Contents

Enabling Information: A report on improving access and raising standards in information services for disabled people and their carers in Scotland.

2 National Information

Local information providers have indicated in responses to the working group that they are often uncertain as to whether a particular measure applies in Scotland and that it is a time consuming process to find out. Scotland's separate legal system, education system, and administrative structure require that when we talk about national information we are talking about Scottish information.

2.1 The Scottish Dimension

In the disability information field there are several organisations operating at the UK level which are based in England and whose information products do not always make it clear whether the situation in Scotland is the same as that in England and Wales. This is the case for example with information coming from Royal Association for Disability and Rehabilitation (RADAR) and DIAL UK. Some national agencies do have separate Scottish organisations which operate independently from the UK organisation, for example Age Concern Scotland, or separate Scottish offices, such as the Carers National Association, and these should ensure that information produced for use in Scotland is accurate. Similarly there are Scottish organisations which are closely linked with organisations based in London, but which do not necessarily even share the same name, for instance Enable, formerly the Scottish Society for the Mentally Handicapped, and Mencap. Scottish organisations often experience difficulty when considerable press coverage is given to an English publication which fails to make clear that the situation is different in Scotland.

There are several national providers based in England which produce information which is useful in Scotland and does not require a separate Scottish organisation. For example, the Holiday Care Service provides information to enable people to choose a holiday suited to their needs. MAVIS, the Mobility Advice and Vehicle Information Service provides information and advice on all aspects of driving and disability. The Centre for Accessible Environments provides information and advice on the practicalities of providing an accessible environment.

2.1.1 Screening for Scottish relevance

Citizens Advice Scotland (the Scottish Association of Citizens Advice Bureaux) can be used as an example of how national information can be screened for Scottish relevance. All information produced by the National Association of Citizens Advice Bureaux is sent to Citizens Advice Scotland (CAS) for checking for Scottish relevance. If it applies in Scotland it is sent out to Scottish bureaux, clearly marked that it applies in England, Scotland, Wales and Northern Ireland. If it does not, CAS produces an equivalent item that will only apply to Scotland and is clearly marked "Scottish extent". The closest parallel to CAS in the disability field is DIAL Scotland which, on a smaller scale, attempts to screen information produced by DIAL UK and adds any other information which applies in Scotland. Nonetheless, because the information sent out by DIAL Scotland has been produced by DIAL UK, it is not always clear to local groups whether the situation in Scotland is identical to that in the rest of the UK. DIAL Scotland does not have the resources to provide the quality or range of information provided by CAS.

2.1.2 Level of service provided in Scotland

A different problem is sometimes experienced where a UK organisation is producing information which is equally applicable in Scotland but the organisation is not providing the same level of support in Scotland. For instance the Disability Alliance, which produces information which is applicable throughout the UK, is not able to provide training courses in Scotland. This gap is to some extent filled by other organisations, such as the Disablement Income Group (DIG) Scotland which provides a speaker who travels around Scotland, in tours organised and advertised by Disability Scotland, speaking about the operation of particular benefits and providing expert advice on benefit matters.

2.2 National information providers in Scotland

At national level there are several types of organisation providing information for disabled people. The National Disability Information Project (NDIP) identified 3 types of national disability information provider:

• Common disability information providers providing information aimed at all or a large proportion of disabled people, covering broad general subjects like aids or benefits. Examples would include Disability Scotland, DIAL, and the Disability Alliance.
• Specialist disability information providers such as the Special Educational Needs Database (SEND) or the Scottish Council for Spastics, which provide information aimed at a specific audience, relating to a specific disability or area.
• Generalist providers such as Citizens Advice Scotland (CAS), which provide information to local bureaux, much of which is as relevant to disabled people as to anyone else.

In addition, in the statutory sector, there is another category:

National service providers, which may provide information and advice primarily through local offices, for example the Employment Service which provides information and advice for people on obtaining or keeping a job through Disability Employment Advisers working within a Placing, Assessment and Counselling Team (PACT). Alternatively such organisations may provide information and advice through local offices as well as providing a centralised national service, for example the Benefits Enquiry Line which is run by the Benefits Agency to provide information and advice to disabled people about benefits.

2.3 How do national information providers operate?

At national level organisations collect or create information which they either provide directly to enquirers, whether members of the public, professionals or carers, or to local branches of their own organisation or to other locally based information and advice services. There are three main types of organisation:

