Contents

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

1 Fundamental Principles

The Working Group believes that it is important to start from ways in which the delivery and dissemination of information to disabled people can be improved at local level. Most of the information that most people want is local, and it has been shown that people want to get information and advice locally and also want information to be "wrapped in a person". The recent concern with information services for disabled people has arisen out of a concern with developments at local level, notably the extent to which local authorities are meeting their statutory duty, and the rapid but piecemeal development of services in the voluntary sector. The Citizen's Charter initiative underlines the importance of information about services, consultation with users, and quality standards. The introduction of community care has had the effect of focusing attention on the desirability of multi-agency working and collaboration between the independent and statutory sectors.

The Working Group considers that there is a great deal of agreement about the ingredients of a good information service, and many examples of good practice which can be drawn on. The principles described in this section should be the basis on which all information services are based, and in particular, the basis for the local information strategies which the Working Group considers would significantly improve the pattern and quality of information services at local level. The content of some of the standards described in section 3, below, are based on these principles.

1.1 The social model of disability

The social model of disability should be the basic philosophy underlying all information and advice services aimed at disabled people. The effect of adopting the social model of disability will be to focus attention on:

• how to remove barriers which limit access to information;
• how to provide a service which will enable people to access the goods and services to which they are entitled;
• how the service can help to overcome the barriers to those services, for instance by providing an advocacy service; and
• the importance of disability equality awareness training and race equality awareness training in reducing attitudinal barriers.

1.2 Services should be user-led and accountable to users

It is a fundamental principle that any service provided, whether by the voluntary or statutory sector, and whether at national or local level, should be planned and shaped so as to meet the needs of users of that service. The Citizen's Charter states that there should be regular consultation with those who use services. Users' views about services and their priorities for improving them should be taken into account. To achieve this goal it will be necessary to:

• find out what people need both by consulting users about the service they want, and by other means;
• ensure that mechanisms exist to continually feedback the views of users about the service provided; and
• involve disabled people and their carers in the management and delivery of the service.

The involvement of users is therefore vital at two stages - at the planning stage, and in the ongoing monitoring and evaluation of the service. In addition disabled people and their carers may seek some degree of control over the service, and the experience of NDIP is that the active involvement of disabled people has been critical in the success of information services and federations. The extent of the involvement of disabled people in managing services and as employees providing information and advice has grown considerably during the course of the project, and can be seen as a positive outcome of the project.

1.2.1 Users of disability information include not only disabled people themselves but also carers and service providers of various kinds. These groups will almost certainly have different needs and will certainly need to have information presented to them in different ways. In addition, local information services are themselves users of the services provided by national agencies, and national bodies will need to develop methods of consulting with local groups about their needs.

1.2.2 The involvement of disabled people, for instance in consultations about their service needs, may require the development of sensitive and effective ways of communicating, for instance with people with learning disabilities or children with special needs, and people from ethnic minority groups. Local access panels and organisations of disabled people may be useful sources of users for feedback on services.

1.2.3 An NDIP publication includes a set of guidelines to help people undertake research into the information needs of disabled people, drawing on the experience of pilot projects in Birmingham, Manchester, Oldham and Walsall. (30)

1.2.4 The Living Options initiative in England whereby multi-agency development projects are only funded if disabled people are involved as equal partners throughout the whole process is an example of how this involvement can be built in to the structure.

1.3 The use of standards

Any service which provides information and advice to disabled people should commit themselves to working towards the quality standards described in greater detail in Section 3 and Appendix 8 below. The Citizen's Charter states that public services should set, monitor and publish explicit standards for the services that individual users can reasonably expect.

1.4 Training

In some areas training is as important, if not more important than basic information resources. For instance, when disabled people need advice about benefits, housing or employment, an adviser needs access to nationally produced information like the Disability Rights Handbook or material produced by the Benefits Agency, but more importantly needs experience in the way the system operates, and training in how to help clients get what they are entitled to.

Training may be required in 4 areas:

1. training about particular subject areas, eg benefits;
2. information and advice training, which should also form part of the skills training of all service providers, eg social workers, health professionals and staff in the fields of education, housing and recreation;
3. training to enable staff and/or volunteers to understand and work towards the quality standards referred to in section 1.3 above; and
4. disability equality awareness training. Any service or information providing agency should run courses for its staff.

