The Australian Library Journal
volume 50 issue 3

Disability information: from knowledge to power

This paper was originally presented at a Community Summit organised by the NSW Council of Social Service in Sydney on 9th April 2001.

Manuscript received May 2001.

Introduction
The aim here is to look at the provision of disability information and the role of information professionals:

• What obstacles are faced by people looking for information?
• Why is access to information important?
• What is the difference between advocacy and information?
• How is the provision of disability information being handled in NSW currently?

Terms of reference
For the purposes of this paper, disability information is taken to mean any inquiry that relates to disability in some way. The person making the inquiry may or may not have a disability. A disability information service is a specialist information service because the staff have specialist knowledge in this area. This knowledge is available to anyone in the community who needs it, for example, students, teachers, parents, advocates or government agencies all of whom may or may not have a disability.

What are the obstacles faced by people looking for information?
Too much information?
In contemporary Western societies there is a sense that every day we are wading up to our necks in information. Information is coming at us from the radio, the television, the computer, the letterbox, the newspapers, the magazines, the public address system and the billboards. We cope by tuning out. When a person does need specific information their first task is to sort, sift and search through the volume of information available. This takes time and energy and, most importantly, skill. It is not innate; it is a learned skill. This is where the information professional is valuable because she can act as a navigator; she has at her disposal something far better than a head full of data. She has the knowledge of resources and information seeking strategies to deal with whatever question is thrown in their direction.

Too little information?
While there is lots of information around very little information speaks directly to the individual. Information published on the internet or in brochures has a general, broad- brush approach.

This is where the information professional has a key role: not only will she sort and find the right information, but she can tailor it to the client's situation. In cases of need she can refer the client to other agencies. If the client has a disability, tailoring may also involve finding the information in an appropriate format, for example, a plain English explanation or a video for a person with an intellectual disability. There is no typical information request and to write a list of frequently asked questions would be near impossible.

Example A Queensland family with a son who has a developmental disability are relocating to Geelong, Victoria. They want to know what services are available in Geelong. The information officer provided the family with a list of services that included among other things, local schools, respite, medical and transport services. The information officer used a variety of resources for this inquiry: the in-house database, a Victorian information service and the Geelong Council's Community Services directory.

The dimensions of user need
'I want what I want'
When a person wants information, that's just it, they want information. They do not want to spend time looking through books. They do not want to wait in a phone queue. They do not want to log onto a computer and surf the internet. The self-serve vending machine model for information would never work for this reason alone, but there are other reasons as well. The need for information is occasional and just as in many other aspects of life we rely on professionals. If a power point in the kitchen fails, you call an electrician. You do not enrol in an electrician's course at the local TAFE.

'I said what I meant not really'
If you work in an information service then you cannot escape dealing with human behavior. It is well-documented that when requesting information people do not say exactly what they want for a number of reasons such as lack of self-confidence or lack of communication skills or feelings of awkwardness. Asking for information can be difficult for people because to do so is to admit to a measure of ignorance, just as to ask for help is to admit to a measure of helplessness. An information professional knows how to speak with people and perhaps more importantly, how to listen; they know how to take a vague opening question and refine it down to what the person wants to know. This process involves the delicate art of asking questions without being intrusive, being respectful at all times and not making value judgements. It means adhering to ethics of impartiality and respecting freedom of information.

Change
Change is endemic in our society and impacts on all sectors, but especially on the information sources which people with disabilities or their carers need to access. Government departments are not immune from this volatility. How many government department name changes and reshuffles have you lived through? How many programs have disappeared or been modified or look the same as always but in reality have changed because of lower levels of funding? Whether change is superficial or profound it nevertheless adds to the confusion. The volume of information coupled with the rate of change in society is a big obstacle to people looking for just one piece of information. It is the information professional's job to keep track of changes, to keep her information and contacts up to date. This is a job that requires organisational skills, people skills and information technology skills. It is a job that never ends. It is like painting the Sydney Harbour Bridge. You start at one end, reach the other side and then start again.

Example An elderly couple are travelling from Sydney to Ayers Rock. The wife uses a wheelchair for mobility. They need to know about accessible hotels or motels along the way with appropriate equipment in the bathroom. Also they can only travel five hours at a time and are unable to leave the motel before 11 am due to personal care needs. The information officer used the in-house database to get an initial list of accessible accommodation and then she phoned these places to check which ones could meet the couple's other requirements. The couple were given a list of places that meet all their needs.

Why access to information is important
Access to information is closely linked to choice. If you do not know, you cannot choose. Choice in turn impacts on quality of life, participation in the community and a sense of independence. Despite its important place in the scheme of things, information can easily be taken for granted because in a way it is invisible. When you know something, you know it. When the need arises the brain retrieves the information and puts it to use. Every day we are faced with the need for information to make decisions and to choose between options. Mostly it is not a problem because the bulk of the situations we encounter are familiar and we rely on past experience and on accumulated knowledge. For example, where shall we go for dinner tonight? You know the town and you have eaten out before, so maybe you will choose an old favourite or try the new place that you noticed has just opened. You have the information you need. Life is sweet.