• Organisations which supply data for dissemination by local groups, and do not provide a service directly to members of the public, for instance:
  • Citizens Advice Scotland
  • DIAL Scotland, which sends a monthly mailing to its 18 member groups in Scotland.
• Organisations which produce information for use by local groups but also directly to enquirers. Many national bodies operate in this way, for example:
  • Disability Scotland, which produces 26 print directories on a range of topics, a quarterly newsletter, and a computerised information service (DS Data) which includes 7 databases, by far the largest of which is on Aids and Equipment and which is produced by the Disabled Living Foundation and licensed to Disability Scotland for use in Scotland. DS Data also has a bulletin board facility, a For Sale and Wanted list, and E Mail. This service, the potential of which has not been fully realised, is available at 25 sites in Scotland, predominantly within social work departments because of the cost of subscribing to it (around £1500 a year). At present 14 of these sites are in Strathclyde Region in resource centres and in one organisation in the independent sector. There are five sites in Highland Region, four of them part of the social work department and the fifth at the Children in the Highlands Information Project (CHIP). Three Disabled Living Centres have DS Data, in Grampian, Lothian and Fife, and the remaining two sites are the social work department in Orkney and a resource centre in Moray. Disability Scotland also provides an enquiry service which received 8207 calls in 1993-94, and used to provide a mobile advice service which has now been discontinued.
  • The Health Education Board for Scotland (HEBS) provides a national information service covering various aspects of health, and including a database of self help and voluntary groups, HealthSearch Scotland. HEBS initially provided information through a telephone enquiry service but is increasingly moving towards providing data for other services to disseminate. Information is supplied on CD ROM, up-dated on a quarterly basis, and will be provided free of charge to agencies working in the health care field and at cost to other agencies.
  • Enable, which provides services for its 74 local groups as well as directly to members of the public. Enable produces a quarterly magazine, Newslink, which contains benefit updates as well as information about events, branch activities, details of campaigns and projects. A current awareness bulletin Infoline is produced 10 times a year, and Lawline, a quarterly legal bulletin, outlines any legal changes affecting people with learning disabilities. In addition factsheets, leaflets and posters are produced. The Information Service can be contacted by phone, letter or in person.
• Organisations which focus their information provision to the general public through a telephone helpline run on a national basis, for example the National Aids helpline, Saneline for people with a mental health problem, and the Arthritis Care helpline.

2.4 What is the focus of the information service?

The pattern of information provision at national level is complex. The overlap between different types of organisation in terms of the kind of information supplied can be demonstrated by the range of organisations involved, each of which caters for a different group of people:

• Organisations which focus on a particular type of impairment, eg the RNIB, Enable, Scottish Association for Mental Health, Spinal Injuries Scotland, RNID and the Scottish Association for the Deaf. Much of the information produced will be the same, for example about benefits, while some will be of specific interest to the client group, or produced in a format to meet the needs of that group.
• Organisations which attempt to meet the needs of a particular group, for instance elderly people or carers, which may include a wide variation in the level or nature of impairment. For example visual impairment and hearing loss are widely considered by elderly people to be an aspect of aging, rather than a disability.
• Organisations which concentrate on particular types of information, eg Benefits Enquiry Line and the Disability Alliance focus on information about benefits, while the Employment Service provides information about employment. Even the service provided by the common disability information providers such as Disability Scotland and DIAL Scotland differs in the focus on the type of information provided. Disability Scotland's DS Data appears to be particularly valued by occupational therapists dealing with physical impairment, and local information providers find the DIAL Scotland particularly useful, with its emphasis on current awareness and social aspects such as benefits entitlement. DIAL Scotland also circulates some information from Disability Scotland to the 18 affiliated DIAL groups in Scotland.

2.5 Definition of national information

National information providers are primarily involved in collecting and processing national information which is relevant to people wherever they live. The type of information which can most cost effectively be collected at national level and supplied to local agencies falls into several categories:

• information about other agencies operating at national or international level
• information about services which are the same throughout Scotland eg information about entitlement to benefits, rights in the employment or housing field, information about aids and equipment
• information about local services or facilities which it may be useful to have collected together at national level eg about holidays, transport or local stockists of aids and equipment
• current awareness information about new or forthcoming legislation and government policy
• current awareness information about research projects, articles etc.

2.6 Characteristics of national provision

The pattern of information provision at a national level in Scotland appears to be fragmented, with no regular forum for groups to share their experiences or discuss common problems. Such an informal forum has existed in the past and some organisations, for example Enable, have expressed a desire for a more formal re-establishment of such a forum.

At national level there is a lack of coordination, networking, or structured dialogue. Some information, eg equipment databases, are expensive and not user friendly. A concern was expressed that national organisations funded at least in part to provide a service to local organisations and service providers sometimes did not meet the standards which those local organisations themselves tried to meet. For example, the opening hours of national bodies may be more limited than those of the local service. The concern was expressed that national bodies sometimes did not do enough to publicise the existence of local groups. For instance it was felt that the Disabled Living Centres Council could do more to raise public awareness of the role and existence of disabled living centres in Scotland, and was constrained in promoting DLCs in Scotland as its present publicity budget comes from the Department of Health and so is limited to England. The range of disabilities has led to fragmented provision, and there is insufficient user involvement or control.

There are some problems experienced at local level which might be solved by changes in the way national organisations operate. These problems include:

• local agencies wasting time collecting national data;
• difficulties in accessing information about another part of the country;
• charging for information by national agencies;
• the lack of consistency at regional level;
• the fact that too much effort is spent in producing material, and not in distributing, updating, and sharing it; and
• competition between agencies for funding and possessiveness about information.

Both local and national agencies complain of under funding and short term funding.

2.7 Suggestions for improvement

Some suggestions which have been made in responses to the Working Group's statement include:

• the creation of new structures at national level to distribute material, issue regular bulletins or packs of material possibly on computer disc or CD ROM, or act as a centralised information brokerage system;
• the integration of local and national services;
• the improvement of dissemination by using a nationally recognised logo, or by the support at national level of local federations of information and advice givers;
• making greater use of technology; and
• the organising of national seminars or conferences.