The high cost of training must be recognised by funding bodies, and the role of national bodies in the provision of appropriate training should be recognised.

1.5 Dissemination and Publicity

At local level, as great an emphasis should be given to the dissemination of information as to its collection and processing. Evidence suggests that a great deal of information already exists, that a great deal of effort is going into the collection and organising of information, but that not enough information is getting across to the people who need it, and that a great many people still do not know where to go to get it.

Publicity may itself be as important as the quality of written information or information services available. Again, there are several pieces of research which describe experiments with different approaches (31,32).

There are many examples of good practice to draw on. For instance, as part of NDIP, the Birmingham Information Federation developed a signposting service called Disability Link Line which directs enquirers to the most appropriate source of assistance. The experience of this suggests that such a service needs a high level of publicity which could be used as effectively to promote the services actually providing advice. The Berkshire Disability Information Federation produced a card which was widely circulated and which GPs gave out to provide a point of contact for people in need of information and advice.

The Working Group considers that this is an important issue to be addressed, primarily at local level. Local strategy groups might consider the desirability of a single telephone point of contact within each local authority area for signposting to disability information.

1.6 Independence

It is important to ensure sufficient sources of independent advice. While it may appear that a duplication of sources of information is wasteful of resources, this is not necessarily the case, particularly if the effort of collecting information is clearly focused on particular national bodies or on a network at the local level.

It is important that a disabled person has a choice about where to go for advice and information, and that services are available which can act on behalf of an individual who may be in dispute with the health service, the state benefit system or the housing authority.

1.7 The one stop concept and networks

The desire for a one stop source of information, to prevent people being passed from one agency to another, was one of the themes emerging from the Scottish Office survey. A one stop or single door source of information does not necessarily mean a single physical point of access to information. Such a literal understanding of the concept would be extremely limiting, and might effectively make access more difficult for disabled people, particularly in rural areas. The concept of one stop is essentially to prevent the disabled person being referred from one agency to another, or between different people within an agency, without any of those people taking any responsibility for the outcome of his or her case. It is also about ensuring that all the aspects of a person's need for information and advice can be identified as well as appropriate ways of meeting those needs. Various approaches to creating one stop sources of information are being tried.

Within the Benefits Agency a staff member takes responsibility for a client, and sees the case through to an end.

In social work departments clients are allocated to a keyworker who is responsible for all aspects of a client's care.

In Lothian Region an Advice Shop has been set up in a city centre location staffed by the Consumer and Trading Standards and Social Work departments.

In Cumnock and Doon Valley, a joint initiative between the region and the district is providing a network of information points for members of the public providing information about all regional and district council services, as well as information about health services, employment, benefits and community information. People are able to make appointments to see particular experts. As well as staffed offices, freephone services will be available at 11 outlets.

The Bridges Basement in Edinburgh, funded mainly by the Scottish Office, offers one door access to services and information for young homeless people in the east end of Edinburgh. The social work department, careers service, local CAB, Benefits Agency and Edinburgh district housing department are all involved. A full time social worker has been seconded for three years, and negotiations are underway with Lothian Healthcare and the Royal Edinburgh Hospital to provide on-site assessment and surgeries. Access to pre-vocational training is being offered. Despite being an interesting example of multi-agency working, this project is sadly not accessible to anyone with limited mobility.

Pave the Way is a publication for children and young people with special needs in Glasgow and their parents and carers, and covers all the services available to them, including benefits, health, transport, education and housing. This is the result of a joint exercise involving staff from social work, education, health and housing, as well as groups from the independent sector.

An important element in the one door concept can be seen to be multi-agency working. This can involve bringing different agencies to one place, as in the Basement or the Cumnock and Doon Valley project, or by drawing together a range of expertise into one source of information, as in Pave the Way. An equally valid approach to the one stop concept is through a network or federation of information providers, perhaps marketed jointly and with the resources to refer effectively to the most appropriate source of advice. Within the network the appropriate role of generalist and specialist services should be spelt out.

The Working Group believes that this type of collaborative working is increasingly necessary to break down the barriers which have tended to compartmentalise and segregate services. The Working Group recommends that local information and advice forums should consider ways in which collaborative working and effective referral procedures can effectively answer the need for "one stop" information and advice.