Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Improvement Through Involvement:
How can the views of young disabled people and their parents
best inform education research, policy and planning?

Experiences of disabled students and their families (Phase 1) 1

Christopher Robertson [Ann Lewis and Sarah Parsons] 2
School of Education, The University of Birmingham, Edgbaston, Birmingham, B15 2TT
c.m.robertson@bham.ac.uk

The research project that this paper refers to was funded by the Disability Rights Commission (DRC)
and undertaken between August 2004 and March 2005, by a team based at the University of Birmingham

Introduction

The project remit was to explore the educational experiences of disabled students and their families. This encompassed identifying [broadly] their concerns and priorities but also, importantly, identifying and trialling appropriate research methodologies. This latter focus of the research, one concerned with the identification of methods that are both effective and inclusive, was considered to be central to the first phase of a longer project. A second phase will focus on the application of methods and on a more detailed exploration of the educational experiences of disabled students and their families. This is considered to be particularly important in the light of developments in disability equality policy, and their specific application to education (for further information on these developments please refer to this workshop’s parallel paper presented by Louca-Mai Wilson and Lisa Boardman)

This paper focuses on Phase 1 of the research but considers issues that a further phase might take account of (Phase 2).

Research design

The purposive research design was in two parts. Part 1 incorporated three approaches focused on child/family oriented work in two Local Education Authorities [LEAs] in England:

• Researchers made contact with children, young people and families through a range of LEA professional officer contacts. These provided access to schools and, importantly, links to a cross-section of relevant families. 29 children/young people [spanning disability, age group and provision] were subsequently involved in in-depth individual or small group interviews.
• Students attending a specialist further education college with a national recruitment, were contacted directly through the college principal. 8 students were subsequently involved in in-depth small group interviews.
•  A less formal purposive strategy was used to contact relevant families in another LEA. Although initial contact was made through an LEA consultation group, the authority was not involved in any way thereafter. Other family and support groups, children’s support groups and a hospital service for children with medical needs were also contacted with a view to longer-term involvement in the project. 8 families were subsequently involved in in-depth small group interviews.

Part 2 focused on survey work with national e-based samples of parents/carers of children/young people with disabilities. This survey was designed to elicit factual information about experiences as well as ratings of perceptions about autonomy, empowerment, inclusion and identity. The e-form of the survey was made accessible to 13 web-based organisations through recommended contacts and various informal researcher links. Some additional survey participants were recruited via Part 1 [see (1) and (3) above] and responded, according to preference, via a paper-based version of the survey or structured telephone interviews. The survey generated replies from 157 respondents in total, spanning England, Wales and Scotland as well as crossing disability groupings. Open ended questions elicited very full responses which amplified the quantitative survey data.

Summary findings: themes associated with disability

Issues concerning disability are discussed under the main themes in the final research report (Lewis, Robertson and Parsons, 2005), arising through the research process, including discussions with project Steering Group: autonomy and empowerment, inclusion, and identity. We found a complex pattern of negative and positive experiences. These are outlined in brief below.

There are substantial issues to be addressed around the ‘hidden economy’ of disability/special needs encompassing both home education specifically and other parent-supplied provision. Some parents of disabled children are acting as very vigorous individual campaigners on their children’s behalf and invest an enormous amount of time and effort in this activity. For a significant minority of parents/carers of disabled children, education at home is regarded as the only satisfactory provision at present.

The role of voluntary groups emerged as very important in supporting, and providing information to, parents and carers [not only those parents whose views were recruited through such groups].

Related to this, in general, there was a reported paucity of community support. An exception tended to be looked after children, whose carers often had strong and active links with a local church, and took the child to church-based activities. However as numbers of disabled looked after children were inevitably small, caution is needed about the generalisability of this finding.

There are some hints that there may be systematic intra-GB differences which warrant further investigation. Given possible systematic differences between England, Wales and Scotland concerning disability/SEN policy and provision, phase 2 needs to include intra-GB work including systematic scrutiny of survey and case study. An initial route in would be through [eg] e-surveys to relevant groups [see below] supplemented by child-based case studies [eg 4 per region].

A major theme emerged around disabled children’s resilience: specifically, how this is fostered or hampered across individual, inter-personal, school, college, family and community/cultural contexts. Resilience is tested and/or strengthened at times of transition so transitional experiences have a particular importance, and salience, for children/young people and theirparents/carers. That salience emerged, for children, young people and their parents, both in reported events and in hopes/fears for the future.

Thus there is a need to ascertain systematically what resources are available to disabled children and their families at times of transition. Following from this, exemplars of good practice might be identified [eg through child-based case studies] with a view to developing and implementing policy in this context.

There may be systematic differences between parents’ and carers’ views but numbers were too small in phase 1 to be confident about possible differences. It was noted by some parents in the telephone interviews that looked after children benefited from additional support [eg an independent advisor] at transition, not experienced by other children.

Differences by social class/ethnic minority may be significant. However, further work is required to test this and care is needed not to extrapolate findings from particular groups in ways that over-generalise. It may be outside the scope of phase 2 to do this unless it is an explicit and prime focus.

Summary recommendations: sampling and methodology

The research findings identify specific issues concerning research sampling and methodology. These focus on sampling, ethics, sensitivities around the use of the term disability [labelling], issues of control in the research process, and the use of research resources.

