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CHAPTER ONE: RESEARCH CONTEXT

INTRODUCTION

1.1 Since the 1960s, a body of literature has grown establishing that employment is a fundamental element, indeed an integral part of many people's ordinary lives and that opportunities for real paid jobs for people with learning disabilities is an essential part of empowering people to live ordinary lives (O'Bryan, 1991). Paid work remains the most culturally valued day or non-leisure activity and given a choice, many people with learning disabilities aspire to employment as a major life goal (Beyer et al, 2004; Scottish Executive, 2000; Riddell et al, 1999).

1.2 Employment has more potential than any other daytime occupation to ensure people with disabilities realise the goals of normalisation as expressed through O'Brien's 5 accomplishments:

"It places them within the community; offers a basis for the development of relationships with community members; demonstrates their ability to make a useful contribution; enhances their social status; and by the income it provides and in other ways gives them greater choice and control over their lives." (Dowson, 1998, pp15-16)

1.3 From the 1980s onwards, proponents of an ordinary life promoted work as offering a number of positive benefits. Such benefits were firmly grounded in the 'principles of normalisation' and the cultural meaning of work. Wolfensberger (1992) argued that employment in ordinary workplaces was an important determinant of the development and identity of adulthood, facilitating valued social roles for people who have been devalued and rejected by society. Critics of normalisation argue that it encourages and expects people to conform to the behaviours and attitudes of the dominant culture in society (Brown & Smith, 1992; Szivos, 1992). While normalisation has been influential, other factors such as the growing civil rights, self-determination and self-advocacy movements have also played a part in promoting employment and in the development of the 'supported employment' model.

1.4 A now vast body of literature about how having a job has changed the quality of disabled peoples' lives. In short, real jobs provide:

• Access to socially valued roles
• A purpose or structure to daily life
• Social links with the community
• Meaningful choices and opportunities
• A sense of personal future.

1.5 The drive towards employment in ordinary workplaces has in large part come about because people with disabilities have expressed, and continue to express, a preference for paid jobs (Racino et al, 1998; The Leighton Project, 1998; Beyer et al, 2004). However, there are still low numbers of people with severe disabilities or complex needs including people with ASD, accessing vocational and employment opportunities in the UK. Evidence shows that those who do, report many positive benefits (Weston 2002). A recent report published by the National Autistic Society (Barnard et al, 2001) suggested employment was "the single biggest issue or barrier" facing adults with ASD.

1.6 Recognising the significance of employment in the lives of people with learning disabilities and/or ASD, the Scottish Executive in The same as you? (2000), identified that "many people want a decent job" and want "to have friends at work". At the same time, there has been increasing interest by central government in the longstanding model of 'supported employment' as an effective way of tackling barriers to employment and promoting social inclusion not only for disabled people but for a number of other disadvantaged groups in society, such as young people leaving care, long term unemployed, minority ethnic groups, single parents and so on. To ensure people with learning disabilities and/or ASD access employment opportunities, The same as you? advocated:

• Including people with learning disabilities in ordinary work settings
• Helping people find jobs which offer the same pay, terms and conditions as employees doing the same kind of work
• Offering people the necessary support to be able to work on their own, with appropriate risk assessment and management
• Helping those with complex needs to find work and provide ongoing support where necessary (page 60)

1.7 An agenda for change was set out by the Scottish Executive's short life working group on employment for people with learning disabilities in the document, Working for a change? (2003). It stated that only one in 20 people with learning disabilities in Scotland were in any form of paid work. Despite such policy attention and the recent data collection by the Scottish Executive about employment opportunities for people with learning disabilities and/or ASD (Scottish Executive, 2004), a need for more detailed information was identified and this research commissioned to address the gaps.

STUDY AIMS

The Study

1.8 This research study was part of a programme of research commissioned by the Scottish Executive to monitor the implementation of The same as you? (Scottish Executive, 2000). As such, the study investigated the level and types of support currently provided to people with learning disabilities and/or ASD in both paid and unpaid jobs and identified elements of good practice, illustrating these wherever possible through examples. The Scottish Executive Health Department Health and Community Care Research Branch commissioned a team of independent researchers, to carry out the research. The study was completed within 8 months, commencing in January 2004 and completed by September 2004.

