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There are many definitions of profound and multiple learning disabilities. Most definitions include having a high degree of learning disability in conjunction with at least one other severe impairment, such as visual, auditory or physical impairments (Male, 1996; Ware, 1996; Lacey, 1998). Bunning (1997) adds that people with such disabilities are very reliant on others for support, including support in taking part in communicative events. Establishing reliable and consistent methods of communication may be exceptionally difficult (Florian et al, 2000). However, it is important to consider the individuality and extreme diversity of this population (Detheridge, 1997; Hogg, 1998), which includes variability in communication strengths and needs (Granlund & Olsson, 1999; McLean et al, 1996). Communication is often given little attention when services are planning ways of supporting individuals to participate, develop independence and make choices (McGill et al, 2000). While the individual's communication strengths and needs should remain central within any discussion, the significant others and the environment will also have an important influence. This article explores some of the communication issues experienced by people with profound and multiple learning disabilities and highlights the importance of the communication partnership within interventions.

There has been a policy for including pupils with severe, profound and multiple learning difficulties in mainstream schools in England since the 1980s. However, effective inclusive education has proved to be very difficult to achieve in practice. Currently, there is a mixed economy of special and mainstream schools offering inclusive education, and we argue that the place of education is less important than the quality of that education. Ideally, pupils with S/PMLD would be educated in their own local communities, alongside their non-disabled peers, but this situation is not yet established in English schools.

While the right to life, ‘personhood’, and the educability of people with profound and multiple learning disabilities are still under‐debated, service providers and research workers continue to extend the boundaries of expectation with respect to what such people can achieve. In this paper the messages of recent research are summarised and key references for fuller information suggested. The need to bring together such specialised knowledge in the framework of an ordinary life aimed at enhancing competence and quality of life is urged.

This paper addresses issues of concerns relating to the group whose needs in relation to sexuality have for too long been ignored, namely those with profound and multiple disabilities. The development of a specialist project to meet those needs is outlined, along with some of the difficulties and dilemmas faced along the way. The importance of staff training and support for staff to explore their own values and feelings towards the sexuality of this client group is emphasised.

The development of inclusive education, characterised by both universal momentum and geopolitical differences, has largely omitted children and young people with profound intellectual and multiple disabilities. For this group, access to educational opportunities at all has been slow to be won, and separation for ‘special care’ for their very high support needs is the norm. There have been advances in recognising the human rights and indeed humanity of people with the most profound intellectual disabilities, but the focus of educationalists has often been on how to foster and document fine-grained learning gains and on the specialist nature of the teaching they need. In this chapter, in contrast, the emphasis is on how the spirit of ‘Nothing about us without us’ can extend to children and young people with profound intellectual disabilities such that they are at the heart rather than periphery of the education and research process. The potential for belonging in education and research is illustrated through exploratory work on doing research inclusively with children with profound intellectual and multiple disabilities in two English special school classes. The starting point is seeking to know them from being with them in a particular way. The knowledge shared in the chapter is a mix of big picture state of the art overview and deep intersubjective knowledge/feeling created together with children with profound intellectual and multiple disabilities. The implications for future research in inclusion include the need to start from a different mindset in which belonging and reciprocity inform an asset-based approach.

Since 1999, one of the Special Interest Research Groups within the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has been on profound multiple disabilities (PMD). This group has stimulated a world‐wide discussion on education and support for such individuals. However, it is evident that there is some disagreement about who is included in this category. There has also been a debate about the applicability of various policy changes for people with PMD. A third topic of discussion has been the need for more research related to this target group and the related research priorities. This paper profiles and discusses these questions.

This paper reports the results of a review of services for adults with profound intellectual and multiple disabilities carried out as part of the implementation of Valuing People Now. Examples of good practice were identified which could be used to illustrate both what is possible and what policy obstacles have to be overcome. Families supported to make the most of the opportunities presented by the Government's ‘personalisation’ agenda were in general getting what they and their disabled family member needed and wanted. A number of specific obstacles were identified to which national and local government need to attend in order to enable more families to take up the new opportunities available.

This paper describes how one specialist learning disability health service has attempted to increase its focus on meeting the complex needs of people with profound learning disability (PLD) both with and without additional physical, sensory and medical impairment. Through individual assessment and intervention, carer consultation, training and supervision, research, and audit and advice to management, a multi‐disciplinary group has influenced the development of more proactive community teams for people with learning disability. This is in the context of both the publication of Signposts for Success (NHSE, 1998) and of a changing organisational culture which has embraced essential lifestyle planning, person‐centred teams, supported living and direct payments. The challenge remains of ring‐fencing sufficient resources (of time, skill and equipment), given the high‐profile and competing demands of people with milder learning disabilities but with complex mental health needs and/or challenging behaviour.