impairment: historical, current and future perspectives

problems of older people with a visual impairment: historical, current and future perspectives The needs and by Mark Davis approximate one million p...
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problems of older people with a visual impairment: historical, current and future perspectives

The needs and

by Mark Davis approximate one million people who registrable as blind or partially sighted

Of the are

nine out of ten are over the age of 60. One in of all older people over the age of 75

and mobility. Such ideas have to a great extent dictated the provision made by rehabilitation, specialist and mainstream services.

seven

How has this

registrable as blind or partially sighted. The vast majority will not be totally blind but will have some degree of residual vision.

regarding the needs of older people, the problems, difficulties and barriers that they face, and what of the

In the first of a series of articles highlighting the needs, difficulties and problems faced by older visually impaired people, Mark Davis, Community Care Officer - Older People, RNIB Social Services Development Unit, reviews the status of older visually impaired people through a series of official reports and outlines the problems they still face.

Like older people in general, visually impaired older people are not a homogenous group, though they are too often treated that way. They can be visually impaired people who have grown older and who lost their sight at birth, in their early years or during their adult working lives. The majority, however, will have lost their sight after the age of 60. There may be additional factors including:

are

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Introduction

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.

Many professional

Registered blind and partially sighted people under the age of 60 have been proportionately more aware of, obtained access to and used available services; this has been the case even though older people have always made up the vast majority of the visually

about, what are the issues

current situation and the future?

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staff working with older people and even some in the field of visual impairment are not aware of the facts, their implications and the influence that these can have on service planning, commissioning and delivery.

come

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physical disabilities; mental health problems; hearing impairment; learning disabilities; dementia; other health and social care a combination of these.

problems;

or

Variations in lifestyle, life experience and personalities can be enormous but what is important is that individual circumstances and needs, including those of families and carers, should shape the type of services and resources needed and how they are

provided.

impaired population.

Historical

past - and to a lesser extent today - the provision of services has therefore concentrated mainly on the needs of the younger rather than the

There have been references to the numbers, incidence and needs of visually impaired older people from the mid-19th Century and a number of significant research surveys and reports over the last 30 years, both national and local, have highlighted the issues of older people with a visual impairment. They have looked at visual disability, populations with a disability or at older people in general. The following is a sample of the surveys, research and reports:

In the

older person. Because of this concentration there has been little in the way of a co-ordinated effort to provide older people with appropriate services. It has to be recognised that this has not been helped by the difficulty in identifying the total number of older people involved and their degree of visual

background

and trends

impairment. a

Older visually

impaired people have not had a high profile because of ’ageist’ attitudes and values and the myths surrounding old age and visual impairment, including notions of dependency and negative roles. In turn, visually impaired older people have been marginalised from accessing and obtaining services, both specialist and mainstream. Often, older people have been considered as unable to receive training, whether for communication, daily living or orientation

Harris

(1971 )7 looked at the needs of disabled

upper age limit. The estimated numbers and incidence of visual disability then appeared low.

people with

no

Hunt (1978)$ looked at people over 65 years of age. It included little on visual impairment but provided a way of comparing the needs of the older visually impaired population with older people in

a

general. 53

o

Cullinan

(1977)3 contained information on

disability and other disabilities including multiple disabilities, especially in the very old as there was no upper age limit, but this was only a local survey. visual

Gray and Todd (1967)6 was specialised, and although it was interested in training resources it did not look at the upper age range and those aged 80plus were therefore not included.

o

Clarke, Carter et al. (1981 )2 provided information on people of 80-plus years of age. Daily living skills and social life were among the topics included.

o

RNIB (1981)~3 was the first attempt in almost 20 years to carry out a nationwide survey amongst blind people. A sample of the RNIB Talking Book Service was used. 45% of the sample were over 75 and 68% over 65. Many of the explanations for nonresponse were due to extreme age or infirmity and so, if anything, the figures reflected an under-estimate of the potential numbers of older people. o

voluntary organisations; it made reference to the age structure of the population in reviewing services and their organisation; it stated that: &dquo;visual disability cannot be considered in isolation from the total and individual needs of the person&dquo;, a particularly relevant point for older people; and further it emphasised the need for local voluntary organisations concerned with visual impairment to liaise and co-ordinate their efforts with organisations working with people who are hard of hearing or deaf and those working with older

people,

such

as

Age Concern.

Department of Health (1989)5 considered the need for more effective co-ordination of services between health, social services, voluntary and other agencies; and looked particularly at certification and registration procedures. The issues it discussed had implications for older people such as:

c

.

.

.

