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Practitioners and researchers have made progress, in recent years, in seeking the views of children and young people. Less progress has been made in seeking the views of young people with significant communication and/or cognitive impairments. Drawing on the experience of three research projects and one Best Value review, this article details the lessons learnt, and action required, in order to find out about the experiences of this important group of children and young people. Copyright © 2003 John Wiley & Sons, Ltd.

The social model of disability gives us the tools not only to challenge the discrimination and prejudice we face, but also to articulate the personal experience of impairment. Recognition of difference is therefore a key part of the assertion of our common humanity and of an ethics of care that promotes our human rights.

There are significant differences between the concept of social exclusion adopted by the mainstream policy agenda and what social exclusion means to young disabled people, particularly those with high levels of support needs. Currently, the experiences and concerns of this group are not being heard in the arenas where policies are developed. The silence about their experiences masks an assumption that, to have high levels of support needs, means dependency and exclusion are inevitable. It is unlikely, therefore, that current initiatives to tackle social exclusion will address the experiences of these young disabled people as they grow into adulthood. In contrast, a human rights agenda offers greater opportunities to challenge the way young disabled people with high levels of support needs are 'shut out' from society.

This paper challenges the notion of "care", arguing that people who need support in their daily lives have been constructed as "dependent people". Instead, the author argues, if we want to empower people we must learn from the Independent Living Movement, from the people who struggled against segregation and insisted that access to personal assistance over which they have control is a civil rights issue. The paper takes issue with Clare Ungerson's perspective on the new direct payments legislation. This legislation is an important stage in the achievements of a civil rights movement and social researchers have a moral responsibility to collaborate with this movement in any work which they develop on issues which are not of mere academic interest but which concern people's rights to choice and control in their lives.