Search results

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 summarises recent work, commissioned by the Department of Health, which estimated the future need for health and social care services for adults with profound multiple learning disabilities (PMLD) in England. This estimation process involved four stages: identifying children with SEN associated with PMLD; adjusting for the effects of child mortality; estimating the number of adults with PMLD in England; and estimating net changes in the number of adults with PMLD in England. The overall findings suggest sustained and accelerating growth in the number of adults with PMLD in England over the time period 2009‐2026 and hence the need and demand for health and social care services for adults with PMLD.

This article focuses on people with complex needs and the impact of Valuing People and Valuing People Now on improving their lives and opportunities. It considers the current situation and challenges, where most people with complex needs have experienced disadvantage and have not seen as much improvement in opportunities as others. Health needs are covered elsewhere in this journal, and so this article looks at the remaining priorities in Valuing People Now: housing and employment. The key issues are explored and the Sustainable Hub for Innovative Employment for People with Complex Needs, established as a result of the Valuing People Now employment work, is described. It explores the lessons learnt so far and the challenges faced, with a summary of the next steps.

Bereavement and loss are key factors in poor emotional wellbeing among people with profound and multiple learning disabilities (PMLD). However, little attention has been drawn to this group in the grief and disability literature. The purpose of this paper is to make sense of bereavement and loss in people with PMLD, with reference to theoretical contributions to the field and studies of grief reactions.

A systematic review revealed 34 relevant published works. These were analysed for relevant contributions.

Three main types of theoretical contributions have been made; traditional grief theories, cognitive approaches and attachment-based perspectives. Although a limited number of case studies exist, a range of grief reactions have been reported in people with PMLD. Traditional grief theories and cognitive approaches are somewhat limited in making sense of grief responses in this group, while attachment-based perspectives may prove useful in providing theoretical and therapeutic direction.

Further research is required to more accurately describe the nature of relationships in people with PMLD.

Major contributions to the field point to the value of facilitating engagement with the grieving process, through communication around the loss and training for staff. In addition, attachment-based perspectives are offering routes for establishing therapeutic relationships that may help to resolve behavioural difficulties.

This paper provides an overview of the perspectives within bereavement and disability, drawing together clear theoretical frameworks for future research and practice.

Destructive changes in body shape can happen slowly over a long period of time and may affect any person who has difficulty moving efficiently, irrespective of diagnosis or age. Supporting the body in symmetrical supine lying has been found to protect and restore body shape, muscle tone and quality of life for people who would otherwise be left to become static in destructive lying postures. Those described as having complex and continuing health care needs or profound and multiple learning disabilities are likely to be at risk of developing changes in body shape. This article will consider predictable patterns of chest distortion and reduction of internal capacity of the abdomen and thorax with key characteristics for those supporting individuals at risk, non‐invasive measurement of body symmetry as a relevant outcome measure in the effort to protect body shape, the consequences for individuals, their families and service providers, positive feedback from families about the benefits of night positioning, the preventable nature of changes in body shape and the practical steps that may be taken to ensure the safety of the individual. Case studies will be presented which demonstrate that the body is a mobile structure which is vulnerable to distortion but also susceptible to restoration as long as the correct biomechanical forces are applied. It is proposed that therapeutic night positioning is an effective intervention which should be made available to those at risk of body shape distortion from an early age, or as a matter of urgency for those with late onset or temporary immobility.

The purpose of this paper is to provide a commentary on “An audit of an Intensive Interaction service”.

Drawing on the literature regarding other related person-centred approaches and clinical and research experience, an argument is made that people with profound intellectual and multiple disabilities are particularly at risk when service innovation does not account for their unique needs.

Practice and service models need to specifically account for the needs of people with profound intellectual and multiple disabilities.

The commentary draws attention to the importance of implementation and seeks to draw lessons from well established, service wide approaches for people with intellectual disabilities.

This paper aims to look forward to the next generation of policymaking on learning disability and recommends a unitary strategy covering all phases of life including childhood.

In this paper, the author addresses the policy gap between inclusion in ordinary (“mainstream”) schools and inclusion in ordinary adult life. The author asks why what has been accepted, at least in principle, for the adult two-thirds of the learning disabled population is still contested for the other, younger third. In the following sections, the author summarises the present discrepancy, compares the rights of children in general with those of people with learning disabilities and outlines the rationale for a 0-99 years focus in research and practice on learning disability, and for future government strategy to establish a 0-99 policy.

It is in the broad context of a unitary 0-99 years approach that policymaking must in future be addressed. The education of children is key to the success of their adult lives, and makes the policy of educating them together in ordinary schools (i.e. giving them from the start the “ordinary lives” that are the main goal of adult policy) an imperative.

The need to consider children’s rights in a general sense has not previously been applied to the field of policymaking for adults with learning disabilities.