Scottish Government

2 METHODS

2.1 The fieldwork for this research project took place in two distinct phases, using a range of methods. These phases were:

1. Mapping - secondary data collection and an online survey.
2. Qualitative fieldwork - interviews and focus groups with disability organisations across Scotland.

2.2 The two phases are described in more detail below.

Mapping

2.3 The overall purpose of the mapping phase was to identify, categorise and map disability organisations across Scotland. There were two main methods used in this phase:

• Secondary data collection from existing directories to create a database of disability organisations
• An online survey of disability organisations to gather more detailed information

Creating a Database

2.4 A search was undertaken of 56 databases to identify disability organisations. This included ten national databases, for example those held by Inclusion Scotland, the Scottish Council for Voluntary Organisations and the Charities Register. In addition directories held by all 14 NHS Boards and all 32 local authorities in Scotland were searched.

2.5 From this search, a Master List of disability organisations was created. A search of a recently established NHS24 database then enabled checking, updating and adding to the Master List. The mapping process resulted in the identification of 1,400 disability organisations in Scotland. These have all been placed within a database designed specifically for this project and the required analysis.

2.6 Throughout the research project, organisations' details were verified and updated as contact was made with them.

Definitions - use of the term disability organisations

2.7 The disability sector in Scotland is large and varied. Each organisation fulfils more than one role, either nationally on a large scale or sometimes in a small way in a very specific local area. There is no single definition of disability or indeed of a 'disability organisation'. The categories used in this report are therefore practical ones, designed to move forward the process of setting out what is known about organisations of and for disabled people in Scotland. The primary function of the definitions are to provide a basis from which to assess the extent of representation available to disabled people, i.e. the extent to which organisations exist in different areas and for different impairments, and identify geographical and other gaps.

2.8 The use of terms such as 'disability' and 'disabled' can have significant sensitivities associated with them. For example a number of organisations of/for people with mental health conditions and illnesses reported that they did not consider themselves relevant to a 'disability' project. Categorisation, as always, is open to different interpretations, and most, if not all organisations do more than one thing for more than one group of people. The diverse nature of the sector in Scotland in terms of scale, remit, multiplicity of aims, clients, users - almost defies single word categories. The categories used in this mapping project may therefore not be 100% accurate. Moreover full information about all the identified organisations was not available.

2.9 The mapping process concentrated specifically upon organisations of or for people with the following impairments:

• Physical - including mobility-focused organisations, limb loss, spina bifida, brittle bone disease, scoliosis, Perthes disease
• Learning - including autism, downs syndrome, acquired brain injury
• Mental health
• Sensory - visual, hearing and speech impairments
• Pain related
• Progressive conditions - including multiple sclerosis, Huntington's muscular dystrophy and cystic fibrosis (but not dementia)

2.10 Also included are organisations of all disabled people, termed here as pan-disability organisations. Finally organisations set up by or for informal/unpaid carers of disabled people, including parents are on the database.

2.11 The database does not include organisations that are primarily focused upon:

• Illness
• Disease, such as stroke, diabetes and asthma
• Chronic conditions, apart from degenerative ones such as multiple sclerosis ( MS)
• Elderly people
• General health and well being

2.12 Also excluded are:

• Ceased charities and disbanded groups
• Local authority social work teams
• Local authority run day care services
• NHS teams
• Organisations relating to:
• General social inclusion
• General housing associations
• Educational establishments e.g. colleges and schools
• Commercial businesses
• Residential homes, unless primarily for respite

Online survey

2.13 Following creation of the Master List, each of the organisations on the list was contacted to request their participation in an online survey. Of the local organisations 10% did not have an email address. In these cases, a request was sent by post.

Table 2.1: How organisations were contacted

2.14 The survey asked for information on:

• size and structure ( e.g. whether stand-alone or part of a branch structure)
• location and spread of activity
• main types of activity or service
• client groups
• impairment focus
• proportion of board members and voting members who are disabled people
• how information was disseminated
• membership of networks

2.15 Overall 505 organisations took part in the survey. That is 36% of the 1,400 organisations identified during the mapping process. The results of the survey enabled mapping of organisations across Scotland according to a range of criteria and the identification of gaps in representation. It also provided the sampling frame for the next phase of the research.

Qualitative fieldwork

2.16 The overall purpose of the qualitative fieldwork was to explore to the capacity of disability organisations to engage with public authorities. The findings are reported in The capacity of disability organisations to engage with public authorities, December 2009. This was achieved by a combination of focus groups, face-to-face interviews and telephone interviews with a range of both national and local disability organisations across Scotland.

National Organisations

2.17 At the time of sampling for phase 2, the Master List included 215 disability organisations in Scotland with a national remit. The research team drew up a list of nine national organisations to be interviewed which represented the main impairment specific bodies in Scotland. In addition two key disability network/forum organisations - Inclusion Scotland and the Scottish Disability Equality Forum were interviewed.

2.18 All other national organisations on the master list were invited to participate in a group discussion. These were held in Edinburgh and Glasgow as nearly all national disability organisations are based in the central belt.

2.19 A total of 41 national disability organisations in Scotland contributed to the fieldwork, of which 13 were interviewed and 28 took part in a group discussion. Overall 20% of all national organisations took part in the phase 2 fieldwork.

Local Organisations

2.20 The Master List identified (at the time of sampling) over 800 local disability organisations. In order to make the research task manageable and to obtain a comprehensive picture within local areas, the research team selected five geographic areas of Scotland. These were:

• Aberdeen City
• East Renfrewshire
• Edinburgh City
• Highland
• Lothians - East, Mid and West Lothian

2.21 These specific locations were chosen to reflect the distribution of the disabled population in Scotland. Just over 40 per cent of all adults in Scotland live in large urban areas. Disabled adults are slightly more likely to live in large urban areas (44 per cent) than those without a disability (40 per cent) ¹. The fieldwork reflects this distribution and is therefore weighted to more urban areas of Scotland. Specifically Highland and the Lothians were chosen as they have accessible small towns. That is small towns within a 30 minute drive of a population of 10,000 and remote small towns, in particular areas within Highlands which are over a 30 minute drive to larger settlements/towns ².

2.22 Fieldwork was through a combination of face-to-face and telephone interviews and group discussions. The latter took place either as stand-alone meetings or as part of a series of research days held in Edinburgh, Inverness and Glasgow. The research days included presentations on disability-related topics and stalls hosted by disability organisations to try to attract maximum participation in the research by disability organisations.

2.23 Overall 27% of local organisations within the sample areas took part in the fieldwork, as shown in Table 2.2 below.

Table 2.2: Local organisations participating in phase 2 fieldwork

2.24 Appendix One lists all the organisations that contributed to the research by taking part in an interview or a group discussion.