Aims & objectives

1.9 The main aims of the research were to map the nature and availability of initiatives and services to support people in Scotland with learning disabilities and/or ASD to gain and remain in employment; review the literature on good practice in 'supported employment'; identify examples of good practice from the mapping exercise'; and, explore the experiences of those in 'supported employment' and their families

1.10 Key objectives for the research as defined by the commissioners were to:

• Review the literature on 'supported employment', summarising main findings from key national and international documents and identifying gaps in information;
• Identify features of good practice from the literature;
• Identify the full range of organisations in Scotland offering support to people with learning disabilities and/or ASD in employment, noting the sector of agencies providing this support, the nature of the specialist support they offer and their funding arrangements;
• Identify the links these organisations have to other bodies and the contributions these bodies make
• Collect and analyse Partnership in Practice Agreements and community planning documentation in order to identify planning for employment
• Identify the number and characteristics of the people with learning disabilities and/or ASD who are supported by 'supported employment' organisations
• Identify any methods Local Authorities are using to evaluate employment support
• Identify from the mapping exercise examples of good practice in the support offered in gaining and maintaining employment
• Explore the views of people with learning disabilities and/or ASD who are employed and their families on what having a job means to them and the employment support available to them

RESEARCH METHODS

1.11 The study used both quantitative and qualitative methods and in summary involved:

1. A review of relevant literature mainly within the past 5 years highlighting aspects of good practice in 'supported employment'

2. Telephone interviews with 10 key stakeholders to explore strategic and contextual issues

3. A postal questionnaire survey of all organisations in Scotland providing employment support to people with learning disabilities and/or ASD

4. In-depth qualitative interviews to hear the stories and experiences of 15 individuals in 'supported employment', their families and employers

Literature Review

1.12 The literature review focused specifically on 'supported employment' research completed within the past 5 years ( i.e. since 1998), to identify aspects of best practice in 'supported employment' from national as well as international research, and in particular to consider research findings from Scotland. Relevant literature was searched using various strategies including initial consultation with key researchers in the UK and USA working in the field of 'supported employment' and learning disabilities; consultation with known academics and practitioners in the field of ASD; standard searches of library databases including BIDS, Applied Social Sciences Citation Index and Sociological Abstracts; Internet searches of key websites e.g. Norah Fry Research Centre, Joseph Rowntree Foundation, the Scottish Consortium for Learning Disabilities, BILD, Paradigm and others; specialist library resources e.g. Cardiff University Welsh Centre for Learning Disabilities and the National Autistic Society. A summary of the 2001 Partnership in Practice ( PIPs) agreements and Social Work Statistics Division report (2004) collating information about the implementation of The same as you? was also considered.

Stakeholder Interviews

1.13 In addition to exploring the understanding of issues at the level of employment support providers and users, we also drew on the views of those involved in strategic planning and development on the wider canvas. Telephone interviews were carried out with 10 stakeholders representing Careers Scotland, Scottish Enterprise, the Association of Directors of Social Work ( ADSW), the Health Service, ENABLE, the Disability Rights Commission ( DRC), the Scottish Union of Supported Employment ( SUSE), Jobcentre Plus, The National Autistic Society and the Department of Transport, Enterprise and Lifelong Learning. The topics explored through these interviews further examined insights gained by, and the recommendations of the short-life working group (Scottish Executive, 2003), which considered barriers to employment and useful mechanisms for bringing about improvements.

Postal Survey Questionnaire

1.14 A postal questionnaire survey was sent to 204 employment support providers in Scotland. Later on, 29 of these were removed from the database after we identified that despite receiving information to the contrary, they did not provide or were no longer providing employment support to the research target group. Another 8 respondents were deleted from the database as not relevant after consideration of their questionnaire responses. The questionnaire design took inspiration from earlier studies of 'supported employment' (Pozner & Hammond, 1992; Beyer et al, 1996), although this research was broader in its focus on employment support.

1.15 An initial list of organisations to approach was compiled using existing databases, specifically the membership database of SUSE, WAGE and with reference to other recent surveys including Arskey et al (2002). This was supplemented by requesting information from the 32 local authorities in Scotland and other key organisations about relevant services known to them. Contact information was checked by telephone prior to sending out the survey.

1.16 A pilot survey was conducted with 5 employment support agencies known to the Research Advisory Group, and the questionnaire modified as a result. Questionnaires were returned over a period of 8-10 weeks from the end of March to early June 2004. Agencies that had not responded were contacted by telephone and reminders sent out via email or post with a second copy of the questionnaire in May. Members of the Research Advisory Group also promoted the survey at the SUSE and Glasgow employment network meetings. Around 32% of responses were returned via email. Table 1.1 below shows a breakdown of the questionnaire response.

