The same as you? 2000-2012: Consultation Report

Introduction

The same as you? (SAY) (Scottish Executive, 2000) was launched by the Scottish Executive in May 2000 and reviewed the services then available to people with learning disabilities and people on the autism spectrum. It said that people with learning disabilities had the right to be included in, and contribute to, society, to have a voice, and to have access, with their families, to support to live the life of their choosing. It contained 29 recommendations intended to drive a change programme to improve services.

Note on language

Throughout this report we use the term 'learning disability'. We recognise that some people prefer the term 'learning difficulty' and this is the term used by People First (Scotland), the national self-advocacy organisation.

We have used the term 'people on the autism spectrum' but recognise that some people will prefer a different term. Some people with learning disabilities are also on the autism spectrum. However, people on the autism spectrum do not necessarily have a learning disability.

Evidence

In 2010 the Scottish Government set up an Evaluation Team to review the evidence on progress that had been made since The same as you? and the challenges that remain. It has produced 3 reports:

• an Evidence Scoping Paper (Trew, 2010) - summarises the published evidence on progress on the 29 SAY recommendations
• a Health Scoping Paper (Allan et al, 2012) - reviews the health needs of people with learning disabilities and developments to improve their health. It has an appendix about parents with learning disabilities (People First (Scotland) Parents Group, 2012)
• an Evaluation Report (Curtice and Trew, 2012) - reports the results of face-to-face interviews with people with learning disabilities and family carers.

This consultation report summarises the findings of all these reports. The full reports can be read at www.scld.org.uk/SAYevaluation

The consultation

The purpose of this consultation report is to summarise the evidence which the Evaluation Team has gathered about the progress on The same as you? from published evidence and from face-to-face interviews with people with learning disabilities and family carers about their lives. This report summarises that evidence.

Through the consultation you now have an opportunity to comment on the findings and to share your own experiences and views. The Scottish Government wants to know if you agree with the findings from the evaluation, what your experience can tell us about how to improve the lives of people with learning disabilities and their families and what you think are the most important things that need to be done next. The accompanying consultation questionnaire explains how you can take part.

What will happen next

The Scottish Government will analyse all the comments from the evaluation and publish a report on them. It will set up a National Strategy Group which will look at the findings from the evaluation and the comments made during the consultation. From these it will develop a new strategy and an action plan to show what needs to be done next to improve the lives of people with learning disabilities and their families.

Evaluation methods and sample

The purpose of the evaluation was to find out whether people with learning disabilities and family carers were experiencing the changes that The same as you? had tried to bring about. It was decided to interview 50 people with learning disabilities and 50 family carers in 4 different areas of Scotland. The interview schedule for people with learning disabilities was based on The same as you? and focused primarily on people's lives. The carer's interview asked about the person they supported, their experiences of caring and finally, their views and opinions. The data was analysed both qualitatively and quantitatively.

eSAY, the national dataset on people with learning disabilities¹, was used to define the sample characteristics. Local authorities then sent out invitations to people with learning disabilities using accessible information sheets. Only when someone agreed to take part were their details passed to the interview team. Family carers were identified largely through carer groups. Interviews took place where the person wished it, usually their own home. For the interviews with people with learning disabilities there were usually 2 interviewers, one of them a researcher with learning disabilities. Consent was obtained before any interview took place. Interviews took place in the 4 research areas between February and May 2011.