Contents

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

1 Information And Why It Is Important

1.1 In 1977 the National Consumer Council described the right to information and advice as an irrevocable right of citizenship (1). Information empowers citizens in three ways:

• by enabling them to participate in the democratic process, for example by electing an MP or member of a school board;
• by enabling them to claim their rights and entitlements as citizens and as consumers; and
• by enabling them to take responsibility for the quality of their own life.

1.2 This right has been increasingly recognised both in legislation and in the development of information and advice services in the voluntary sector, with these services receiving funding from local authorities, central government and health boards. One feature of this development has been the creation alongside general information and advice agencies, such as citizens advice bureaux, of more specialised services, either dealing with a particular kind of advice, eg consumer advice or housing advice, or to meet the needs of a particular group. The setting up of a working group on the delivery of information as part of the International Year of Disabled People recognised a distinct need for information services for disabled people. This group became the National Information Forum which works for the improvement of information for disabled people. Disablement Information and Advice Lines (DIALs) began to develop in the 1980s.

1.3 Local authorities and health boards have in recent years been required by legislation to provide information about their services to certain categories of people, including disabled people. They must also provide information about other relevant services of which they are aware.

1.4 In 1991 the government launched the Citizen's Charter initiative to make public services more answerable to consumers. The right to comprehensive and accurate information about services is an important element of the Citizen's Charter. As part of the Citizen's Charter initiative the Central Office of Information produced The Informability Guide in 1994 to promote good practice in ensuring that information is accessible to as wide an audience as possible, including people with literacy problems, sensory impairment or learning difficulties. The guide looks at different categories of impairment and describes the various media which can best be used to provide information. The Guide encourages information providers to consider accessibility at the start of every information project. The government also published in 1994 The Citizen's Charter and People with Disabilities, a checklist, to be used together with the Informability Guide. The checklist considers each of the 6 charter principles (setting standards; information and openness; choice and consultation; courtesy and helpfulness; putting things right; value for money) and the particular considerations which might apply in relation to disabled people.

1.5 Disabled people need information about all the same sorts of things as other people.

"It is essential to remember that disabled people need much the same amount and type of information as everyone else. They too are consumers, employers, parents, drivers, holiday-makers. The common attitude that disabled people need only be addressed when the message relates to health or social service matters is clearly wrong, and patronising"(2)

In addition there is information which can be called "disability information" which may be information about disability benefits, about independent living, about the services available for disabled people, about aids and equipment, self help groups, or the effects of a disabling condition.

1.6 It is important to differentiate between information, advice and advocacy, and to distinguish situations in which each is required, and to be specific about the level of service being offered.

“Information only becomes useful - and enabling - when it is selected for appropriateness and presented in a form the recipient can understand. Packaged like this it is called something else - advice”. (3)

Not all agencies provide the same type of service, and there is clearly a need for a variety of levels of information and advice. Libraries may well have an important role to play in improving information services, but they do not offer advice.

Many organisations offer information and advice, from the Benefits Agency, through service providers in the statutory sector, to citizens advice bureaux and community based information and advice projects. Sometimes it is important that independent information and advice is available, for instance if someone wants to appeal against a decision by a service provider in the statutory sector.

If barriers to services remain despite relevant information and advice having been given, there may also be a need for further support in the form of advocacy. In addition some people will have a particular need for advocacy, including children, those with learning disabilities and, in some circumstances, people from ethnic minority groups. Highland Community Care Forum has set up a Highlands Advocacy Project after finding that disabled people in Highland Region are "disempowered and disenfranchised". Individual advocacy was considered as the first step to empowering people to speak about their needs.

Some agencies which offer information and advice are unable to offer advocacy, for example the Benefits Agency.

1.7 As well as disabled people and their carers, whose position is described in the following section, various categories of service providers need disability information to do their jobs properly. These include, for example, housing, education, and welfare rights officers.

1.8 Conclusion

The importance of information has been increasingly accepted. At central government level this is reflected in the Citizen's Charter initiative. At local level there is a statutory obligation to provide information to certain categories of service user. Within the voluntary sector there has been a steady growth and development of information and advice agencies, some of them catering specifically for the needs of disabled people. While there is undoubtedly a great deal of information being produced, whether about community facilities, residential homes, schools, hospitals or benefits, it is less clear whether people are receiving the information they need, when they need it, and in a form in which they can understand it. The more information is produced, the more important it becomes that people know where to find that information, and where to get advice about its implications for them. It is also important to be clear that information and advice are a means to an end. It may sometimes be a difficult decision how to allocate funds between direct service provision and information about services, but this should not be used as an excuse for poor or inadequate information.