Contents

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

2 Disability And Its Consequences

2.1 The definition of disability

There is still debate about the definition of disability. The traditional view of disability has been that it is a personal experience described in terms of functional loss. There has been an over-reliance on this traditional medical model, which views the disabled person as someone needing medical help and support from social services. An alternative view of disability has emerged, known as the social model, which defines disability in terms of the barriers which a person experiences in gaining access to goods, services, rights and entitlements. Disability is the "loss of or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical or social barriers" (4). The responsibility for removing these barriers rests with society rather than with the individual. The range of people who experience such barriers will include those whose mobility is impaired, people with sensory impairment, those with learning disabilities, those with mental illness, many elderly people, as well as people with conditions such as HIV, MS, ME or epilepsy who may not define themselves as "disabled" but who may face many of the same barriers as disabled people, whether physical or created by prejudice or ignorance. All these people need help to overcome these barriers.

The definition of disability has consequences for the type of information which disabled people are assumed to need. The medical model of disability assumes that information for disabled people relates primarily to health or social service matters, while the social model recognises that disabled people need all the same kinds of information as everyone else. In addition, a consequence of adopting the social model of disability may be the recognition that information on its own may not be enough to help disabled people gain access to the goods and services to which they are entitled. Advice will be required to make sense of the information and advocacy may also be required to provide the support and representation which the disabled person may need.

2.2 The prevalence of disability.

An Office of Population, Censuses and Surveys (OPCS) survey of disabled people in 1985 estimated that there were 611,000 disabled adults and 33,000 disabled children in the Scotland.(5) Extrapolating forwards from these figures suggests that by 1993 the numbers would have increased to an estimated 688,000 adults and 32,000 children. The incidence of some degree of disability is probably even greater than these estimates suggest. The Informability Guide produced by the Central Office of Information states that:

• 7.5 million people in Britain do not have full hearing;
• up to 1 million people are sufficiently visually impaired to register as blind or partially blind, while a further 700,000 find it hard to read newsprint;
• over 1 million have some degree of learning disability;
• 4.5 million have a range of physical disabilities which make it difficult for them to travel or get into or around buildings;
• around 250,000 have some degree of both hearing and visual impairment;
• 6 million people are diagnosed as mentally ill every year of whom 197,000 are admitted to hospital;
• 6 million are over 70 years of age and constitute 10% of the population.

A recent study on the future of the family and state care for older people in the European Union has shown that the rates of disability amongst older people in the EU are 18-19% in the population over the age of 60, 25-33% in the over 70s, and 47% in the over 80s. (6) As the percentage of older people in the population increases, the percentage of the population experiencing disability will increase.

2.3 Economic characteristics of disabled people

The economic circumstances of disabled people are considerably worse than the population as a whole: less than a third of disabled people of working age are in employment, and disabled people are three times more likely to be unemployed than able bodied people. Where disabled people are employed, their wages are below the average of non-disabled people. Sixty per cent of disabled people are claiming safety net benefits such as Income Support, and 47 per cent say they do not have sufficient income to meet their needs. A third of families with disabled children receive income maintenance benefits such as Family Credit, and 2.6 million disabled people and their families live on low incomes. (7)

2.4 Difficulties in accessing information

Particular problems experienced by disabled people in obtaining information and advice include:

• attitudinal barriers;
• physical barriers;
• social isolation;
• problems in understanding information as a result of sensory impairment or learning disability; and
• lack of motivation resulting from a feeling of helplessness.

Various surveys and research projects have demonstrated that information does not always get through to the people who need it.

The OPCS survey of disabled people showed that ten per cent of disabled people did not know how to find out about services, and only four per cent mentioned disability organisations as a source of information. Forty per cent of disabled people thought information about social security benefits was fairly or very difficult to get (8).

A study by the RNIB in 1991 showed that awareness of specific services for visually impaired people was extremely low. Two thirds of those not registered as visually impaired were not aware of such basic services as white sticks or canes.

A survey by the Automobile Association in 1992 showed that more than half of those who had difficulty in getting in and out of a car were unaware of aids that could help them.

Research by the Margaret Blackwood Housing Association into housing information and advice for physically disabled people indicates that there is very little written information available about the rights of disabled people in respect of housing.

2.5 Categories of disabled people needing particular consideration.

2.5.1 Children are not quickly recognised as being disabled as their disabilities may only become apparent as they grow older, and health professionals may be reluctant to "label" a child as being disabled too early. There may also be strong social and cultural pressures which deter parents from labelling their own children as disabled, especially in some of the ethnic minority groups.(9) The community care legislation deals only with services for adults, although a similar requirement for the assessment of children with disabilities will be introduced in the Children (Scotland) Bill. The Working Group was told of a lack of awareness among professionals and people who work with children of what services and benefits exist for families of children with disabilities.

2.5.2 Parents of children with special needs and carers of people with disabilities may face similar barriers to disabled people themselves, often being housebound, having very limited amounts of free time, possibly not defining themselves as carers, or as people who might need "disability information" or the services which may be available to them. Professionals can often make false assumptions about the ability of middle class articulate parents to find out about the services to which they may be entitled. Equally, if parents are already living on social security benefits, they may be falsely assumed to be "in the system", and well able to find out what additional benefit they may be entitled to. It has been estimated that two thirds of carers receive no professional help at all, and that 40% of the 6.8 million carers in the UK are over retirement age and may themselves be frail and disabled.(10)

A Department of Social Security study in 1990 found that carers in families with disabled children had net weekly incomes between £58 and £92 lower than those of comparable households in the general population.

2.5.3 Finally some disabled people and carers face additional linguistic and cultural barriers because they are members of ethnic minority groups. Information may not be targeted at such groups in the most suitable format. The Coopers and Lybrand Report in 1988 found that the development of significant centres of mixed race population had little or no impact on the provision of information or services. Little information was available in translation and few professionals were able to interpret information. (11) The Working Group was given evidence that ethnic minority disabled people still suffer from a very considerable lack of information either because information is not available in the different community languages, or because translation is done in a formal style of language which is not clear and direct. There is a clear need for trained interpreters and advocates and a higher degree of awareness amongst service providers of ethnic minority cultures, and the main languages which are spoken and read (12). People from ethnic minority groups often experience a form of double discrimination.

2.6 Conclusion

The extent of disability is considerable, and there is a wide range of types of impairment and particular problems arising from those impairments. In particular, the impact of hearing and vision loss on accessing information can be considerable. In addition, carers may themselves be disabled. Disabled people and their carers share various characteristics in terms of their economic and social position, but some groups, such as disabled children, their carers and disabled people from ethnic minority groups face additional problems which must be addressed in different ways. To improve the provision of information and advice to disabled people it is necessary to address the various barriers which exist to disabled people gaining access to the information and advice which they need.