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Making a difference

15 March 2003

The Norah Fry Research Centre is one of the leading centres in the country for research into services for people with learning difficulties. Professor Linda Ward, Director of the Centre, talks about several aspects of its work.

Bristol University’s Norah Fry Research Centre takes its name from Norah Fry – one of the famous Quaker Fry family which included Elizabeth Fry, the prison reformer and Joseph Fry, founder of the chocolate company. Born in Bristol, Norah had an enduring interest in mental health issues and late in life she endowed a Chair at the University to focus on mental health.

In true Quaker spirit, Norah Fry was concerned to make a positive difference to the lives of those living in the society around her, particularly those who were disadvantaged. Research undertaken at the Centre which bears her name, continues this fine tradition. In practice, this means that its researchers not only need to carry out work which is methodologically robust, ethically sound and practically relevant, but they also need to consider how findings from their projects can be disseminated, in the hope that this will contribute to positive change in the lives of children and adults with learning difficulties (intellectual disability) and their families. Three projects recently completed at the Centre illustrate how this works in practice.

The transition to adulthood can be a difficult time for all young people and their families, but for those with learning difficulties there are a host of additional complexities. Under the Education Act 1993, all disabled youngsters are supposed to benefit from ‘transition planning’ from the age of 14 to smooth the process of leaving school. Bridging the Divide focused on the experiences of these young people and their families, and set out to establish whether legislation and guidance were, in practice, being followed.

The findings revealed a disturbing gap between legislation and official guidance, and the real experiences of people on the ground. For example, a fifth of youngsters in the study had left school without a transition plan. Similarly, almost half of them had had little or no involvement in the planning of their own future. For many, issues like the transfer to adult health or social services had still not been addressed by the time they left school and there were very few post-school options available, particularly in relation to housing and employment opportunities.

One key finding was the lack of easily accessible information for parents and young people about what future possibilities there might be. As a result, the researchers produced not only a report and a summary of findings, but also an information pack aimed at professionals and parents, and an illustrated leaflet for the young people themselves. Meanwhile, meetings have been set up with key officials to look at how the shortfalls revealed by the study can be addressed, and how improvements to practice can be made in the future.

The second project, Learning to Choose Staff, has similarly focused on practical change. In this case, a group of people with learning difficulties in Bristol approached staff at the Centre because they were concerned that they had no say in the appointment of staff who worked with them in their day centres and homes, but who had an enormous impact on their day-to-day lives. As a result, researchers at the Centre obtained funding to undertake research on how people with learning difficulties could be involved in the recruitment process. With a view to helping all those involved make progress in this area, two resource packs, a report and an illustrated, easy-to-understand magazine and audio tape were produced. But how easy would it be for practitioners (and people with learning difficulties) to implement the project’s findings and change their practice accordingly? The Joseph Rowntree Foundation’s concern to encourage the implementation in practice of research findings led to funding for a further phase of the project.

A key finding from this second phase was that generating and maintaining commitment was an essential foundation for developing initiatives to promote change and improve practice. When commitment was lost, challenged or eroded, even the best-planned initiatives were unable to flourish. By the end of the project, four of the five organisations involved had developed detailed plans for initiatives to promote user involvement in staff recruitment, and three had already implemented their plans at policy and/or practice level.

Our third project, Journey to Independence, launched its final publications last autumn. It focused on the highly topical issue of ‘direct payments’. Direct payments are a means by which disabled people, and others, can choose to receive a cash payment from their local authority with which to purchase support, instead of receiving community care services to which they are entitled. The Government sees direct payments as an important development in community care provision, but there are concerns about the low level of take-up by people with learning difficulties.

The project has produced a multiplicity of research outputs, including an accessible, illustrated information pack which gives practical help to people with learning difficulties in managing their life with direct payments. The needs of practitioners and policy makers are also not forgotten; indeed, a primary purpose of the project was to enable social services departments, policy makers and direct payments support schemes themselves to listen to the voices of people with learning difficulties.

Balancing the needs of all the different audiences for our research – including those who fund it – is a complex act. But it needs to be done, and done well, if the Centre is to continue its mission of doing high quality research which "makes a difference".

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