Accessible summary• Listening to what young people with severe learning disabilities have to say about inclusion is important.• Researchers must be prepared to use a range of resources to facilitate communication.• Resources must be appropriate and familiar to the individual. SummaryThis paper describes the evaluation of a drama production which involved 6 young people with profound and complex learning needs and 23 pupils from a mainstream school. The young people worked together on the project for nearly 2 years. At the end of the project we wanted to find out what the young people with disabilities thought of the inclusion project. Very often, the thoughts of young people with learning disabilities are not included because professionals do not have the resources or experience to conduct the interviews. This paper explains how the interviews were arranged, what tools were used and finishes with two case studies which are examples of what the young people thought. This research demonstrates that young people with severe learning disabilities have important messages to tell us about their experiences of inclusion. This paper gives examples of how we can enable young people with severe learning disabilities to express their views.
Accessible summary Parents have told us what it is like to have a child with a diagnosis of foetal alcohol syndrome. Listening to parent views is very important because parents want professionals to understand the support they need. People do not know very much about foetal alcohol syndrome. It is important to help parents of children with a disability to make sure that the children and families get the help they need. Parents told us how they first knew their child had foetal alcohol syndrome, the problems they faced and how difficult they found it to get support. Summary Learning of a child’s disability can be a difficult time for any parent. Sensitive support is critical to ensuring parents understand the nature of the disability, the prognosis and services available to them. However, where the disability is not well understood, where professionals are not well informed and where pathways of care are not available, parents may be left feeling lonely, isolated and unable to cope. Foetal alcohol syndrome is a completely preventable cause of intellectual disability and is prevalent in all developing countries. Whilst research has focused on identification, diagnosis and epidemiology, understanding the psychosocial aspects of the impact of this disorder has been neglected resulting in a paucity of strategies to support parents. Understanding the needs of parents raising a child with foetal alcohol syndrome is central to providing well‐informed support for families. In this study, families shared their experiences of raising a child with foetal alcohol syndrome. These were then analysed using interpretative phenomenological analysis enabling themes to be identified which were core to understanding their journey.
In this article Carolyn Blackburn who is currently project officer for the Training and Development Agency for Schools and Teresa Whitehurst who is a research and development officer at Sunfield School in Worcestershire discuss how educationalists are being required to support an increasing number of children with new and emerging disabilities including Foetal Alcohol Spectrum Disorders (FASD) for which they may be ill equipped if knowledge and resources are not available. FASD is an umbrella term used to describe a range of intellectual and physical disabilities that may occur when alcohol is consumed by the mother during pregnancy. This may lead to learning difficulties in the areas of gross and fine motor control, social and emotional development, hyperactivity and attention disorders, understanding rules and cause and effect, receptive and expressive language, and problem solving and numeracy. Educating and caring for these children needs a unique approach that relies on reflective practice and adaptive teaching techniques. This article focuses on a collaborative project with Worcestershire Early Years entitled Building Bridges with Understanding. The project focused on raising awareness and increasing knowledge of FASD in early years practitioners to support children with a range of difficulties and provides access to a free downloadable resource pack.
The risk factors for young people with intellectual disabilities developing a mental health disorder are higher than those found in the general population, yet training is very rarely available to frontline staff. A recent study in the United Kingdom cited prevalence rates of mental ill health among adults with intellectual disabilities ranging from 35.2 to 40.9%, depending upon the sensitivity of the diagnostic tool used (Cooper et al., 2007). The ability to identify mental health problems is crucial to early intervention, but is particularly difficult when the symptoms of intellectual disability often mask emerging problems and confound differential diagnosis. The literature relating to mental health training focuses largely on changes in knowledge base and attitude, falling short of considering the primary focus of training—its impact upon practice and how this ultimately benefits people with intellectual disabilities. This study highlights the need for training, considers a training package provided to all frontline (direct care) staff in a residential school in the United Kingdom, catering to young people between the ages of 6 and 19 with severe intellectual disabilities, and investigates the impact of training upon practice and its influence upon the organization.
In this article Teresa Whitehurst and Amy Howells describe how pupils and staff from mainstream and special settings worked together on a project, resulting in a musical performance. They demonstrate at the outset that, even after several decades of ‘integration’ and then inclusion, there remains an attitudinal hurdle to overcome. Mainstream pupils in this study report feelings of fear, lack of preparation and alienation with regard to pupils with severe and c o m p l ex learning difficulties. The project in question prompted these pupils to significantly change their perceptions of their peers with learning difficulties, a process substantially assisted by the involvement of all children in the production of a school performance.
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