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delays in receiving hospital appointments; lack of information on diagnosis; delay in certification and registration; delays, or even the lack of, follow up visits and assessment;

During the period 1984-86 the RNIB was engaged in reviewing options for the development of its services, to identify priorities and draw up an overall development programme. There were a series of policy reviews, feasibility studies and position papers commissioned by the RNIB. They were to identify trends in policy and practice elsewhere and to identify future roles for the RNIB. Shore (1985)~6 was commissioned by the RNIB Study Group on Rehabilitation. This identified a very low provision for people over the age of 65 and suggested that ageist attitudes resulted in discrimination against older people with a visual impairment in terms of the quality of the rehabilitation service they received; the proportion of older people not offered rehabilitation greatly exceeded that of the younger age group. The prevailing attitude was that older people would gradually come to terms with their failing eyesight and, because of old age, frailty or additional disability, they would be unable to acquire new skills or coping strategies for daily living. The study highlighted other factors that would affect older people. There was a large variation in the standard of provision of social rehabilitation and delays in the registration procedure prior to receiving rehabilitation. It reiterated evidence concerning the wide variation in the numbers and expertise of social services staff responsible for assessing people with a visual impairment and for providing rehabilitation services. It raised the urgency of rehabilitation input for older people and supported the Tobin and Hill (1984)2~ recommendation for an indepth study of the rehabilitation needs of older people.

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OPCS

(1988)11 provided evidence that there

1.7 million people with a visual impairment in the UK (not to be confused with visual impairment so severe that it is registrable); the prevalence of visual impairment ranks fifth when compared to other disabilities; the majority of people with a visual impairment were older people; and many of the causes of disability are age-related; and older people are more likely to have more than one disability. The

were

survey, however, collated only a narrow range of information on visual disabilities. Bruce et al (1991 )~ was a major breakthrough because, for the first time, it provided on a national scale a wealth of information on needs. Previous national surveys had been conducted on a fairly limited range of topics but this Survey was designed to be complementary to OPCS Disability Surveys so that comparisons could be made and it was intended to be instrumental in formulating the RNIB’s future

0

policy. In the past, both the statutory and voluntary sectors tended to plan services on the basis of statistical information from the Registers of blind and partially

sighted people. This

Social Services Inspectorate (1988)~9 had implications for all people with a visual impairment including older people. It advised on issues relating to philosophy, policy, service structure and organisation; assessment and planning, accountability and

a

in obtaining information in appropriate formats on rehabilitation and other available services and resources; problems with access to counselling.

difficulty

Survey showed that there were far more older people with a severe visual impairment than had previously been assumed from the Registers and, accordingly, how much unmet need there was particularly amongst people aged 60 and over. It showed that out of one million registrable blind or

partially sighted there were 750,000 visually impaired people, the majority of them older people, who were unlikely to be identified by health and social services as visually impaired and who may not have been receiving appropriate help or support; naturally, the majority of these were over 60. For these the Survey identified areas that needed to be tackled including: ~

isolation;

~

communication difficulties;

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independent living skills;

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accessible information; orientation and mobility

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housing;

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health and social care; leisure.

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.

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.

I I

low income; loneliness and isolation;

crime; fear of crime; loss of independence; being under-valued.

Finally, there is the problem of coming to terms with ageing, disability and loss.

low income;

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.

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training;

As a result of this Survey older people have been made a priority in the RNIB’s Corporate Strategy 1994-2000 ( 1994) ~ 6.

The needs of families, carers and supporters should be taken into consideration as they will need help in their understanding of visual impairment. There is also an estimated 200,000 visually impaired older people living in supported environments who may be marginalised and not receive the support they need to maintain or improve the quality of their lives. Staff may receive little or no training in the ability to understand and address the needs of their visually impaired residents. New Independence, RNIB (1994)15 is a complete and comprehensive training package for the providers of care which can help to tackle the issues involved.

Barriers and needs and effective services for visually

Appropriate impaired cider people can only be provided by identifying their needs and the difficulties and barriers which they encounter. Because of their visual impairment, older people have additional needs and difficulties to face. These can encompass specific tasks such as reading, writing, shopping, cleaning, ironing, facial recognition and having to cope with daily living, communication, mobility, and socialisation. Greater problems will exist in accessing services including health, social care, housing, leisure, transport and in being adequately assessed and receiving a suitable service. The lack of accessible information in appropriate formats provides another hurdle, hampering informed choice and the knowledge of rights. Visual impairment can involve additional financial commitments and therefore people need to know and obtain their full entitlements even though these may still be inadequate to meet commitments. Unsuitable environments cause added difficulties for mobility, social functioning and daily living. Although visual impairment can bring additional hardship in coping, the outcome can also be dependent on the individual’s personality; and access to counselling services can help maintain the ability to cope emotionally. Myths and stereotype images still exist and can be used by visually impaired people and society as a false basis for their feelings, emotions, attitudes and values.