The e-survey was very effective in eliciting responses from the target groups, albeit in a relatively serendipitous way. A Phase 2 might usefully capitalise on the experiences gained of e-survey design, development and analyses by a wider and more systematic use of an e-survey through collaborative work with a range of relevant, neutral, GB-wide groups. This would need to be supplemented with a method designed to reach parent/carer groups who do not regularly use the internet; eg via telephone interviews, and possibly contacted via DRC colleagues in the regions.

The language of disability/SEN was found difficult or incomprehensible for a significant sub-group of parents. A Phase 2 would need to bear these potential difficulties in mind and respond accordingly in planning sampling and methods.

A Phase 2 might usefully involve case studies [eg a small number of children/young people in each of 4 GB regions; urban England, rural England, Wales, Scotland] to explore in depth factors associated with resilience with disabled children/young people acting as co-researchers and ‘snowballing’ methods/samples [to include individual, inter personal, family and community/cultural factors]. The aim would be to both illuminate policy/provision and to provide some exemplars of effective practice.

Individuals and groups involved in Phase 1 could be explicitly involved in Phase 2 in piloting and development work and/or to meet specific criteria for inclusion in Phase 2 [eg looked after children]. The great enthusiasm for continued involvement from virtually all Phase 1 participants suggests that this would be fruitful.

Considerable time is needed in the early stages of the project [a Phase 1 finding with implications for a Phase 2] for the researcher to understand which approaches will best help the child/young person to share views in an open and comfortable way.

This process is most meaningful, valid and ethically appropriate when disabled children and young people have continuing involvement, if possible - as co-researchers for at least part of the project, in the research process over time, in contrast to conventional ‘hit and run’ approaches to data collection. Close collaboration and continuing involvement of schools or voluntary groups are vital to sustain target recruitment and data collection. The longer-term involvement of parents would add a powerful further dimension of meaning to a second phase of research.

Some sub-groups [notably minority ethnic groups, looked after children, children educated at home, children in rural communities, children with mental health difficulties] were under-represented in both parts of phase 1. A Phase 2 might take an explicit focus on one such sub-group.

Modest tokens of recognition [such as book tokens] for the involvement in the project of disabled children and young people are appreciated.

Open methods of sampling raise potentially sensitive and possibly time-consuming issues about how to respond to particularly needy or persistent individuals some of whom may be pursuing grievances against particular organisations or individuals.

Summary conclusions and recommendations concerning potential approaches used with children and young people

A range of procedures and methods were used to identify ways in which children and young people preferred to be consulted about their educational experiences. The strengths and weaknesses of these are highlighted in the report, and the main conclusion drawn is that the flexible use of a portfolio of approaches is likely to be most valuable. This has implications both for how researchers are recruited and trained, and for the research design.

Phase 1 has shown that all children with disabilities or special needs can be included in meaningful and valid ways in sharing their views. However one fixed approach will not work for all children and young people. It is thus crucial that researchers [or others] seeking the views of disabled children have the skills and knowledge to access a range of appropriate methods and to be able to draw on this portfolio of methods flexibly and creatively in responding to individual children and young people. Given the required skills and attitudes researchers should start from a presumption that exploring the views of disabled children/young people in authentic, credible and trustworthy ways is achievable.

Some children and young people will need support workers to enable views to be shared. However this has to be considered sensitively and a balance struck between support and unwitting oppression; this, in turn, has implications for the selection and possible costing of such support workers within a project.

e-surveys have the potential to reach otherwise ‘hard-to access’ or cautious respondents such as adolescents with disabilities attending mainstream schools.

Other innovative approaches to seeking views warrant serious consideration. These might include the use of photography, video and creative group work using techniques drawing on the principles of graphic facilitation.

Summary conclusions: procedures and methods concerning parents/carers

Procedures and methods for consulting parent/family groups were evaluated. The use of telephone interviews, an e-survey tool and face-to-face group interviews all revealed strengths and weaknesses. Most importantly, they raised significant issues about sampling [who is reached] and how [accessibility of methods] to seek the views of ‘hard to reach’ families and communities.

Phase 1 has shown that parents and carers of disabled children wish to have, and to continue to have, their views heard. The strength of this came through very powerfully.

One fixed approach will not work for all and, as with exploring the views of disabled children and young people, researchers need to draw flexibly on a range of methods if a representative spectrum of views are to be obtained.

We suspect that the three methods of recruiting parent/carers [e-survey, families recruited via informal and voluntary regional networks, and families of children identified via LEA and school routes] produced slightly different types of sample reflecting systematically different populations. Phase 2 will need to either opt for a focus on one subset or explicitly plan methods and sampling to include a cross- section.

Some parents and carers may need emotional support in sharing views about what may have been very difficult decisions for them and their families.

Reference

Lewis, A., Robertson, C. and Parsons, S. (2005) Experiences of Disabled Students and their Families: Phase 1. Report to the Disability Rights Commission (Internal). London: DRC.

Acknowledgements

The research team, and well as wishing thank the children, young people, families and carers to shared their views so generously during the project, would also like to express their gratitude to colleagues at the DRC. The sharing of ideas between the funding body (DRC) and the research team was challenging, creative and fruitful.

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