1.17 There were 77 returned questionnaires, 69 relevant responses representing a return rate of approximately 41% of relevant support providers identified for the research. Although we did not receive a response from key organisations such as the Scottish Society for Autism, the responses received do represent a broad cross-section of statutory and voluntary sector employment support providers and include Careers Scotland, Jobcentre Plus, 'supported employment' services, sheltered employment and other providers.

1.18 Most agencies did not routinely collect the type and level of detailed information sought through the questionnaire and many were returned partially completed. Further, for some 'supported employment' agencies, labelling people according to disability categories was felt to contradict the whole approach. There were numerous comments such as "we don't need to know people's disability to provide support". Riddell et al (2001) also found in relation to 'supported employment' in Scotland that employers and supported employees either did not associate with, or resisted the label 'learning disabilities'. Clearly this issue had implications for research that aimed to 'map' employment support to a specific target group, i.e. people with the label learning disabilities and/or ASD.

1.19 The response rate may have been affected by other recent data collection exercises, including the Social Work Services Inspectorate and Scottish Executive's Statistics Division data collection from local authorities in relation to The same as you?, as well as other UK-wide and Scottish research concerned with the employment of disabled people. While the majority of respondents supported the aims of the research, they emphasised the need for better coordination of information gathering and research at a national level.

Supported employees' stories

1.20 In-depth interviews explored 15 supported employees' experiences, as well as the perspectives of their families and employers. The majority of interviews were carried out by Research Associates who were people with learning disabilities recruited to work on the study alongside members of the research team. Other interviews, for practical reasons were carried out by telephone. The sample comprised 10 people with learning disabilities and 5 people with ASD (4 people with Aspergers Syndrome and 1 person with autism). The established approach of 'conversation with a purpose' was used to gather information across consistent headings while allowing scope for individuals to raise issues that were important to them. Interview schedules were sent out in advance so that interviewees had the opportunity to go over questions beforehand. All supported employees received a written copy of their interview. The purpose of interviews with families was to expand on information provided by employees, especially when employees had given brief answers, and secondly to find out about the impact of 'supported employment' on the family.

1.21 The final sample was drawn from 5 agencies, although 6 were contacted. These were exemplars of best practice in 'supported employment' as identified both through the literature review and from the mapping survey. It was however necessary to include one agency that did not fully meet best practice criteria in order that the sample included sufficient people with ASD. While every attempt was made to include individuals from minority ethnic communities and people with severe learning disabilities within the sample, none were identified from the 5 agencies. Agencies were asked specifically to identify people whose experience would promote the wider development of 'supported employment' through informing, encouraging and inspiring others. In addition, we came across a young person who was self employed but not supported by a 'supported employment' agency and decided to include his/her story in the research.

INVOLVING PEOPLE WITH LEARNING DISABILITIES IN THE RESEARCH

1.22 People with learning disabilities and/or ASD were as involved in the research as the research specification and timescale for the study allowed. First, Research Associates with learning disabilities were specifically recruited and paid to work as part of the research team. Interviews with employees, all but 3 with family members (which were telephone interviews) and all but one interview with the employers were carried out by a 2-person team - one Research Associate and one of the Researchers. Research Associates commented on draft interview questions, advised the team to send out the interview schedule in advance to help interviewees prepare, and were involved in identifying key themes from the data. Second, close attention was paid to establishing the best possible communication environment with each interviewee with learning disabilities and/or ASD.

Data analysis

1.23 Responses to the postal survey were entered into an Access database and transferred to SPSS for analysis. Interviews with supported employees, families, employers and other key stakeholders were handwritten or taped and typed out in full. The whole research team identified common themes and emerging patterns across the interview data. Research findings were discussed with the Research Advisory Group at its meeting in September 2004.

Structure of the report

1.24 Chapter 2 presents a review of recent literature on best practice in 'supported employment'. Chapter 3 then provides a summary of the key points from telephone interviews with 10 key stakeholders as part of the broader context. Chapter 4 discusses the findings from the postal survey of employment support providers across Scotland, and identifies some examples of good practice. Chapter 5 further explores the survey findings about people receiving employment support and the types of jobs there were in. Chapter 6 draws on the stories of 15 supported employees, their families and employers to highlight key themes and issues in relation to good practice. Finally, in Chapter 7, we draw out the main conclusions from the study and present some ideas for future developments.

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