When caring for people with a severe or moderate intellectual disability and behaviour that is difficult to understand, situations can regularly come to a standstill. Although specific methodologies and protocols have been developed, and care professionals often work with incredible perseverance, it does not always happen that one can help the person concerned in a satisfactory manner. Is it time to try something totally different?
Is it perhaps time to make use of skills from outsiders? To research this question the Centre for Consultation and Expertise together with the VU Medical Centre Dept. of Medical Humanities, the University for Humanistic Studies, Belangenorganisatie KANSPLUS , 7 care organizations, educational programs for Social Work and Nursing and the educational institution for doctors for people with intellectual disabilities formed a 3 year cooperative work relationship.
Fourteen people without healthcare experience – but with relevant knowledge and other life experience – started as outsider-researchers in 7 care organizations. Each of them accompanies a case regarding one protagonist with behaviour that is difficult to comprehend, for half a day for two years. They connect to the situation and the people involved by observing and participating long-term. When the opportunity arises, they will offer their ideas and opinions. During the whole process they will communicate their observations and experiences to the coordinating researchers. If possible care givers in training will also be involved with these 14 cases.
The main question of course is: what will this long term collaboration and exchange produce? Will there be knowledge and skills interwoven from the outsider-researchers in the case, so the quality of life of the 14 main people will be improved? And how can we use what we learn from WAVE and apply this to other care and educational settings?