASSID Europe in Maastricht.