Not surprisingly,

visually impaired older people have

to confront general barriers such

as:

If an older person has additional disabilities, including hearing impairment, then the obstacles to daily

a

living, communication, mobility, information, choice, rights and access become even more difficult. The RNIB Needs Survey (1991)1 highlighted that, excluding hearing problems, 67% of blind and partially sighted people had another permanent illness or disability. Most frequently mentioned were: .

.

arthritis; a heart condition;

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limb/mobility problems;

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diabetes.

Approximately a third of all older visually impaired people had a hearing loss and for those over 75 years of age this was nearly half of the total. This raises the importance of: .

.

.

staff training to deal with sensory loss and the complications of multiple impairment; health promotion and screening; the complexities of combined deafness and blindness.

Deafblindness is a complex disability in its own right, separate from both hearing or visual impairment. The majority of deafblind people are elderly. Their needs have to be addressed - including access to Community Care, Guide Help schemes and interpreters - to help them overcome difficulties with basic living, communication, information and mobility. Macular degeneration is the most prevalent cause of sight loss in people over 60 but is rarely cited by individuals as the cause of their impairment; its etiology and implications are often not fully understood by older people which, in turn, provokes

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and people need to leads to complete sight loss and that help and support can be obtained to enhance whatever functional vision remains, either through visual substitution or visual enhancement.

context of the contract culture and the ’mixed economy’ of care which now exists. This may well be to the benefit of older people as local societies serving blind and partially sighted people have a long background of involvement with them.

Recent trends

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anxiety about the future; understand that it

never

The

RNIB Needs Survey (ibid.) and the introduction of the National Health Service and Community Care Act (1990)~~ there has been increased research activity and awareness in the field of visual impairment and ageing.

Following the

provision .

Discrimination Act (1995)4 should to services, information, the of goods and services and transport.

Disability

influence

access

The Carers Act (1995) comes into force in April 1996 and will affect carers of visually impaired older people and carers who are visually

impaired. The publication of the Good Sense Guide (1991)~$ by the Social Services Inspectorate was followed by a series of regional services with some focus on older people. The Association of Directors of Social Services (ADSS) has supported conferences on community care issues concerning visual impairment. In 1994 the ADSS held the Think Sensory Conference which focused on older as well as younger people. The Department of Health has supported the development of a community care training package Reaching the needs of people with visual disabilities RNIB (1994)14. This is aimed at non-specialist staff and could have a profound effect on the awareness and knowledge of visually impaired older people.

Department of Health in 1994 set up a steering group on older people with a dual sensory loss and has been working with a number of other bodies to produce a ’good practice’ document. The result is due to be piloted in a number of local authorities in 1996. More recently the ADSS, via its Disabilities Committee, has been following up the Think Sensory Conference and will be liaising with the ADSS Committee on Older People. The

Lovelock et al (1995; BJVI, 13 :1)9, sponsored by the Rowntree Foundation, was an important piece of research concerning the assessment, planning and social support needs of visually impaired people. It looked at co-ordination between specialist and generic services and it therefore encompassed the needs of older people.

Joseph

There have been other national, initiatives throughout the UK:

Until the 1950s there was a scarcity of information on the problems of older people and even then the majority of it was medically based. During the 1970s, social surveys began to look at the particular problems of the 75-plus age group. In the 1980s, there were few national surveys, most information being derived from the General Household Survey of 1985 (OPCS 1989)~2 and, ironically, through the OPCS Disability Surveys of 1988. Meanwhile, the study of gerontology has grown which should have further beneficial effects for visually impaired older people.

The

present

Although there has been some progress during the last ten years, the mechanisms for service delivery still be unco-ordinated and resources insufficient to meet needs; inequality of service provision still exists between geographical areas within all sectors of service; there are still organisational and service delivery issues which need to be addressed including can

identification, rehabilitation, assessment, low vision services, information, consultation, advocacy and the environment. Then there are problems for visually impaired older people, their families and formal and informal carers in knowing what services are available and how to access them. There is a shortage of rehabilitation services, with consequent delays, often because there are too few specialist staff; these may have low status and a low profile; and non-specialist staff lack the necessary skills and knowledge to carry out assessments and provide services.

regional and local

people.

