These linked projects (2004-7), into the experiences of disabled pupils and their families, funded by the Disability Rights Commission (DRC), were carried out by a team from the University of Birmingham. The work was referenced to five main themes (identified by the DRC at the outset):

• independence and autonomy
• ambition and aspirations
• knowledge and assertion of rights
• experience of accessible/inaccessible educational environments, and
• attitudes.

Underlying these is an emphasis on the importance and validity of hearing directly from children and young people themselves. Thus the work meshes closely with initiatives worldwide concerning the recognition of children’s ‘voice’ in matters that concern them.

A summary of the work is available as a pdf download.

The following three research reports related to this work are available through the DRC website:

Lewis, A., Parsons, S and Robertson, C. (2007) My school, my family, my life: Telling it like it is. A study drawing on the experiences of disabled children, young people and their families in Great Britain in 2006. London: Disability Rights Commission/ Birmingham: University of Birmingham, School of Education.

This is the main report and focuses, in particular, on the case studies.

Lewis, A., Davison, I., Ellins, J., Parsons, S  and Robertson, C. (2006). Survey of parents and carers of disabled children and young people in Great Britain. Research report to Disability Rights Commission, June 2006. Birmingham: University of Birmingham, School of Education.

This covers the parent postal survey.

Lewis, A., Robertson, C., & Parsons, S. (2005). Experiences of Disabled Students and their Families. Phase 1. Research report to Disability Rights Commission, June 2005. Birmingham: University of Birmingham, School of Education.

This covers the methods, methodologies and sampling issues explored in the pilot work.

1a. Case studies: January 2006-September 2006

We carried out (GB-wide) in-depth individual (36 children/young people with disabilities and/or special needs) or group (3 groups) case studies from four of the six regions involved in the parent survey (see 2, below). Methods of data collection (building on approaches piloted in phase 1, see 3 below) included interviews with the children/ young people (using a range of support strategies and techniques), classroom observations, interviews with key school personnel (SENCO, class teacher, subject teacher, headteacher- as appropriate) and interviews with a sub-sample (15) of the parents/carers. The resultant rich case study data complemented the parent survey (2 below) and provided a sound basis for building on those findings.

The report on this work includes a summary and series of specific recommendations. These are referenced to children’s and young people’s:

• involvement in choices and decisions; their views and experiences of additional support, and involvement in extra-curricular activities, both within and outside school.
• experiences of getting to, and being at, school; as well as accessibility in relation to the wider community.
• views concerning disabled identity and language, inclusion, and involvement in school councils.
• reactions to the attitudes and behaviours of other children/young people, including those of friends both inside and outside of school; teachers and other professionals; their families and the wider community.
• attitudes to school/college, concerns about school transitions and longer term aspirations.

1b. Advisory groups of disabled children and young people (September 2005 - August 2006)

The involvement of several consultation groups of disabled people who provided both formative advice about the project and feedback about emerging findings were intrinsic to the research. That work, as well as the research team’s other direct experiences of advisory groups involving disabled people, provided the basis for our recommendations concerning a range of flexible approaches for advisory (or ‘reference’) groups in such projects.

The project involved a core advisory group of two disabled people plus the project team. This group met regularly face to face (approximately monthly over 12 months) plus more frequent (at least weekly) telephone and/or email contact; discussion was closely referenced to the progress of the project. In addition, three satellite advisory groups (one each in England, Scotland and Wales) met with one member of the research team on one or two occasions in their regions. The satellite advisory groups had remits reflecting their particular experience and expertise (for example, to bring to the fore the Scotland/ Wales perspectives and/ or post school transition issues).

The report on this work (internal to DRC) included a series of specific recommendations with reference to: recruitment of members to such research/project advisory groups, repercussions for group members (e.g. personal, geographical and financial), time and planning issues, ground rules, roles and the potential for complementary concurrent advisory groups.

Lewis, A., Niblett, L., Parsons, S., Robertson, C. and Sharpe, J. (2006) Advisory Groups of Disabled Children and Young People with Reference to Experiences of Disabled Children and their Families (Phase 2). Research report to Disability Rights Commission, August 2006. Birmingham: University of Birmingham, School of Education.

2. Survey of parents and carers of disabled children and young people in Great Britain (August 2005- April 2006)

Six geographical areas were selected to reflect a spread of GB regions: four in England (two urban, one urban/rural, one rural); one mixed urban/rural area in Wales and one urban area in Scotland. A sample of secondary, primary, special schools and colleges were identified in each of these regions and postal questionnaires were distributed, via these establishments, to parents/carers of pupils. (Note - by design this included many parents of children without formally designated special needs although the questionnaire explicitly focused on disability or special needs.) We received 1776 valid returns by 31 March 06. These were split across the three countries (England 79.3%, Scotland 6.8%, Wales 13.9%).

A method of disproportionate stratified sampling was used in order to target the survey at sufficient numbers of families within three strata. We had returns from entire cohorts of mainstream educational establishments (77.4%), parents of pupils on the school’s SEN register/record of need (8.7%) and entire cohorts in special schools (13.9%).

The report on this work contains a summary and series of specific recommendations. These include reference to issues concerning definitions and nature of disability, special educational needs and difficulties; choice and satisfaction with schools; awareness of the Disability Discrimination Act and special needs; and inclusivity and accessibility.

3. Pilot work (August 2004-March 2005)

Phase 1 focused on piloting sampling and methods to hear the views of 37 disabled children and young people and eight families across a wide spectrum of disabilities, ages and needs. This work also provided pointers to substantive issues and provided a strong grounding for the later work (see above).

Contacts for further information

Professor Ann Lewis
Tel: 0121 414 4822
Email: a.lewis@bham.ac.uk

Dee Fellows 
Tel: 0121 414 4834
Email: d.r.fellows@bham.ac.uk