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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.

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.

Valuing People Now (DH, 2009) recognises that some people, particularly those with complex needs, have been missing out. It has made ‘including everyone’ a priority for the next three years. With reference to Tom's story, this paper will consider the reasons why people with profound and multiple learning disabilities (PMLD) remain among the most marginalised people in society today, what has changed since Valuing People (DH, 2001) and what needs to change in the next three years of delivering Valuing People Now (DH, 2009) if we are to rise to the challenge of ‘enabling extraordinary people to live ordinary lives’ (McConkey, 1998).

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 article describes the changes in the population of people with learning disabilities in Sheffield and the associated demand for specialist learning disability services, primary and acute health services and the wider public realm. It comments particularly on people with the most complex needs. The study to produce this data was in two parts: an analysis of changes in the overall number of people with a learning disability which included a projection of how the number might change over the next ten years, and an analysis of the health and support needs of young people with profound and multiple learning disabilities (PMLD), and how these might change in the future. The findings are compelling. The overall number of people with a learning disability in Sheffield increased by 25% in the 10 years from 1998 to 2008, the number of children and young people with a learning disability increased by nearly 120% and young people with PMLD were found to have an unprecedented level of health and social care need, which will increase further as they enter adulthood. The implications of the findings are discussed and suggestions for further research are offered.

Quality of life and quality of care have become dominant themes in planning and evaluating services for persons with learning disabilities. There are, however, few conceptual models and assessment instruments that are geared to people with profound and multiple learning disabilities. This article presents an ongoing research project aimed at developing and implementing a valid and reliable procedure for evaluating the quality of life of people with profound and multiple learning disabilities in several European countries. This objective will be realised in three subsequent stages, each of which is divided into several steps. The research project presented has the potential to develop theory as well as good practice in the care of people with profound and multiple learning disabilities.

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.