Item 6b

Summary Report

Working with people with sensory impairment:

An initial review

Prepared for

Topss England

Sensory Impairment Task and Finish Group

D Statham, L Green and R Clough

March 2004

Acknowledgements

We would like to thank members of the sensory impairment task and finish group for their contributions to the content of this report. Specific thanks go to those people who were involved in interviews and provided material for this report.

Contents

Page No
1 /

Introduction

/ 4
2 / The size of the current population of people with sensory impairments / 4
3 / The workforce for people with sensory impairments / 6
4 / Benchmarks for providing quality services / 7
5 / The experience of the sensory impairment workforce / 8
6 / The experience of people with sensory impairments using services / 9
7 / Developing models of good service and practice / 9
8 / Key issues for workforce development, planning and practice / 15
9 / Recommendations / 15

1.Introduction

This report presents a summary of an initial review of working with people with sensory impairment[1]. The research underpinning the work included an extensive literature review and a series of interview with key people in the field of sensory impairment.

The review examines definitions of sensory impairment, the size of the sensory impairment population and its workforce and the requirements and experience of people with sensory impairments. From the review two models to illustrate needs for action at national, local and individual levels and a series of recommendations to support the needs of people with sensory impairments have been developed.

In the report the term ‘sensory impairment’ is used to cover people who have:

  • a degree of deafness from mild to profound
  • a visual impairment ranging from low vision to blindness
  • a dual sensory impairment, also defined as “deafblind”, which can differ in extent and nature in terms of both impairment
  • a single or dual sensory impairment together with other impairments and/or disabilities.

Definitions of sensory impairment are precise among specialist workers but are less clear to other groups of staff. In addition, many who work with people where a high incidence of sensory impairment is likely to occur are unaware of the how sensory impairments can be recognised. There is also a lack of understanding of the implications of sensory impairments on the people themselves and on their own working practices by staff.

2.The size of the current population of people with sensory impairments

Actual and predicted total populations (calculated using statistical techniques to produce forecasts on known data for people with sensory impairments (Lomas, 1997) for 2003 and 2012) provide the following estimate for people across the sensory impairment spectrum.

  • Blind people: 171,133* in 2003 and 190,174 predicted in 2012
  • Partially sightedpeople: 170,178* in 2003 and 223,174 predicted in 2012
  • People of all ages have deafness ranging from mild to profound: 9 million in 2003 and 10 million predicted in 2012
  • People who are “hard of hearing”: 8.3 million in 2003 and 9.2 million predicted in 2012
  • Deafened: 123,000 in 2003 and 137,000 predicted in 2012
  • Deaf BSL users: 50,000 in 2003 and 56,000 predicted in 2012
  • Deaf children: 23,000 in 2003 and 25,500 predicted in 2012
  • Deafblind: 24,000 in 2003 and 26,700 predicted in 2012
  • Lesser degree of combined hearing and visual impairment:250,000 in 2003 and 277,800 predicted in 2012

The asterisked figures in the first two bullets are based on data for blind and partially sighted people who are registered. This is known to be an underestimate by some 66% (RNIB). Lomas uses the higher figure of 75% (Lomas, 1997). If the figures for 2003 and 2012 are extrapolated upwards to take account of the 75% underestimation the actual number for 2003 would be 1365,244 and the predicted number for 2012 would be 1653,392.

A substantial number of people with sensory impairments are not included in the statistics because:

  • their sensory impairment has been missed, they do not wish for their sensory impairment to be recognised or the sensory impairment has not been diagnosed
  • they exclude people with sensory impairments receiving other services and who are counted under other categories, for example, under “older people”.
  • information for the private and the voluntary sectors is held in the records of individual organisations.

There are particular groups of people where the incidence of sensory impairment is high. These include older people, people with learning difficulties and certain conditions such as epilepsy. For the majority of people sensory impairment is an acquired as part of growing older, accidents such as head injuries or medical conditions such as strokes.

Longer life expectancy will increase the number of people with complex needs and more severe forms of sensory impairment including deafblindness.

3.The workforce for people with sensory impairments

There is little workforce data about those who work routinely with people with sensory impairments, although the incidence of sensory impairments among older people and people with learning difficulties means that this number must be substantial.

