This article is based on a three‐year research project designed to improve the quality of life of people with profound and complex learning difficulties, particularly during periods of transition. Following a survey of post‐school opportunities, the project adopted an action research approach in four case study sites. The project concluded that it was important not only to support transitions but also to enable individuals to influence and direct change in their own lives. Commitment to increasing local opportunities, combined with a focus on staff development, is fundamental to enhancing the quality of the lives of people with profound and complex learning difficulties and those who support them.
Increasingly in recent years, the involvement of disabled people as co-researchers has been regarded as 'good practice'. This has been informed by growing participatory and emancipatory research paradigms as well as user-focused policy imperatives. The benefits of these shifts apply to the research itself (improved definition, direction, applicability and impact), to non-disabled researchers (personal growth and enhanced understanding of the reflexive research process), to people with disabilities involved as researchers or collaborators (personal growth and enhanced opportunities), and (if externally funded) to the funder whose ways of operating are likely to be challenged profoundly. In this paper, Ann Lewis, Sarah Parsons and Christopher Robertson (based at the University of Birmingham), Anthony Feiler, Beth Tarleton and Debby Watson (based at the University of Bristol) and Richard Byers, Jill Davies, Ann Fergusson and Claire Marvin (based at the University of Cambridge) discuss the work of three independent research teams carrying out concurrent projects. The authors share their experiences of trying to take seriously the participation of disabled people in research. All three projects were informed, to a significant degree, by their respective reference groups of disabled people. The work of these groups in each of the three projects is outlined and then discussed in relation to five common themes: formal contracts with members of reference groups; considerations concerning drawing on an established reference group; planning for reference group involvement; style of reference group involvement; and building on good practice.
Richard Byers, an independent consultant on curriculum development for pupils with learning difficulties, and a part‐time lecturer in special educational needs at the University of Cambridge School of Education, considers the effectiveness of the National Literacy Strategy and the relevance of recent guidance.
This article reports on part one of a three‐part national survey of provision for pupils aged 14 and older, in England and Wales, who have profound and complex learning difficulties. The survey is part of the Enhancing the Quality of Life (EqoL), a three‐year research project jointly awarded to Skill: the National Bureau for Students with Disabilities, and the University of Cambridge School of Education. The aim of the project is to construct a framework for learning which will support improvements in the quality of life for these young people. It is funded by the National Lottery Charities Board.
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