ABSTRACT

Families caring for someone with profound and multiple learning disabilities (PMLD) are probably less concerned over issues of definitions and categories than many professionals. For them the technical problems of assessment rightly raised by Fryers (1984) have less meaning than the challenges they face on a day-to-day basis. These typically involve a total commitment to the wellbeing of their relative. Significantly, the American Association on Mental Retardation (AAMR), which for many years has grappled with issues of the definition of 'mental retardation', has suggested an approach to classification which converges with family carers' perceptions of their role. The AAMR now refers to the need for 'pervasive support' for people with what we are, here, referring to as 'profound and multiple learning disabilities' (see the Introduction for a fuller discussion). This approach emphasises not only the extent of needs, but also the input that will be required for the person with PMLD to develop to full potential. On the one hand, this will entail professional work by educators and day service staff, on the other, what is offered by family carers. In helping families to sustain such support, it is essential that we address the issue of how their needs can best to be met. A failure to do so may at worst lead to a breakdown in family support and at best result in a significantly poorer quality of life for the whole family.