According to the HSCWG’s 1999 survey (HSCWG, 2000), 2627 (1427 in SSDs and 1200 in non SSDs) workers specifically work with people with sensory impairments. These comprise social workers, support workers, development workers, language aides, technicians, Sign Language interpreters, rehabilitation workers, team leaders and people with “combined job categories”.

Of these, 214 (15% workforce in SSDs) and 241 (20.2% workforce in the independent sector) of the staff have sensory impairments themselves (HSCWG, 2000).

These figures provide only a rough estimate of the total workforce working with people with a sensory impairment. Other surveys have produced different figures which makes workforce planning difficult.

Patterns of work vary between sectors. In the private and the voluntary sectors there are approximately 10% more staff working exclusively with people with a sensory impairment than in social service departments. There are differences between the sectors in the numbers working exclusively with people with visual impairments. The greatest difference is the number of people working with more than one group: 50.6% in the social service departments and 26% in the private and the voluntary sectors. The number of workers who have sensory impairments is slightly higher in private and the voluntary organisations (20%)than in social services departments (15%). These workers are often found lower down in the organisations and there is anecdotal evidence that those with social work qualifications can be seen as ‘biased’ in their assessments towards the individuals with sensory impairments. There are fewer social workers employed in the private and voluntary sectors than in social services departments.

The wide variety of job titles makes comparisons difficult. Young et al (2004) found different titles for job roles to those identified in the above HSCWG (2000) survey. These included titles such as support service assistants, equipment officers, assessment officers, homecare workers, welfare benefits advisors and advocacy officers. Dr Julies Franks found 80 different job titles in her UK study (2000 unpublished). Identifying whether the roles and functions carried out under these different job titles is the same or different requires further work

There are huge variations in the numbers of staff working in specialist social service department teams that cannot be explained by differences in the populations served or the resources available. These include integrated health and social care provision and the introduction of workers with dual specialisms (such as in sensory impairment and child care) into specialist teams workers. These need further exploration.

698 ophthalmic medical practitioners and 7,405 ophthalmic medical practitioners and optometrists are cited in England in 2002.

4.Benchmarks for providing quality services

Benchmarks for providing quality services for people with sensory impairments, include the need to provide a service that:

  • is person centred
  • addresses the holistic needs of the individual
  • provides active support[2] which recognises and builds upon the individual’s strengths and takes account of their views and preferences
  • recognises the contribution of, and works in partnership with people in the individual’s social network.

There is consistent evidence that current services are not achieving a service that addresses the above.

Specialist services are under considerable pressure. For disabled children and disabled parents support is often too little and too late. In services for older people, people with learning difficulties and in mental health, sensory impairment is often missed.

A wider range of provision needs to be developed in the health and social care sector that addresses the particular needs of people with sensory impairment holistically. These include direct payments, respite care in the individual’s home, outreach work for black and minority ethnic communities where there will be an increase in the number of older people with sensory impairments, rehabilitation support including in undertaking basic tasks essential to promoting independence in community based services and in residential and day care provision. There is also substantial evidence that some of the gaps in provision can only be addressed through improving partnerships between health and social care. This is essential where people have multiple or complex conditions, but also to reduce falls which result from low vision.

The SSI inspections of sensory impairments services found that where you lived was a significant indicator of what was available from statutory services and that different criteria were used in different areas. Quality and consistency wherever anyone lives is essential to ensure a quality provision for all people with sensory impairments.

The progress made in involving people with sensory impairments in the development of strategies, policy, services, in training, monitoring and review remains at a low level. This needs to be addressed to ensure a quality provision that meets the needs and preferences of individuals more effectively.

5.The experience of the sensory impairment workforce

There is considerable pressure to meet the increasing demands within limited resources and expertise. In the wider workforce there is a lack of staff with expertise in working with people with sensory impairments, including at the very basic level of understanding the need for magnifiers and hearing aids. Where needs are more complex as for deafblind people the lack of expertise is even more striking. Very few staff are competent to work with deafblind people. Changes in behaviour that is the result of isolation and frustrations in an older person who has become deafblind, for example, can be misinterpreted and responded to inappropriately.

Expertise is sometimes being misused. Specialist staff are sometimes expected to organise interpreting services for social workers and to act as gate keepers to scarce resources. In addition, the levels of BSL qualifications of 70% of specialist workers is below the accepted level required to undertake their work. Although there has been a steady improvement in the numbers of staff holding the appropriate level of BSL, the proportions are still well below what is required for an effective service. A particular gap exists in relation to black and ethnic minority communities where English is not the family’s first language with consequent communication, cultural heritage and identity problems.