Information is more widely available than it was in the past but nowhere near as widely as it should be (though RNIB’s See It Right Campaign has helped to raise the levels of awareness and good practice). Registration, when and where it exists, is still too often the key to accessing services; and most visually impaired older people have not been formally identified.

Because of new community care mechanisms and philosophies, the voluntary sector nationally and locally has become involved in the direct provision of a range of services and the role of the voluntary and private sectors is likely to continue to expand in the

Historically, there have been few specific references to visual impairment in discussions of services for older people and this trend has continued; the vast majority of Community Care Plans make either brief or no reference whatsoever to the prevalence of

The Department of Health has set up the Community Care Development Programme to focus

o

and encourage work in the areas where it is most needed. Aimed in the right direction, this development could be most beneficial to visually impaired older

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visual impairment amongst older people. Real consultation and participation in the planning, development and delivery of services is too often ’tokenistic’ and it is market-led.

Information on eligibility criteria for accessing services is still limited and people are excluded from community care services because of eligibility criteria. Some local authorities are reassessing these in respect of basic services and this will affect older visually impaired people badly because they are often reliant on home help and domiciliary care, particularly for shopping and cleaning.

4

The Disability Discrimination Act (1995) HMSO, London.

5

Department of Health (1989) Co-ordinating services for visually handicapped people. HMSO, London.

6

Gray &

7

Harris, A. (1971) Handicapped and Impaired in Great Britain. HMSO, London.

8

Hunt, A. (1978) The Elderly at Home. HMSO, London.

9

Lovelock, R., Powell, J. & Craggs, S. (1995) ’Shared Territory: Assessing The Social Support Needs Of Visually Impaired People’, Community Care/Joseph Rowntree Foundation. BJVI, 13.1.

The future In order to achieve

coherent service for visually impaired/sensory impaired older people, collaboration and co-ordination is required between all those concerned with older people in general and those who work primarily with people who have a visual, hearing or dual-sensory impairment in the areas of policymaking, planning, commissioning, service delivery, standard-setting, monitoring and evaluation; to this end, action should be initiated at every level: central Government; local authority and voluntary sector. It follows that management and front-line staff should promote and be involved in inter-disciplinary and multi-disciplinary work practices. It is not enough to be aware of blindness amongst older people: early detection and prevention are of major importance; conditions which can be remedied should be; and help should be given to those groups which are susceptible to specific eye conditions. a

All this having been said, we are heading in the right direction. Awareness and knowledge can only increase. It is projected that in the next 50 years the number of people over the age of 75 will double and this will have a dramatic effect on the overall provision that will be required for the elderly. Will the same barriers and problems exist and if so on what scale?

As the whole subject of older visually impaired people is so vast and there are so many implications, we can only begin to raise some of the issues. It is hoped that succeeding articles will begin to look at these in more detail and provoke further debate, and more important, further action.

10 National Health Service and

11 OPCS

Surveys of Disability in Great Britain Report 1 (1988) The prevalence of disability among

adults. HMSO, London. 12 OPCS

(1989) General Household Survey of 1985. HMSO, London.

13 RNIB

and partially sighted adults in Britain: The RNIB Needs Survey, Volume 1. HMSO, London. 2

Clarke, Carter et al (1981) Visually Handicapped in

City of Nottingham. Blind Mobility Research Unit, Department of Psychology, University of Nottingham. Cullinan, T.R. (1977) The Epidemiology of Visual Disability. University of Kent, Canterbury. the

3

(1981)

Who

are

Britain’s Blind People?

RNIB, London. 14 RN I B

(1994) Reaching the needs of people with a community care training package. HMSO, London. visual disabilities -

15 RNIB

(1994) New independence for older people with vision loss in accommodation with care support - a training package for providers. RNIB, London.

16 RNIB

(1994) Corporate Strategy 1994-2000. RNIB,

London. 17

Shore, P. (1985) Local authority social rehabilitation services to visually handicapped people. RNIB, London.

18 Social Services

Sense Guide.

Inspectorate (1991) The Good Department of Health.

19 Social Services

Inspectorate (1988) A Wider of Health. Vision, Department Department of

Health and Social Services. 20

Bruce, I., McKennel, A. & Walker, E. (1991) Blind

Community Care Act

(1990).

References 1

Todd (1967) Mobility and Reading Habits of the Blind. HMSO, London.

Tobin, M. & Hill, E. (1984) Blind in Birmingham - a

pilot survey of needs and knowledge of available services. RCEVH, Birmingham. Mark Davis

Community Care Officer - Older People RNIB Social Services Development Unit 7 The Square, 111 Broad Street Edgbaston, Birmingham B15 1AS Tel: 0121-643-9912

Fax: 0121-643-1738 57

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