In another circumstance, you are new to the town and you are going out with a friend who is also new to the town and who uses a wheelchair. You need to find an accessible restaurant. You do not want to phone all the restaurants in town nor do you want to personally inspect them all. You need information. You are painfully aware of the need for information. People are most aware of information, and its impact on their life, when they do not have it. People need information. It enables them to be in control of their life. The value of an information service is that it becomes a storehouse of knowledge that the community can dip into as the need arises. The information professional's job is to collect, organise and make available that knowledge.

Example A social worker rang regarding a teenager who is an amputee and who was demonstrating very low self-esteem and inappropriate behaviour. The social worker was looking for a peer support program for the teenager. The information officer checked the in-house database for a peer support program in the local area but found that none was available. By making inquiries in adjacent regions she found a program that would work with him in a nearby town.

The difference between advocacy and information
In the disability sector there is some confusion between the advocate's job and the information professional's job. In other areas there is a clear delineation between information and other related services that involve advice or advocacy. In the State Library of NSW there is a Health Information Service and a Legal Information Access Centre. The legal information professionals do not offer legal advice nor do they help settle disputes. Clients are referred to solicitors, lawyers and legal aid centres. The health information professionals do not make diagnoses or prescribe treatments. Clients are referred to doctors. These two specialist information services provide information about health and legal matters to the lay person. The purpose is to inform and consequently empower people so that they can participate in a process that is affecting their life. An informed health consumer asks more questions and can actively participate in their own health care.

There is a big difference between advocacy and information work. The information professional informs while the advocate takes action. The information professional's role is to remain impartial while the advocate's job is to take sides. The advocate is a political creature, but the information professional is not, for good reasons. The information professional needs to be bound by ethics of impartiality so that information is not censored or withheld. A key indicator of whether we live in a democratic society or a paternalistic one is how easily we can access information.

Example A man on a disability support pension phoned who was having problems paying his monthly bills. In particular he needed to buy a heater for his Housing Commission unit because he lived in an area that gets very cold in winter. The Department of Housing referred him to the disability information service. The information officer consulted various local community groups and was able to provide information about a no interest loan scheme and a free financial counselling service to help him with budgeting.

How is disability information being handled in NSW?
The network
In NSW there are a number of disability information services. Each has its own area of specialisation. Some information services focus on a region, for example IDEAS (information for people living in the Riverina-Murray, Illawarra, South Coast and Canberra area) and the Disability Information and Resource Centre - Eastern Sydney. Other information services focus on a disability group, for example NSW Council for Intellectual Disability (information for people with an intellectual disability) and AQA (information for people with a physical disability). Yet other information services focus on a service type, for example Accessible Arts (information on arts and cultural activities) and Independent Living Centre (information on equipment and aids). Some information services are part of a large organisation or a peak body, while others are small organisations dedicated to providing information only. Funding comes from various sources.

There are three major strengths in the current system. These are specialisation, co-operation and autonomy. Each information service has an area of specialisation which means a depth of knowledge that other information services can tap into. This minimises duplication of data collection and saves time and money in the long run. The areas of expertise are different and complimentary. Expertise and knowledge are freely shared because there is an ethic of co-operation among the disability information services. This has great benefits for the client. When a person makes contact with one information service they have access through them to all the other information services. The information professionals do not hesitate to call on each other for assistance.

Each information service is autonomous. This makes possible flexible service delivery and more choice for the consumer. Each information service is free to develop their service to meet the needs of their particular clients and to adapt to the environment in which they operate. The NSW branch of the Disability Information Network Australia (DINA) facilitates communication and co-operation between the different information services. DINA NSW is the peak body for disability information services in NSW. It provides a forum for knowledge sharing and skill sharing through regular meetings and an electronic mailing list.

The referral merry-go-round myth
Occasionally people will tire themselves out phoning many places and not finding the information they need. This is sometimes called the referral merry-go-round and it is mistakenly used as evidence that the current network of disability information services is not operating efficiently. What is actually happening is that the person is looking for a service that is not available. In certain areas, such as accommodation, services are not adequate. While the aim of all disability information services is to provide people with a variety of options. This is not always possible. When there are no options, there are no options. This is the miserable part of the job of providing information. The information professional can only direct people to what is available.

Example A woman with a physical disability phoned who needed to have her car modified. Centrelink referred her to the disability information service. She wanted to know who could do car modifications in her local area and if there was any financial assistance available. The information officer used the in-house database to give her a list of authorised people who could do the modifications and explained how the PADP [Program of Appliances for Disabled People] scheme operates. The information officer informed the caller that generally car modifications were low on the priority list for PADP.

Knowledge and data
There is knowledge and there is data. Data is the simplest form of information and the least useful. An example of data is a raw fact like a phone number. Knowledge on the other hand is data which has been enhanced by human understanding. For example, a phone number is given with the added information, 'Phone Monday or Wednesday, it's not so busy then and ask for David because he knows about this.' Knowledge comes from experience and expertise. It is a distinctly human trait. A modern disability information service has three basic components that work together. These are software, hardware and people. The computer stores the data while the information professional accumulates the knowledge that makes the data meaningful. There is a tendency at present to devalue the information professional and instead to sing the praises of the technology. We focus on the tools at the expense of the worker.

In conclusion
In the business world the value of information is not questioned. Information is highly prized because it can give a company an advantage over its competitors. In the community sector information does not relate to profit margins, but it is linked to quality of life, participation in the community and a sense of independence. It is hoped that this paper will promote discussion on the need for equitable access to information.

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