6.The experience of people with sensory impairments using services

The progress made in involving people with sensory impairments in the development of strategies, policy, services, in training, monitoring and review remains at a low level.

The impact on individuals of undetected sensory impairment can be severe. There is a higher incidence of mental health difficulties among deaf people than in the general population which is thought to result from a lack of attention to their social, emotional, employment and recreational and leisure needs. Evidence was found of people with learning difficulties not having hearing or visual impairments identified, of older people in residential homes not having sensory impairments addressed and a lack of knowledge among managers about what services and resources were available. The SSI inspections of sensory impairments services found that where you lived was a significant indicator of what was available from statutory services and that different criteria were used in different areas. This has not changed significantly in relation to hearing impairments.

Inspections and research confirms anecdotal evidence that there is substantial non compliance with the National Standards for Older People and for Young Adults in relation to care in residential homes.

7.Developing models of good service and practice

A move from a predominately medical model to a social and holistic model is needed to underpin service and practice development.

This would aim to ensure that people with sensory impairments to participate to the utmost in making decisions about their lives, increase their life opportunities through access to education and training, employment, social, leisure and recreational activities. A radical approach that addresses organisational and service culture, language and the involvement of people with sensory impairments in these developments from the beginning and throughout the process will be necessary to make this transition.

Sensory impairment is an issue for an increasing number of people in the population and this fact has to be addressed in general services, in the training and supervision of staff and the strategic partnerships that are formed with health, environmental and transport services. Within the social care organisations a growing number of staff will need to be able to spot signs and symptoms of sensory impairment and be able to make informed referrals to specialists or to access specialist support in their work. This requires a significant improvement in multi disciplinary, multi professional and multi organisational working. The skill mix in teams, the range of specialists and knowledge of how to access them will need to be addressed.

Adopting these principles and criteria will have major implications for the skill base and skill mix required to meet the holistic needs of people with sensory impairments.

Figure 1, identifies key components for organisations involved within and outside the social care provision.

The three overlapping circles indicate the social care provision, which can be organisation or community based. They involve:

  • the generic provision, which covers a cross section of people requiring services that reflects the needs of the general population in terms of sensory impairment
  • high incidence provision, which covers work in areas where a high incidence of sensory impairment can be expected currently, and in the future. This would include, for example, older people’s provision, provision for people with other disabilities and learning difficulties, people with epilepsy and people with downs syndrome. In these areas specific and increased awareness of the signs and symptoms of sensory impairment are necessary
  • specialist provision, covers work where the primary focus is for people with sensory impairments. For example, RNIB’s college, residential homes run by the voluntary, private and statutory sectors, specialist social workers/care managers for Deaf people and rehabilitation officers for people who are blind and visually impaired.

Figure 1

Model for the provision of services for people with sensory impairments

Across the three circles there will be core skills and knowledge to be identified. Equally there will be skills and knowledge that may stagger two of the provisions. Finally, there will be skills specific to each provision.

The model also highlights the organisations and people with sensory impairments that reside outside the social care provision.

Organisations in this area are required to “make reasonable adjustments” for people with sensory impairments. Guidance is required on what might constitute “reasonable adjustments” across a range of organisations and service.

Outside the social care provision, also reside individuals with sensory impairments that do not need or want services. There are also individuals who require services who cannot access them. Work with the latter is important to ensure that they are able to access services to meet their needs efficiently and easily.

Figure 2, the Policy, Practice and Integrated Support Model for People with Sensory Impairments (PPISM) has been developed to support the work carried out in this study. It highlights critical components that need to be in place to meet the holist needs of individuals with sensory impairments at individual, organisational and national levels.

At the national level:

  • legal and statutory requirements are necessary to support the needs of sensory impaired people and the workforce that supports them
  • national organisations for individual and dual sensory impairment are necessary to lobby for the holistic needs of people with sensory impairments. These organisations already exist in the form of RNIB, RNID, Sense, BDA, NDSC, Deafblind UK, are actively lobbying and have a track record of achievement in lobbying

Figure 2

The Policy, Practice and Integrated Support Model for People with Sensory Impairments (PPISM)